Not one person. Not one life. Capable of anything.

Clinical Justification

2008-09-01T17:38:00.002+01:00

Well after clinic today I'm feeling oddly happier and more justified in how poo I've been feeling, I always worry that I'm being a hypochondriac and that I'm not as bad as I think I am, but actually it turns out I'm kinda of worse than I'd suspected.

Lung function was a rather vile 0.95 otherwise known as 23% eek....and my FVC was 1.45 or 30%, last time they were 31% and 48% and I wasn't that great then either. My oxygen levels were 89% - 90% which is bad as they put you on oxygen at about 92% - 90% depending on how understanding the doctor at the time is... this is the main reason for wanting to admit me, coupled with the very poor air entry into my poor little naughty lungs.

My weight is also down which I'm utterly mystified by, and actually quite annoyed about as I've been making an effort to eat more and do my feed, ever since that post I made a while back about being under-weight, it is also a worry as it indicates there could be a problem with my blood sugars (ie. diabetes) and so I may have to start doing insulin again. It's not that bad I had it when pregnant but it smells and I don't overly enjoy stabbing myself, I also worry about giving myself the wrong dose and putting myself in a coma, unlikely I know but it's scary stuff when you aren't used to it.

Iike I said at the start it sounds odd but in a way I am glad that I am actually ill and not just going mad, it's so easy to loose track of how well/unwell you are when you are going over and over the things you can't do, and the trips you didn't make in your head and trying to wiegh up if you were just being lazy and unfit or if you are genuinely too unwell.

I'm not sure what they are going to do this admission, I really hope it goes better than the last few I've had. I really hope they get to the bottom of this asthma business swiftly and do somethng about it and don't just faff which is a real risk when tackling things that are slightly uncertain. I also want to make sure that I'm put on a long term sustainable treatment for it, because whack-loads of steroids is not a good option in my book, and if that means we have to go through every asthma drug on the market then so be it.

So all in all it was a rather dire clinic appointment and not too suprisingly they have decided to admit me, so I've come home to pack, play one last game of reversi with Prince Adme Bogmulia Belkarty Lord Of The Reversi Bog and then I'm off for the forseeable future....let's hope Luke and Edward survive my absence :o(

See you when I'm home piglets xox

The Great British Duck Race

2008-08-31T16:54:00.013+01:00

The plan was to go to the duck race with some mummy chummy's however at about 9am this morning they texted me asking if we should cancel due to the peeing rain. I called back and after a bit of debating and motherly worrying about babies in the rain we decided to call it off.

I then flumped about the flat grumpng and plotting as I've had this pencilled into my diary for months, so in the end I decided that rubbish lungs and the great British summer were no match for me and that Edward and I would go and see how far we got!

As we walked out the flat and I realised just how much it was actually raining, and how out of breath I was already I quailed, however determined I told myself it wasn't far to the bus stop, I had a nice full tank of oxygen and the rain would pass soon. Without too much incident and with lots of help from a variety of kind people Edward and I made it to Hampton Court and down to the river bank.

Edward didn't have a rain cover and stupidly I didn't take a hat either, however I think we coped quite well with a hood fashioned out of a hanky and his changing bag pouch. I used his actual changing mat as a seat, you can tell I'm a real mother now, utterly resourceful :o)

Given all my 'umming and ahhing' I really thought we would have missed the 'grand' launch, however luckly we made it in time and actually had a lovely ten minutes sat in the rain waiting for the ducks to be 'unleashed'.....I say 'unleashed' but I really feel that may be a rather melodramatic way of putting things.

There were some audio-speakers near by and some local radio DJ's were commentating and letting people know what was happening. They were rather rubbish, however did their best to try and gee up the soggy crowd of spectators.

Eventually the finally coutdown began and out came the ducks! For a while they didn't seem to move very fast at all, and then they seemed to pick up speed as they got to the bridge. I suspect it may have just been due to perspective as once they were closer it was easier to see that they were actually moving.

It was quite exciting when they got close enough to see properly. Edward and I had a good peer over the edge to see if we could spot our ducks but funnily enough we didn't. Despite that we cheered ours along anyway aswell as my freind Dan's as he'd asked me to. There were definately ducks out in the lead, then the bulk of them following behind herded along by a team of canoeists.

As the ducks went by the weather picked up a little and there was even a little sunshine which was lovely. I wanted to see the end of the race but it wasn't very easy to follow the riverbank and I wasn't confident about being able to get back given how much it had taken just to get to the waterside. I decided it was better to leave early while I still had energy and was still enjoying myself than to push it and end up exhausted and miserable.

We got back to central London safely, again helped by lots of kind people and now I'm chilled out on the sofa looking forward to cuddles and Trigun later with the gorgeous sexy Luke.

It's good to be me :o)

Pari-Neb Poster boy!

2008-08-30T21:57:00.003+01:00

Not done too much today as we are off to the duck-race tomorrow. I mostly just laid about and slept a lot, I did a bit of knitting and took a lot of Movicol and Gastrograffin as my stomach is blocked, hopefully it will clear before tomorrow though as I doubt there are many loos along the race-course.

In the evening I played a few more games of reversi with Adme, we are both so badly addicted to it at the moment, only sadly he has now cottoned on how to play and so he keeps beating me.

Luke and Edward have both been too gorgeous for words....Edward especially seems to think he is going to be the next Pari-neb poster boy haha!

Yummy Scrummy Dinner Party!

2008-08-29T21:22:00.000+01:00

Starter - Chicken stuffed with basil and hazlenuts served with fresh pesto and mixed olives

Main - Treacle duck with date and parsnip purée, lemon curd carrots and the crispiest roast potatoes known to man!

Pudding - Pear and Belgian Chocolate Cake with squirty cream!

Do not fear dear readers you haven't accidentally ended up on Edward's weaning blog, that is just the menu for my fantabulous dinner party :o)

After alot of planning and contemplating a myrid of things many of which involved grapefruit I finally settled on the above. We made a special trip over to Waitrose near the library as I wanted to get decent ingrediants rather than manky Somefield stuff. The store was really nice, so much tidier and better presented that Scummers, but they didn't have any duck breasts which was most annoying.

We came back to Edgware, Luke started to take stuff off the buggy to take home, but I suggested he may aswell just take Edward back to the flat with the shopping, and I'd try popping up to the delicatesen, which was stupid of me I should have taken Edward home and let Luke go duck hunting. He made me promise not to go to the butchers at Marylebone though as it is too far and he was worried about me. I went to the delcatessen who also didn't have any duck breasts, it was a toss up as to whether it was less far to walk to Somefield or to the bus stop to get the bus to Selfridges. In the end I plummed for Selfridges and hopped on the bus. I had a nice mooch round the foodhall and very nearly bought a stupendous cake, but resisted and instead sampled and bought lots of olives and some fresh pesto aswell as the duck.

I came home and cooked it all up, Luke was annoyed with me as he was worried I was overdoing it :o( I was sorry that I'd worried him I hadn't meant to. Edward crawled all the way from the far side of the lounge to the kitchen to see what I was up to, which was very sweet, though he kept trying to fiddle with the bin so he had to go back.

Everything went quite well, though just as Raj arrived I was having a rather self-indulgent panic hehe! We sat about and chatted a bit and Luke showed Raj the clip of Spore while the starter finished cooking, then we all sat down to eat, it was most tasty and I was so pleased because the chicken did the spiral thing it was supposed to!

There was then a bit of a lull as I decided it was better to eat at a sedate pace and eat well, than try and be snazzy and serve stuff up one after the other and end up wrecking it all! Not too long later though we had the main course and it was most tasty. I think the quantities were way out on the parsnip and date puree though as I ended up with a huge bowl of it, when to be honest, you can't really eat more than a generous spoonful, no matter though it all got frozen for Edward.

We then had a longer rest between mains and pudding as we were all feeling a bit stuffed. We chatted and Luke sorted out 'Company of Heros' on Raj's computer, the long term plan is to have lots of people round LAN all the computers and the boys will all play together and I shall make nachos and other tasty foods...the perfect evening!

The pudding, brought by Raj, was SO nice, we all looked at it concerned it was going to be too dense and sweet and that we may die, however it actually turned out to be really light moist cake, which balanced well with the sticky chocolate, cream and pears inside.

Towards the end of the evening I had to have a bit of a puff on my bird as I was feeling really breathless, but overall I wasn't as bad as I had been the night before which was a relief. Raj evenutally headed off home it is always SUCH a pleasure to see him, and next time he said he may well bring his new girlie!! Most exciting :o)

The Return Of High Priestess Tor

2008-08-27T23:18:00.002+01:00

Many moons ago a story began that went a little like this....

Chapter 1

The Beginning

In a small village called Am-thill on the edge of a dark forest was an institute of knowledge known as the Red-Bornè. Three children all born to come into power studied the moving of the universe there and forged a friendship that would see them through many long hours of darkness.

Lord Jarmies Marquis of the region of Brogborough was a wild character even in the early days. Insane of mind he always proved loyal to the cause and had a particular affiliation with ‘sticky’ spots, and so proved handy for getting out of them.

Prince Adme Lord of the Bog of Eternal Stench, born to rule his vast swamp empire when he came of age, settled well into the position of leader of the group. Fiercely loyal and devoted, a true caring soul he would the form the core of the trio around which their formidable power and light would gather.

Finally Tor, they all knew she was special. The Dean of Red-Bornè, Professor Brook, had her marked as someone who would change the world.

Chapter 2

The Coming of The Priestess

An insignificant journey it had seemed at first, a simple pilgrimage to the musical temple of Marillion. But as Tor had stood in the falling Autumn snow looking up at the high windows of the shrine a vision had come to her. Colourful strands of wool woven together in a scarf of power. Upon her return to Red-Bornè Tor began to knit.

Many months she spent closeted in corners of the institute furiously weaving together the rainbow coloured strands of yarn until finally it was done.

A scarf nigh on 20 feet in length and imbued with the power of light. Every colour of the rainbow glistened from the bright threads as she ran the completed work through her hands. ‘Adme it is done’ Tor cried out!

‘Hurrah’ Adme cried! Then Jarmies came running up to see what was going on ‘Oh wow that scarf should not exist!’ he shouted with glee grabbing the scarf and running round the room with it.

....Sadly the rest of the adventures were lost in the mists of time, broken phones and deleted text messages, which is a terrible shame as they were quite hilarious and told wild tales of sailing over vast oceans in washing baskets eating jelly-babies and drinking pink champagne. Also distant now is the tale of how, for one grand, perfect and beautiful day High Priestess Tor became a Goddess, but from that she fell, she fell a long way, until she lay broken holding nothing more than a ring that was just a band of gold and a twenty foot scarf muddy at it's ends.

Thus High Priestess Tor's days of knitting drew to a close, and the scarf full of faded magic and mud was folded away and put at the back of the wardrobe on the threshold of Narnia where it belongs, only dug out on the rare occasions that she is reunited with her Marquis and Prince.

That is until today.

The wool has gotten more tasteful, and the general aims a lot less fantastical, but nevertheless begun again has the knitting and returned has the priestess.

Mwhahahaha!!!

2008-08-25T16:25:00.004+01:00

The fat grey mouse is dead!!

The fat grey mouse is dead!!!

Hurrrah!!

Hurrah!!

Mwhahahahaha!!!

..............you're next little black kitchen mouse!!

I was so tempted to take a photo, but I thought that would just be too disgusting, he was sat in such a funny dead pose at the back of the trap, like a fat portly man from a Dicken's novel with his nasty clawed little feet resting on his fat peanut butter filled belly, oh he looked so smug, smug and dead....victory is mine mwhahaha!!!

Poppy Puppy Sitting

2008-08-24T15:18:00.000+01:00

Some band are playing somewhere in the world and so once again it befell me to go and dog sit for the rents. Sadly not long after I went up last time little Bertie had to be put to sleep as he was just not getting any better, however he has since been replaced by Poppy the puppy soon to be joined by Carmen from Battersea.

The run up wasn't too bad, apart from the bit where my i-pod played 'Season's End' the first Marillion song I ever sang to Edward when he was just a few days old causing me to burst into tears! Alex, my brother, and his chum Tom picked me up from the station and we went and collected the sewing machine I won on ebay for a stunning £5! As I suspected, given its age, it is hideously heavy and I began to plot how on earth to get it home.

We then went to the supermarket and got some nice easy microwave food and a few other snacks including some rather scrummy jammy dodger bars which my friend Jo raves about all the time.

When we got in Poppy was terribly over excited and got caught between saying enthusiastic bitey jumpy hellos and piddling so opted for both at the same time....nice! After we'd sorted her out we made nachos and cheese and pizza and all headed out into the garden where we proceeded to stuff our faces and play with the pooch.

Late afternoon as it started to cloud over we headed inside, and I went for a nap. Not long after Alex got a call from his work (who technically he'd just worked his last shift for) and so he went off to that leaving Poppy in with me. She thought it was a fantastic opportunity to eat the contents of the guitar room, rather boringly on my part, I didn't agree and so took her back downstairs to the lounge where I proceeded to vegetate.

Alex eventually got home and we watched lots of youtube stuff together including a truly hilarious re-working of the Nickleback track 'Rockstar' it is too all intent and purposes the sequel titled 'Popstar'

I then headed to bed as my nap had been rather short-lived and puppy filled!

Saturday we both woke up around 7.30, I sorted the puppy while Alex got ready to go to Reading Festival with his girlie, it was nice though as we got the chance to eat breakfast together before he headed off.

The rest of the day was rather boring on the whole, I was really tired and the house was so messy and dirty it made my asthma really bad so I didn't feel well enough to move far without ending up gasping. So I read FHM and watched lots of really bad TV most of which I'm too ashamed to even name, however come the afternoon the x-factor marathon began and so I watched that and bitched about all the crazy loons with my sister on msn as she watched it, though she kept going off to the loo and to get food and stuff and so kept getting out of sync!

I also chatted with my chum Nick who I haven't spoken to for ages which was really awesome as though we often say 'hi' on msn we hardly ever have a proper conversation as we've both got a bit lazy, and I'm always distracted, I also have less to say these days as my life is happy and I'm content, sad that, you'd think I'd have more to say than when I was miserable.

Eventually I headed up to bed and took Poppy with me as she's not used to sleeping on her own yet. She had a really mad few minutes when she first got upstairs literally bouncing off the walls, but once the light was off she soon settled down. Overall though I didn't sleep well that night as I was so paranoid about her peeing on the new carpet also she kept waking and moving about and trying to cuddle my head.

At around 5am she finally woke up properly and started pawing me and the door so I took her out for a wee, and gave her some food and water. I then left her in the kitchen hoping it wouldn't be too weird for her as I figured it would just be like being left there when everyone goes off to work, as I REALLY needed more sleep as I was feeling so ill and it was so early. At about nine I woke to her whining so went down and let her out. She had attacked a plant and spread that all over the floor and more worryingly turned the oven on.... I was just SO glad it wasn't the hob as my parents have a huge gas range cooker, which like every other surface in their house also serves as a dumping ground for crap, if she'd hit the hob rather than the oven god knows what would have happened!

I cleaned up the murdered plant and we went back in the lounge and again vegetated till Alex got home with Emma and he then took me to the station, he helped me onto the train with the sewing machine so I didn't have to carry it far.

I chatted with a nice lady on the train who even offered me a lift home, however I didn't want to hold her up as I knew I was going to be slow and that I'd need a trolley for the machine. So when we arrived we said our goodbyes and headed our separate ways. When I got in I went straight on my bird and then had a sleep with some Oxygen for a few hours till I got woken to the delightful sound of Edward screaming his head off!!

It turned out he'd decided to remove his nappy and smear himself in poo while Luke wasn't looking, and then had the cheek to take objection to being hosed down.

While I was gone the boys had an ok time, apparently Edward wasn't too whingey which he often is when I'm gone Luke also used the re-usable nappies, I hoped this was a sign he was finally converting, but sadly no, he just could not be arsed to go to the shop for Pampers. Edward is pretty much mobile now as he's worked out how to pull himself along on his belly aided a little by his legs, and he kept crawling round and trying to poke his fingers into Luke's computer....oh dear we knew this day would come.

The finest Chocolatier to ever befriend a Spaniard

2008-08-21T19:10:00.006+01:00

Today has been one of awesome fun and giggles!

After a terrible nightmare overnight where I never made it to Reading thanks to 'Bianca' from Eastenders and an overdue library DVD I ended up waking up relatively early paranoid it may come true and I may accidentally miss my day out.

I was quite nervous and excited as I haven't really been on a day trip with Edward to see a friend outside of London, so I worried I would forget to pack something. Sometime later and totally over-packed we headed out to Paddington via the post-office to post the faulty rat-trap back to the Amazon.

The train journey wasn't the most pleasant as it was packed with Reading festival goers some of which were rather unaware of their bulging rucksacks. I did however get a seat and spent the journey softly stroking the sleeping Edward's fluffy head.

We pulled into the Ding, it was SO nice to be back, this place has been many things to me over the years, but without fail is somewhere I have a good time, so well after a year of promising myself I was going to go it was really satisfying to finally be here!

We fought our way off the platform past all the be-wellied and be-tented ones and met Mr Chris by the door. We made a b-line for the festival-goer-free part of town and ended up by the canal where there was a small 'beach' that had obviously been set up for the summer. We were very tempted to let Edward to go mad in the sand, but decided that having a sand filled baby for the rest of the afternoon would be unwise, so we just sat and chatted and got given freebies by some girls from Lush :o)

After much debating and much indecisiveness on my part we eventually decided to go to New Orleans or was it Old Orleans? I doubt it's age makes much difference, it had table cloths you could draw on and that sold it to me! We had yummy foods and drew many beautiful pictures of our old characters from the role-play game we used to be in together where he was a Spaniard and I was cat highly skilled in the art of chocolate making....for no reason at all and for one day only Batman joined the party too!

We were tempted to take the table cloth at the end but decided a photo would suffice
I think it is fairly obvious which ones the talented Mr Chris drew and which ones I scrawled!

After main lunch we headed over to Krispy Kreme for pudding. I have seen these shops with increasing frequency and have heard many people rave about them. I must admit they were most tasty, by far the best doughnut I've had in years, and not too overpriced especially in comparison to any cakes from somewhere like Starbucks.

We then went to John Lewis to buy me some wool as my knitting needles arrived this morning. I am planning to join a knitting group so keep you eyes peeled for that forthcoming adventure. Afterwards and clearly in need of more wool, two balls not being enough for someone who can't actually knit, we decided to brave the ever so slightly creepy family run department store where they still write receipts by hand and send money round the building through weird vacuum powered tubes. It turned out to be much more affordable that John Lewis and is where all my future wool purchases shall be made...Mr Chris can't wait ;o)

It was actually a lot more sunny than this photo indicates...
....hurrah for over packing though as it meant we had a blanket

We then decided to go up to the park and sit in the sunshine, which is what we did indeed do, and where we spent the rest of the afternoon chilling, chatting and trying to persuade Edward that leaves and Mr Chris's shoes did not constitute good food....I don't know you feed a baby one chip and a crumb of doughnut and they go junk-food craaaaaaaaazy!!

Everybody has a fetish for Mr Chris' shoes it would seem!

It was finally time for Edward and I to head home and for Mr Chris to wander off to band practice, he walked us up to the station and we managed to get almost straight on a train, but not before I accidentally blasted poor Edward in the face with the hand dryer in the loo...ooops!! Quite funny though mwhaha!

All in all and utterly fantastic day and now I know how close it is, and how easy it is to get there, I'm sure I will once again become a regular visitor to the glorious glorious land of the Ding.

The Bird Has Landed!!!

2008-08-21T16:11:00.001+01:00

Hurrah!! Finally after a VERY long wait, lots of faffing, oxygen contract jiggling and the delivery of a stand my Bird Mark 7 Respirator is finally here and fully operational!!

This machine is basically an old fashioned ventilator that I use to help me with my physio. I take a small breath which triggers the machine, I then keep breathing as it forces more air and oxygen in under pressure inflating my lungs far more than I have the strength to do on my own.

It has a number of advantages;

It is significantly less tiring enabling me to do better and longer physio sessions even when I'm really unwell and breathless

It forces my lungs open further than I can under my own strength which is great as it stops all the weak little damaged tubes from permanently sticking together and forgetting how to move

It enables me to clear even really thick sputum from really small airways as I can direct the pressure into where I need it and get it behind the sputum, normally when I'm tired it takes so much energy and strength to direct the air it's hard to also take a deep breath at the same time, this solves that

It is oxygen powered, so I get less breathless whilst doing physio which enables me to do longer sessions

I can put ventolin directly in the device saving me a bit of neb time, and also keeping the vent. dose going in throughout my treatment whilst also getting the drug into much deeper and smaller airways

All in all a truly fantastic bit of kit and I'm overjoyed to have it as I'm hoping it will help me keep myself well, and maybe even, fingers crossed, see me improve my baseline lung function... Big big thankyous to all the many people who've helped me get hold of one I know it's taken lots of long phone calls and letter writing.

Unforgiveable Apathy

2008-08-20T21:13:00.017+01:00

I've been SO lazy today, and I haven't really even felt guilty about it, I just cannot be bothered to do anything even though there is plenty that needs doing round the house.

Apart from looking after Edward and myself today I have done almost nothing other than vegetate on-line and in-front of the TV. In the morning I did speak to a journalist on the phone, she appealed for people with baby stories on my birth-club and I put us forward as I thought we'd make a good story and I know that the magazines can pay quite well, I'm also hoping we may get a nice family photo-shoot out of it.

Mostly I think I'm recovering from yesterday and preparing myself for tomorrow's trip to Reading to see Mr Chris.... I shall leave you now with many beautiful photos of my gorgeous gorgeous boys, I have probably put too many similar ones up, but they are just so heart-warming I can't choose between them :o)

Edward casting magic spells....we suspect 'summon milk'

I'm telling you Daddy that IS the way it's cast!

Oh Daddy you're so funny!!

BUNDLE!!!

A Lovely Evening Out

2008-08-20T13:06:00.000+01:00

Cousin Emily came to babysit Edward yesterday so that Luke and I could have a night out together. I spent most of Monday afternoon looking at all the restaurants and things to do in London trying to choose what to do and where to go.

We looked at a cruise and dinner on the Thames, there are some nice ones available but it was a little bit too expensive for just a normal evening out, we were also a bit worried about getting to the dock in time to catch it. We also looked at some dinner and theatre packages and again there are some good ones available especially for Wicked which is the show I'd most like to see, however again this was a bit pricey and we were worried about time.

We then decided the best thing would be cinema and a film, however after looking at the listings we decided there wasn't really anything on we were prepared to pay £20 to see, annoyingly Hell Boy 2 isn't out yet as we would have gone for that. We thought of going to see Batman but I haven't seen the first one, in the new series, and also we wanted to see it at the Imax however the only screenings with seats left are in the middle of the day around two, or midnight...tempting but I just know I'd fall asleep.

So all in all after lots of unrealistic over planning we decided to keep it simple and just go out for a nice meal. I narrowed it down to a Burmese place that sounded really friendly or a theatrical place in the West End that has opera singers and such walking around and is decorated like a theatre, I left in Luke's hands to choose which one he wanted to take me too....he chose a Thai place on the river that we'd walked past when we went to see the Telectroscope.

We spoilt ourselves and got a taxi, Luke wanted to keep it a surprise as to where exactly we were going and so I put my fingers in my ears jokingly. As we drove the taxi driver kept pretending to let slip the surprise asking things like 'so what time DOES the London Dungeon close?' finally he dropped us by Borough Market telling us as he did so that it is where they filmed lots of 'Lock Stock and Two Smoking Barrels'. I love it when you get proper London cabbies that banter and tell your touristy things, it makes the taxi ride into a real event.

Luke was a bit disorientated and couldn't quite work out which way to go, I guessed at this point we may be going to one of the restaurants on the water front, and even suspected the Thai place as he knows that's my favourite cusine, so I pointed the way to the river-front.

I was indeed correct and we went in, we thought they were going to seat us at the nice table by the window but it had been reserved for someone else so we got put in-front of a wall! It didn't matter though because I was looking at Luke as he is SO sexy and gorgeous.

The food was beautifully cooked and the place had a real 'out of London' vibe, I think because all the tables were well spaced and we didn't end up spending dinner listening to the next tables conversation like last time we went out for dinner. We talked about lots of things, such as our friends and travelling, I made a real effort not to talk about Edward too much as this was 'our' time.

After dinner we decided to try and catch the last 'flight' on the London Eye however even though it wasn't too far down the river there wasn't any clear route to it. We spent more time wandering down roads with traffic on them, that on the romantic river front, which was a shame, but we still had an enjoyable time. We got to Blackfriars around the time the Eye shut and so decided to give up and head home, I fell asleep wrapped in Luke's arms on the tube.

War Bulletin

2008-08-19T15:18:00.002+01:00

I have been informed by one of my spies that the mices did in-fact make a cheeky move last night, there was much leaping and scurrying and running under the desk....fools...did they think I wouldn't find out??

Amazon have informed me that the trap is now out of stock and so I cancelled my order through them and have placed one with another company for the same product...what a kerfuffle!

Update on the War

2008-08-19T11:51:00.005+01:00

The mouse trap arrived...hurrah!!

The mouse trap was faulty...boo!!

All has been quiet here on the Western front, not a squeak nor a nibble has been heard since I saw them last week. I think the mices must have caught wind of my evil plans....I knew I shouldn't have cackled quite so gleefully when I plotted their downfall, it is the typical bad guy mistake to give away the evil plan before they are actually dead thus giving them time to escape dam dam dam!!

On the plus side Amazon are already shipping me another and paying the return postage (so they should) so hopefully in a few days the war will truly begin in earnest.

You've got to have Faith

2008-08-17T20:26:00.005+01:00

I sell this pretty baby to you pretty lady... I give you good price...free dribble!

We had a chilled out morning Edward and I had a lovely breakfast together, he did really well feeding himself. I finally managed to do the washing today and Luke did the kitchen all good.

In the afternoon Faith, a friend of mine from uni came over and we had a good girlie gossip and cuddled Edward, she was amazed by how much he had grown and how much more aware and interactive he is now compared to when we went for a picnic back at the start of the summer. She has also (foolishly) added herself enthusiastically to our list of babysitters, hurrah! So hopefully she is going to watch him one afternoon in a week or so's time so Luke and I can go and see The Dark Knight at the I-max cinema.

In the evening all three of us cuddled up and watched more Trigun, I'm loving it more and more, Vash is so awesome, he reminds me alot of Luke :o) The best bit was when Edward decided to grab Luke's face so he couldn't turn his head and 'forced' him to keep watching!! Hehe!!

I love my boys and I love my life, I am a lucky lucky girl :o)

Munchausen by Internet

2008-08-16T21:04:00.006+01:00

It is a sad day today in the American CF community, and the CF community as a whole. There has been a blog running about a girl called Pepe who supposedly had CF and went through a transplant, the person has been exposed as a fake, or probably more acurately someone suffering from Munchausen by Internet.

I was not an avid reader of the blog, I don't know why but I just never got around to checking it regularly, however it did have quite an audience of people who were hoping and praying for Pepe and who were utterly emotionally, and in some cases financially, involved in the story.

It has annoyed and upset me, despite my lack of personal involvement, on principle. Although I wasn't involved in her story there have been others who's story I have become involved with such as Emily's and Oli's, I can't imagine how utterly betrayed I would have felt had either of their blogs turned out to be hoaxes. There have been some very low points in the last few years where literally the only thing that has got me through to the end of the day has been a little voice in my head saying 'If Emily and Oli could do this, worse than this, then you can too!'.

It is a disgusting manipulation of the emotions and trust of the CF and transplant community, a community that is made of vulnerable people.

Almost more scary however has been the way sections of the community has reacted, someone has set up a blog literally, and very successfully, stalking this person and every website they have ever contributed to, many have made violent threats. I understand the anger, but at the same time it is just the internet, you can just never truly know unless you KNOW that person in real life, it never ceases to amaze me how het up people can get over someone they don't know!

It has served as a reminder to me just exactly what the internet is made up of. I am always telling friends off for posting details that link them to a specific place or taking part in those stupid 'what's your porn name' things that are just designed to get personal information out of you. Even today I have been sat here thinking back over all my posts and trying to work out if at any point I've given too much information away about where we live and what are lives are like.

I guess that is the problem with a blog, you want people to see it and read about you, but at the same time you don't really want people to know anything too personal. My friend Adam and I actually discussed my blog and he commented on how different it is in style to my old one which was much more emotional and detailed. I admit that even I at times look at this blog with a certain level of dislike, it's a very 'happy clappy this is what I did today' kind of affair, there is very little in depth analysis of how I actually feel and what I think about things, but then I think I have become more aware of my potential audience

This a totally public forum after all, any future employer or client of mine could read it and I'm not sure I really want them to know all the dark emotional wrangling that goes on in my little mind, nor do people I know read this really want to know the gory details of what Luke and I do with chocolate buttons of a nighttime ;o)

I don't want to be at risk, I don't want my family to be at risk, yet at the same time I like having a blog, I even stated it as one of my hobbys on my birthclub, and heaven knows I have few hobbys as they are hard things to maintain when you are unwell and have no energy all the time. I guess you just have to be careful.

I find it amazing how involved strangers do become (and I write this like I'm not one of them haha!) but when you read these blogs you really do begin to feel like you KNOW the people involved and begin to share their hopes and ambitions with them, and cry and worry at their troubles. On some levels it scares me, and on other levels I think it is actually the true power of blogging, the way it gives people a platform to speak and an audience to listen, an audience to care, I think it brings out the best of the human spirit, and demonstrates far better than any myspacefacebook can what true social networking is about, it's not some empty list of 'friends' it is about connecting, and about caring, you give up something of yourself and in return you get something back.

So back to normal happy clappy scheduling we go...

Thursday - was a day of rest, I laid about the house and did nothing but snuggle with my boys adn watch DVD's in order to recover from the excitement caused by the mices and ballerinas.

I watched 'The Last King of Scotland' it is VERY good, though very sad as basically it's happening all over again as we speak in Zimbabwae and yet again to my shame it is us English who had a major hand in putting a madman in charge.

However I am also angry with the people of Africa as I whole, why don't they get their shit together and sort themselves out?? They could be a rich nation they have lots of valuable natural resources and a lot of manpower, if they just stopped bickering and squandering it all on corruption and guns and stopped shilly-shallying about waiting for someone else to sort it out they would all be a lot better off!! That said if I had a bunch of guys in a jeep with massive guns riding through my village shooting and raping everything in site I don't suppose I would be that keen to make a stand and make a change either. Sad world.

I thought the most clever thing about the whole film however was how little it showed of the ongoing genocide, despite the fact the characters were right at the centre of it. It demonstrated exactly how these atrocities happen and continue to happen, because those who could do something choose to bury their heads in the sand because they personally have something to gain from doing so.

And if all that heavy political stuff doesn't do it for you it also has lots of shots of James MacAvoy's bottom in it :o)

Friday - I meant to take Edward swimming but his skin was so bad I thought it unwise as I didn't want to aggravate it. So I spent the morning supervising Edward's nappy-free time whilst watching 'No Country For Old Men'. It was a good film, though I think it thought it was more intelligent than it actually was, I felt the serial killer was a silly character who spoilt the film and they just used him as a device to say certain things, but as he was so melodramatic and cliché they'd have been better off leaving him out, Tommy Lee Jones however was utterly fantastic.

I then took that and the other DVD as well as some books back to the library as they were only on short loan. I left Edward in his daddy's capable hands as I couldn't be bothered with heaving him on and off the bus!

I wandered back slowly via some shops where I got some nice candle/sauce dishes and then the pharmacy. Luke cooked us dinner we had tasty chicken kari...he's branching out :o)

Saturday - I had a lovely long sleep from 11pm last night till 8.30 this morning!! It was truly blissful :o) I think the sleepies must have stayed with me as I really haven't done much all day expect faff about on-line. I planned to go and get maple syrup so I could do American pancakes which I have been craving lately but in the end lazed out and just made Luke a plain bacon sandwich.

In the afternoon/evening I made roast beef, Edward particularly liked the Yorkshire puddings :o)

After Luke finishes raiding with his WHOLE guild (very exciting stuff I can tell you!) we are going to watch some more Trigun which is turning out to be rather good, it really makes me want to roleplay though as the structure of the episodes feels so much like an RPG plot, it really makes me laugh as alot of the time the animation of the lead character is naff......but whenever he is saying something profound or trying to chat up a girl they sex him up manga styleeee!!

Mices and Ballerinas

2008-08-13T22:10:00.006+01:00

We have mice...there have been rumours that we had them for some time, but last night they made their most ambitious move and came out of hiding and scampered back and forth across the lounge and then I went in the kitchen and there was another one of the little cretins, he may have run off the counter and behind the dishwasher at speed, but not speedily enough, I saw him!!

This morning I ordered wire wool, the pest control recommended hole blocking device and an all signing all dancing all electrocuting vermin trap! I did consider getting a good old fashioned spring loaded one, but I figured this is central London and that mouse was a porker so he's not going to fall for that and it was best to just get a good trap to start with, and this seemed to be highly recommended on Amazon by lots of people with mice that had outwitted simpler traps.

It is amusing but there is something about rats and mice in the house that brings out the animal in you and makes you go all primal. Luke last night was stalking the house like a true man with a club, while I may or may not have squealed like a big fat girl every time they ran out of their hiding places. I feel I am quite traumatized by childhood images from 'The Lady and the Tramp' where the rat attacks the baby, complete with the hysterical shrieking granny, if you haven't memorized said film see the relevant scene in this YouTube clip about 4 minutes in. I will NOT have nasty mice nibbling my Edward!! This morning WAR was declared and I am going to win mwhahahaha!!! Your days are numbered little mices!!

Having plotted my warfare suitably I then took Edward to the library to the song and games session I have been meaning to take him to for over a month. We got there to find it was a special session and they had guests in from The Royal Ballet, namely a ballerina and a flute player. It was really good fun there was lots of movement, and a story, and then more moving and dancing about as we, *cough* the children acted out bits of the book. Bouncing Edward about and waving his arms and all the general prancing got quite tiring after a while though, and some of it I couldn't really work out a way to include him, so towards the end we just sat and watched. He really enjoyed it though he was quite tired by the end. I found it most amusing to watch all the little girls go green with envy as they watch the professional ballerina do lots or graceful ballerina moves, and smiled as they all tried their very hardest to copy her.

After getting out a few books for Edward we went to the grown-up library took a book back, and got out a few books, DVD's and an X-box game called Timeshift I quite liked the look of, Luke was SO impressed with me when he saw it :o)

After that we went to the doctors and dropped off my prescription, then Boots to get baby rice, Edward helpfully nibbled the box while we waited in the queue, and finally to the supermarket to do the weekly shop, Luke came down and met us there as I needed his manly strength to carry all the heavy shopping.

When I got in I was tired, but not exhausted, it's amazing what a few good nights sleep will do for a girl!

In the evening I puréed some apple for Edward. For Luke and I, I did gammon, for myself I made broccoli and courgette in cheese sauce. It didn't work terrible well as the roué went lumpy, sadly my quick browse of the internet yielded the most rubbish recipe of all time, I'm certain that next time it will be better.

On the weight issue, I weighed myself and I don't weigh as little as I thought which is good news, on our scales I came in at 49kg, not great but not as bad as I had thought. I did my feed last night, it alarmed many times throughout the night waking me up, and at 3am I actually had to sit up, switch the light on and fiddle with the drip chamber to get it working again argh!!!

Simple Measures

2008-08-12T20:53:00.004+01:00

Edward the teaspoon

Daddy the serving spoon

Mummy the desert spoon

Today has been a MUCH better day, we've all spent lots of time cuddling and playing together, we also all watched 'Hell Boy' together cuddled on the sofa. Edward has been in a much better mood, I'm not sure if it's because his teeth hurt less, because he had a better nights sleep,or what, but it's been lovely to have my happy content little baby back, I've really missed him.

I've felt a little better today, I'm not sure how much of it's physical and how much is mental, as I still wasn't able to get all the things done I wanted to, but I think I was just in a better frame of mind and was more chilled and accepting...it can always be done tomorrow!

This morning Edward's new keyboard arrived, it's dribble proof, 'key-removing-srunchy-finger-proof' and can be dunked in the sink when it becomes sticky and disgusting!! Edward and I had a bit of a play when it first arrived, but the serious playing began when Luke woke up....my little programmers :o)

Exhausted and Incabable...

2008-08-11T21:08:00.005+01:00

... that's how I feel today, it is very depressing and upsetting. I was meant to take Edward to be weighed and measured today as I haven't been for ages and it needs to be done, I also have a few questions I want to ask the health visitor.

There are a combination of factors I think that are making me feel unwell. My chest is obviously not great, and I'm not clearing well during physio still, however I don't think I have a raging infection and Luke agrees as I tend to smell different when I do. I think my weight is playing a major factor, I don't know how little I actually weigh at the moment, which is naughty of me as I've been supposed to be making an effort to put on weight, but I'm struggling. The stupid thing is if I do my feed the weight would go on without any problems, but I just keep not doing it, there are reasons for this.

The first and most obvious is just sheer laziness and not being bothered with all the faff of setting it up each night and taking it down each morning, however that plays a relatively small part as I know full well I can ask Luke to get it for me.

The second reason is exhaustion, I'm so tired and desperate to get a good nights sleep I am reluctant to hook up my pump as it frequently alarms in the night, I also worry constantly about it leaking, and will often wake with a start when I lie on the cold tube thinking it has disconnected.

Thirdly I worry about getting tummy ache and feeling bloated, it is a lot of milk and a big strain on my digestion which is really not working well at all at the moment. It's hard to motivate myself to do something I know is going to give me tummy ache.

Finally since my pregnancy I have had some very bizzare issues relating to body confidence. It is VERY unlike me and I can't really understand why I've suddenly started having problems with this aspect of self-confidence, I assume it must be some strange consequence of the hormones and perhaps a subconscious adjustment to my new identity as a mother. I know I'm not fat, I know I can easily be about 55kg before I get fat (I suspect at the moment I'm more like 45/48jg) however any weight I put on instantly makes me feel really fat. I think mentally I could overcome this if it wasn't for the fact that the feed makes my tummy bloated a lot of the time, and so I get a really fat lower belly, which looks even worse at the moment as I'm so thin. I know it's silly and shallow but it's how I feel and I'm struggling to overcome it constructively.

I think the knowledge that if I did do my feed the weight would pile on without problems (aside from the ones mentioned here) is almost a downside as it makes me complacent which I shouldn't be as a high weight is a good safety cushion to have.

Today has just been ridiculous, the only reason I managed to do what I did (namely tidy the bedroom and make the bed) is because I bought this lovely new bedding for Luke and I ages ago but we have been waiting for us both to be here, and for us to have the house to ourselves before we put it on. I wanted to get it done as I wanted it to be a nice romantic surprise for him when he got home.

However I wanted to do so much more, there were some lovely ideas I had about getting some chocolate buttons for us to eat together. I also had some other things I REALLY needed to do today such as put in my prescription, getting Edward measured as I said earlier, as well as taking him swimming, It was so frustrating to know I just couldn't do it.

I started to get quiet upset as I was just so exhausted, I just did a few tiny bits and then had to lay on the bed with Edward for about half an hour despite having had a lie-in this morning (after sorting Edward first thing). This has been going on all of the last week or so, I have frequently been having to nap in the day, and even on days I haven't actually had a nap I've seriously thought about it or had to have a bit of a lay down and a rest, this is despite having done hardly anything really...today the cumulation of it all caught up with me.

It makes me worry about what kind of mother I'm going to be to Edward and what kind of girl-friend I am to Luke as I'm not that nice when I'm tired, I get grumpy and impatient. I know I haven't been very good with Edward the last few days when really he needed me to be understanding. I am also really stressing about uni, I just keep thinking if I'm this tired when I'm doing nothing, how am I going to cope with two mornings a week at uni.

I then think that part of the reason I've become so weak and pathetic is exactly because I've done nothing for over a year. Yes I have a bunch of baby activities lined up I could go to weekly, a bunch of friends I want to go visit, as well as ideas for things Luke and I could go out and do together, but they are all optional, so the minute I feel a bit feeble it's easy to bail out, there is nothing to push me and force me to go, which I don't think is a good thing, I think I need that push.

*sigh*

I don't know how much of this melancholy stems from a conversation I had with a friend of mine last night about transplants. She had one a few years ago and now has a lung function of 80%. I would love to be that well again, to be that free again, it is so frustrating and imprisoning to be this ill all the time. I just want a break from it, just to have a few weeks of being well so I could get on and go out and do all the stuff I keep putting off because I feel to tired and unwell. I know I shouldn't wish myself to be unwell enough to need a transplant, but hovering just above the boderline where my quality of life is questionable, makes me kind of wish I could just have one, get it over and done with, and get on with living.

Anyway...

Luke took Fred home today, it was lovely having him here, it was so sweet to see him playing with Edward who he adores, it was also nice to see Luke having fun playing with his little brother.

I really enjoyed having the house to myself, it's such a rare thing as Luke hardly ever goes out without me, and if he does it's usually just to pop to the shops, it's never for very long. So it was a treat especially after it's been so manic here recently with all sorts of people coming and going, it was nice to have my nice quiet house back to myself.

Even more than the space though I enjoyed the anticipation of expecting Luke to come home to me, it may sound mad but I think it says a lot about a relationship if you miss the person you love and really look forward to seeing them again when you are apart, even if it is only just for an afternoon :o)

Edward checking out the newly made bed!

Sunday Lunch and TOOTHIE-PEGS!

2008-08-10T19:51:00.003+01:00

It's been a quiet few days since the butterfly trip, we did mean to go and see a Chinese Theatre production in Trafalgar Square but got up too late in the end!

I have to say it will be REALLY nice to put Edward back in his own room tomorrow once Uncle Fred has gone home. He's a gorgeous baby but I've been sleeping in the same room or bed as him for over a week now and he's been in our room quite a lot before that as we've had various people staying over, I think we just unsettle each other, my coughing wakes him and his shuffling and grunting wakes me!! This morning I actually evicted him, cot and all, from our room as I desperately needed more sleep!

Today we had my old friends Gosia and Bartek over for Sunday lunch. We had roast porky-workies and the crackling worked really well which I was very pleased about. We mostly just caught up on what each of us has been doing as we haven't seen each other for a few months.

By far the most exciting thing to have happened is that Edward has finally cut his first little tooth! It explains why he's been so grumbly and horrible recently, I just hope we get a bit of a break before the next one comes through as it's not nice to have him so unsettled all the time as he obviously isn't happy.

Butterflies and Cake

2008-08-07T17:13:00.003+01:00

Today has been a lovely day. After a lazy start my Mummy Chummy Shaune and her son Xander picked Edward and I up and we drove across town to the Natural History Museum.

When we got there, there were signs saying 'buggy park' and we got worried we'd have to carry the boys round, but hoped we wouldn't have to as both of them are quite chunky now. However when we bought our tickets it became clear we did have to carry them, we hesitated a little but decided that we should do it anyway as we'd planned this all week, and I've actually been wanting to go to see this for ages.

There was a maze thing where you could get a card stamped at all the different sections, however the boys were too young for it and we were too old! We both agreed it would have been really fun if they'd just been a bit older. At the end of the maze was the butterfly house.

We went through and were immediately hit by the heat and humidity, all four of us instantly started sweating which was a bit of a worry with the babies. They both instantly spotted the butterflies and both were totally entranced watching them fluttering around and eating from the flowers and settling on the leaves. They were really beautiful, all such vivid colours, some of them were so large though they were a bit unnerving.

We walked round slowly letting both of the babies have a good look at everything, whilst also of course having a good look ourselves. We had a bit of a perch on the bench as our arms were killing us by that point and took some photos, both of us agreed we don't have enough photos of us with our babies, nor do either of us have many 'family photos' so it was nice to take a couple, it was a shame we didn't have the buggies or it would have been a bit easier, and we would have been able to take some of the butterflies too, but never mind.

When we came out it was such a relief, though previously it had felt muggy, in comparison to the hot butterfly house it felt positively fresh!

We then walked down to the gorgeous cakie shop :o) It does the most magical tasty fairy-tale cakes covered in ridiculous amounts of colourful icing and sprinkles in all the world!! I finally got to try their red-velvet cake, I had bought one before along with a pink cake one time when I was in the Brompton, though I gave the red-velvet cake to my friend Sam who had been stuck in for ages and needed cheering up.

We chatted and ate our cakes, and when we finished we headed back to the car as Xander was starting to get hungry, poor thing he's also teething quite badly so wasn't a very happy chap.

In the car on the drive home Xander was crying and it frightened Edward and made him cry, it was so funny as they kept setting each other off. Shaune and I decided we would be like those horrible mothers that make you play with a child you don't like just because the mums are friends!!

All in all a lovely day out and I'm really pleased that I've managed to do a 'baby thing' as I've been a bit rubbish recently at getting up and out and making myself do things....you never know we may make it to the swimming pool tomorrow!

Locked Out!!

2008-08-06T21:18:00.002+01:00

It's been a rather lazy few days since I got back from the wedding, really I have lots to do as the house is a tip and there's hardly any puree left in the freezer but I've just been pretty tired out.

Yesterday I literally did nothing but watch i-player and TV and generally laze about, I didn't even cook dinner we got a take-away hehe!

Today hasn't really been any better, I've written a few e-mails to people I've meant to write to for ages. I put a bit of washing on though I doubt it's going to get hung up today haha!

We finally headed out to buy some food early evening as we'd pretty much run out, we walked out the flat, Luke pulled the door shut, and as the lock clicked we suddenly realised neither of us had keys or our phones! We tried going down to see if the porters had a spare set, which they didn't. We stood in the street for a bit panicking over what to do, we considered rushing up to the estate agents to see if they were still open and if they had a set, obviously couldn't phone them as we didn't have our phones. We also considered Luke shimmying up the drainpipe though neither of us were keen on that plan. Thankfully just then our favourite porter walked past and I asked him if by any chance he had a ladder, he did and rushed off to get it for us. A few minutes later Luke was up that like a monkey and in through the window, I wish I'd had my camera as the sight of his legs disappearing through the window was hilarious!!

After that drama we finally headed off to the supermarket, got round relatively quickly, and I even managed to quite accurately guess how much we'd spent before it went through the till. Poor Luke and Fred nearly died on the way home carrying it all though as we got lots of heavy veggies and meat!

When we got in I fed Edward while Luke started dinner. Then Uncle Fred and I gave Edward a bath. Luke then fed him his milk and put him to bed while I cooked the dinner namely very lazy, but very tasty nachos and cheese :o)

A VERY English Country Wedding

2008-08-04T20:42:00.009+01:00

Edward looking SO impressed with the whole camping gig!!

This was as much a weekend away with my family as it was a trip to Fleur's wedding, our only chance this summer to all spend time together in the glorious Crossland caravan.

Edward-Tedward and I headed over late morning, the trip wasn't too eventful and thankfully we managed to get on a fast train, though annoyingly it had really narrow doorways so there was a rather messy shoving moment as I rammed Edward onto the train!

Alex then picked us up and we headed to TESCO's to get food and nappies for Edward as they had been to heavy and bulky to bring with us. We then headed out to Mothercare and Next. Mothercare had sadly shut down though actually it turned out to be a good thing as Mummy had already bought the cot I meant to buy and just forgotten about it! We went into Next to get Alex a tie, and found a nice grey one with purple stripes that went with his shirt, the customer service was appalling though and what few staff there were there were all half asleep and so it took about three hours to get through the till!

We then headed home where Daddy was already waiting for us. We chilled for a bit killing time before Mummy was due to finish work, we then shoved the last few things in the Landrover and headed over, we got a call from Mummy just as we were leaving to say the person she was caring for had just had a fit and so she would be late. Actually as it worked out we didn't have to wait for her for too long, and I don't think it made much of a difference to the traffic which was relatively clear all the way, well at least I think it was I was actually asleep most of the journey, despite having major chest pains that I thought were going to land me in hospital :o(

When we got to the site I waved rather feebly out of the car at people before hiding in the bed with Edward and going to sleep, Grandmummy did all his bits for me as I was feeling too weak and in too much pain. That night I had a really high temperature but mostly slept through it, and Edward was relatively good and settled though did wake up quite early.

The day of the wedding we woke early and had a bit of breakfast, there was lots of rushing too and fro, and grumping from most parties. Edward and I kept a low profile and Alex straightened my hair while I did my neb. Eventually it was time to go and we all set off to the church where there were quite a few people already there. I thought we were all going in and so went on ahead in to the church itself (which was very small and sweet and beautiful) One of Simon's family greeted Edward and I as we entered and grinning at Edward said 'ooo I do hope he causes a ruckuss!' I foolishly assured him Edward would be good and hopefully not cause too much noise, though admitted I was under instruction from Fleur to pinch him so he'd cry as she wanted a traditional crying baby!

From almost the moment we sat down Edward started to agitate, I fed him milk, I gave him food I gave him cuddles, I sang him songs, but none of it made any difference he just fussed and moaned and threatened to cry the whole time. My hat kept falling over my eyes and my hair was so long it kept getting it the way!! All in all a bit of a quiet nightmare was going on in our little corner as the ceremony went on thankfully blissfully unaware. I did manage to see most of the important bits and it was truly lovely, however I feel I am now truly a mummy as I have experienced the 'baby at wedding' scenario, for those of you not 'in the know' it mostly involves singing '10 Little Ducks' to your little bundle of joy whilst your child-hood friend swears the most important vow of her life!!! Kind of surreal, but somehow quite fitting :o)

After the ceremony we headed back to the farm and had some drinks and nibbles on the lawn and set up Edward's new cot/tent so he could have a nap, as he was clearly utterly over tired. Finally after lots of grizzling he fell asleep. I could have quite easily joined him, but instead made do with just watching all the people chatting and all the dogs (who were beautifully dressed up for the occasion) frolick around the croquet lawn!

After a while, and conveniently just as Edward woke up it was time for lunch, so we all headed down to the barn which was beautifully decorated. I must admit my photos of the wedding are a bit non-existent as I was stressing over Edward, however I did take this one, which in many ways I think actually sums it all up rather well...

The dinner was a very scrummy hog-roast the odd off-cuts of which got pilfered and enjoyed thoroughly by the many maurading pooches! I sat with Alex, Edward and Daddy up at the back and we got chatting to some of Fleur's friends from Thailand and America. It was really nice to meet them as Fleur has been away growing up with them all, all these years, it fitted a few pieces into the jigsaw of who she is now for me.

The blushing bride herself :o)

Edward got cuddled by lots of people and stolen by Aunty Shellie and fed Cheesecake, which I think may be slightly better than when he got stolen by Uncle Alex whom I snapped with a very suspicious looking beer bottle!

All in all a very lovely afternoon, though by the end of it I was shattered and so headed off to do my drugs and have a lay down, I also thought Edward needed a bit of peace as he was starting to get a little fractious again despite being clean and fed. Once back at the caravan Edward went to sleep for the night, and after sorting out his bottles for the morning I joined him.

The next morning we all had a nice family breakfast together chatting and laughing which was fun. The whole atmosphere was much more relaxed now the wedding was over and there wasn't a risk of us missing it! Alex helped Shellie and Simon clear up the barn though as I wasn't going to be much help I stayed at the caravan. We then all headed off in a cavalcade to a local pub for a lunch arranged by Fleur and Simon for people who'd come a particularly long way. It was a really tasty affair, Edward had some vegetables whilst sat in a big boy high-chair that we tied him to using Fleur's shawl!

After that we went off to get some petrol for the generator, and picked up a few bits that had been requested and for breakfast the next morning. We dropped them off at the house and then spent the rest of the afternoon together in the caravan chatting before getting an early night. Though looking at this photo of Edward it seems he had a rather more wild time than the rest of us...trail of clothes...empty milk bottle....discarded wine glass!!! Shocking !!!

The next morning we again had tasty breakfast, then packed everything up and got ready to head home. We popped up to the house to say our goodbyes, and so I could have a nose around Fleur and Simon's tiny cute little fairy-tale house, as I took a moment to peek out of the window however I was stabbed in the foot by a hideous wasp/hornet who stung me so badly he actually drew blood!! Up to that point I'd been feeling so smug about not having been stung, especially as Shellie had been stung on the bottom three times, and Fleur's Simon had, had to go to A&E having swallowed a wasp...clearly I was not meant to leave there without one though!

The drive home was uneventful but painful due to my injury. Once home I had a nap with Edward, Daddy watched the Grand Prix, Alex went to work and poor old Mummy scrubbed out the caravan. Once Alex came home he took me to get a burger as I had terrible cravings for one, then we watched Scrapheap Drag Racing before all getting a reasonably early night.

This morning I got woken up early again by his Lordship whom I dutifully cleaned and fed, I then packed up our stuff as I wasn't sure if we were going in early with Daddy to the office. Actually in the end he went in with Alex and so I got a chance to have a bit of a lay down before Mummy and I had to go into Bedford.

I went to my solicitors and got the final bits of my divorce papers settled.... about two years after having actually got divorced! Then we picked up Daddy and got the train to London. We parted ways at St. Pancras as they were off to Battersea to see an orphaned Black Russian called Carmen. I headed home and fell into bed and have barely been out of it since....all in all a long weekend full of oak trees, sunshine and family :o)

Shopping and Pie

2008-07-30T22:31:00.006+01:00

It's been a rather busy couple of days here at the ranch.

Yesterday I went off in search of flexible ice-cube trays for putting puree in as it is not proving practical using pots as I don't have enough of them nor a big enough freezer to be able to do the kind of variety I want. I also decided that I wanted to get some individual pie bowls as I thought my steak and ale pie would work better if it was made in a bowl rather than being just meat on a plate with a piece of pastry placed on-top.

I headed out to Oxford St. and left Edward behind as it's easier without him. I went in a few shops comparing prices and availability before getting the ice cube trays from House of Frasier and then a rolling pin, potato masher and pie-bowls from John Lewis where I was helped by a rather crazy shop assistant who spent about fifteen minutes telling me all about her Swarovski Crystal animal collection... quite how she managed to get from 'Where are the ice-cube trays?' to that remains beyond me!

I then headed home via la supermarche where I got the ingredients though I had to phone Luke and get him to come and carry it home as it was too heavy as I bought lots of heavy vegetables!

When I got in I started the cooking as Steak and Ale pie has to cook for hours in order to be any good, it was quite exciting as this time not only did I have my fantastic new bowls but I was also using a new type of ale, specifically BADGER Ale!!!

Anyone who knows me knows I have something of a mild on-running love of badgers, I think it began with my Sylvania's and was cemented during the days I played a character called Gem who owned a war badger rather fittingly called Baddie who in one particular fight managed to kill a guard single handedly by biting him in the nuts!

Not long into the cooking Aaron arrived, followed a while later by Chris and Andy. It was lovely to see them as they haven't been over since our last pie night, personally I would have cooked something different but I was overwhelmed with demands for pie that I could not refuse.

We had actually been trying to arrange this dinner for a while but given a variety of factors we kept having to cancel until it got to the point that Andy was having 'Homer in the land of Chocolate' style dreams of pie, and Chris was becoming concerned that Andy may actually mistake him for a piece of ale dripped steak and eat him in the night!

We all sat down to eat (minus Aaron who had to go and pick up some stuff) and we ate lots and it was tasty and we had fairy cakes for puddings for which Luke made some very questionable looking icing that not too surprisingly only he and I ate. The boys all then played Call of Duty 4 together (which they had been doing before dinner too) until it was time for Chris and Andy to go home to bed as it was a school night. All in all very good fun!!

The rest of the evening wasn't so great as Edward was unwell and crying, we had to have him in the bed with us in the end and it took him a long time to settle and he woke frequently in the night. However come the morning he'd cheered up and was clearly feeling better and so I took him out with me, I also wanted to give Luke a chance to sleep as he did most of the night-care.

Today I had lots to do that involved running around town quite a bit. Firstly I had to go to the Library which is over by Paddington, I then had get my Freedom Pass done which also involved getting passport photos though thankfully there was a machine there though it cost £4.20!!

After that Edfart and I headed to Camden as I wanted to get a video I have, of a very old version of 'The Lion the Witch and The Wardrobe' that Fleur, Shellie and I used to watch as kids transferred to DVD as a wedding present for Fleur, however sadly in the month or so since I was last there the shop has closed ARGH!!! Serves me right for not being more organised and getting it done sooner, though thankfully later Luke managed to find it on Amazon hurrah!

I then headed to Oxford St. as I realised that I didn't really have a bag that I could use this weekend that is a) big enough and b) able to sling over Edward's buggy. So lots of mooching and shopping and a spot of lunch later I came home with a FANTASTIC huge zebra bag, lots of clothes for Luke some new bedding (as I'm bored of what we have) some shoes to go with my dress for the wedding and a belt...hurrah for Primark :o)

This evening has been pretty laid back, I spent a few hours making a card for Fleur as I decided it would be gorgeous to do a tree with paper leaves all individually sewn on, it is pretty, but not something that could ever go into mass production I don't think haha!

Edward started feeling unwell again late in the evening and we had some more tears and lots of snot, so I've given him lots of cuddles and milk and hope that tonight he makes it through the night in his own bed and that he feels a lot better tomorrow.

Obviously things will be quiet the next few days, but I shall return with pictures of the wedding and lots of lovely stories I'm sure :o)

Annual Review

2008-07-28T23:45:00.003+01:00

I had the final part of my annual review today, I started it back in April but was too unwell to do a number of the tests and so it got postponed until today when they could book me a space.

I'd already had a bone scan which showed low bone density, the chap at the time said it may be of a concern when I reach the menopause...I told him if I reach the menopause I'm going to have ALOT more to worry about than brittle bones haha!!

I had to get there early and did my physio shuttle test where I managed to walk 140 meters not too bad and I only de-saturated to 90%. I then had x-ray and bloods neither of which yielded anything worrying, and in-fact later in the day I looked at one of my x-rays from 2006 and minus the port-a-cath it was pretty similar which was nice to see.

My lung function, which lets face it is what I actually care about the most is low but stable. Dr Bilton and I had a long chat about it and we suspect I have some sort of mould or fungus creeping about the bases of my lungs. She's going to look at my bloods and then make a decision about whether or not to try some anti mould/fungus drugs, though she did say that regardless of my bloods she may give them a try anyway in the hope of pulling my lung function back to about 40% and hopefully getting me off steroids.

The are also going to refer me to the E.N.T guys as I'm marginally worried about my hearing. It is well documented that sustained high doses of aminoglycoside's have a nasty habit of wrecking your hearing, hopefully in the long term things won't get too bad, but I'm relatively certain that the finer edges of my hearing are slowly being lost :o(

It is something I've seen before in another CF patient called Alex Stobbs who is an utter musical genuis, for him to loose his hearing almost seems almost the worst and most painful thing CF could possibly inflict on him, so by comparison me having to turn the TV up a bit louder seem rather trivial.

We talked briefly about transplant but both agreed I'm not quite at that level yet, however we also agree it is something we need to keep a close eye and open dialouge on. I don't want one too soon as the risks involved in the surgery and recovery aren't worth it, equally however I don't want it left so late that I become to ill to survive it at all. To me overall it is, and always has been, a forgone conclusion that at some point I will have a transplant, I just hope that by the time I need one the fantastic work of the Live Live Give Life team, whom I adore with all my heart, will have started to pay off and organs will be nice and easy to get hold of, if not little Edward-Tedward* may be in for the chop!!

If you haven't already go sign the register now online and MAKE SURE YOU TELL YOU FAMILY!!!

*Obviously I'm joking about Edward...I do hope that goes without saying!

Greatham Family Picnic!

2008-07-27T23:15:00.005+01:00

Thursday afternoon I made two different types of Thai marinade one I'd used before and one I found as a video recipe on a fantastic site called video-jug.

Friday morning before going out with Fleur and Shellie shopping I made some cakes ready for the picnic, I made cherry and coconut cakes and plain fairy cakes, I had wanted to make them butterfly cakes but I realized it wasn't practical to transport them that way. Friday afternoon I made Mexican Pastillos which are a sort of biscuit served at traditional Mexican weddings, we weren't really celebrating a wedding of any kind but it's a recipe I've wanted to try out for ages and so this was a good opportunity, they were quite nice but not what I'd been hoping for.

Late Friday after the worst of the pollen had settled we headed down to Greatham and arrived to find everyone sat out on the benches chatting and eating, we of course sat down and joined in. It was particulalrly lovely to spend time staring at the stars spotting shooters and lost satellites, i do miss that under the orange glow of London Town.

Saturday we got woken early by Fred trampling about the house excitedly however managed to get back to sleep and have a pretty good lie in as Edward was tired out from all his adventures the day before. I then went downstairs to find it full of people preparing food and so got going on my marinades, which didn't take too long as it mostly just involved smothering the meat in them and shoving it in the oven for a guess period of cooking time!

Luke had taken Edward out into the garden on his playmat, I went and sat out with him for a little while and Luke helped manhandle things like benches down to the picnic area. I then had to go and do my nebs and physio. By the time I'd finished that it was about kicking off time for the picnic hurrah!!

Food glorious food!!

Everyone had made really tasty things, someone in particular had made an exceptionally nice rice which I ate lots of, even little Edward joined in and had some pitta bread and tennis balls!

This was the first time Edward had met most of the family and it was really lovely how many people came over to admire him and congratulate us, I don't know if Luke really took it in as he is paranoid they all look down on him, but they all seemed sincere to me and genuinely pleased to welcome a new little member into the family. Edward of course lapped up the attention especially when it came from Harriet who is his favourite girlfriend!

There was a tennis tournament organised by Camilla which lots of people took part in including Fred and Luke, neither of them did well but they both had fun, though afterwards Luke felt utterly awful and had to go and lay down for most of the rest of the afternoon. The combination of the overdose of hayfever meds, tennis and heat got the better of him :o(

The picnic went on all afternoon though Edward and I had a bit of a nap up at the house half way through as it was all a bit much!

That evening was again lovely and chilled out, and I got to do lots of tidying in the kitchen which made me feel better as I'd felt guilty for skipping off earlier after having just done my bit, not that I could have done much if I'd stayed as there were so many people milling about.

Sunday morning Edward and I spent some time down at the pool with Thea, Harriet and Shambala though not too long as Luke decided it was best to head home as he was still feeling really bad and it was rubbish sitting inside sleeping while everyone else was outside. Although I would have liked to sunbathe a bit more I didn't mind too much as I know the instinct to 'crawl home when feeling crap' all too well.

It was a gorgeous sun-soaked weekend and I can't wait for our long stay later in the summer, I just hope it's as sunny so that Thea and I can catch some rays with the little sun-worshiping baby of gorgeousness :o)

Fleur-Bert!

2008-07-25T23:04:00.000+01:00

A very old and very dear friend of mine Fleur came to visit with my sister Shellie and her boyfriend Simon. Fleur was a girl we have known since we were little and we grew up like sisters spending weeks at a time at each others houses only to finally be taken home and ending up staying at the other persons house! Sadly she moved away to Thailand and so we mostly lost touch with her as that was the dark days before the interweb and the glories of facebook.

However she has finally come home to England and is actually getting married next Friday, an event to which we are invited hurrah! She was up in London sorting out the last few bits for said wedding and arranging details with Shellie who is going to be her maid of honour ( I think!)

They arrived Thursday and we sat chatting and I showed off Edward to a very delighted Fleur, then we went out to dinner leaving Luke in the safety of the pollen free house helpfully babysitting. Fittingly enough we went to the Thai place at the end of my street and it was nice as Fleur could talk to the staff in Thai, though the waiter did a real double take when she first started speaking to him. She was quite amused by the coconut rice as in Thailand it's only really eaten as a pudding with mango, something I already knew, but I don't care it's so tasty I could eat bowls of it just on it's own :o)

The next day we all went shopping on Oxford street as Fleur wanted to get some stockings to complete her bridal outfit aswell as a dress for the next day. We had fun in Ann Summers, especially Edward who ate his breakfast there whilst giving his best flirty eyes to the manikins that he thought were real ladies...bless!

We spent hours in Monsoon and found a perfect dress for Fleur in Laura Ashley though had to get a nicer ribbon for it in John Lewis. Shellie then had to go as she had patients, but Fleur and I stayed on and had lunch in the cafe at the top of John Lewis as it has a nice view, and also rather fantastically gives out free baby food!

It was a really good fun girly day though a bit of a mad rush at the end as tragically there had been an accident on Oxford Street and it was closed and so we couldn't get a bus and had to dash all the way home and then to Paddington to put Fleur on the train home.

Spring...well Summer Clean!

2008-07-23T21:13:00.006+01:00

The house has been a bit of a mess recently and in need of a good clean. It's quite hard to do as it's physically demanding and so time consuming, so it's taken me a while to get around to doing it.

Last week I cleaned the bathroom and oven, today I tidied most of the house including tackling the piles of boxes in Edward's room, really there is a limit to how much I can do without selling stuff on E-bay which is my plan, but that is going to be a long day of sorting clothes into lots and writing the descriptions, not to mention taking the photos, working out postage and finally uploading them all onto said auction site!

Luke did his bit and did the hoovering which I find too difficult, he also did the windows in the lounge and our bedroom. It is unbelievable how different and how lovely it looks in comparison, the whole room now feels so much lighter and more airy which is a major bonus when the temperature and humidity is so high.

Edward had a good day watching us he is getting to the point now that he is able to sit in his Winne The Pooh ring, though he needs more practice. He was particularly helpful when it came to the washing and he helped me sort it out and hang it all up :o)

A Lovely Family Day

2008-07-22T19:14:00.008+01:00

Well as the title suggests today has been a really lovely family day, it started out with us all having cuddles in the bed this morning which we haven't done much since we moved, that was really fun and lovely though sadly I missed getting a photo of Luke and Edward playing as they looked SO cute together.

After yummy lunch of chicken pie and rice pudding for Edward, and bacon sandwiches and mushrooms for the parents we decided to be brave and risk going to the park, somewhere we tend to avoid due to Luke's horrid evil hay-fever. I think we were out for about half an hour, we mooched down to the Serpentine and had ice-creams than mooched back via the post-box so I could post my letter for 'my' Postpal. Luke was very itchy and it wasn't entirely pleasant for him but I was really grateful that he made such an effort for us all and even he agreed that a short walk like that was bearable. It makes me so sad it has to be like that and that it can't just be a totally enjoyable experience but it is better than nothing and I'm very grateful to him :o)

I then had to go to the dentist, she took some x-rays and wanted to do a filling. I'm terrible when it comes to brushing my teeth, I don't know why but I really really hate it with a passion and always have, so it is no surprise I need work done, I'm trying to be sensible and take advantage of my maternity certificate before it runs out so I can get it done free! However I was really frightened I tried to stay calm and do deep breaths but I was still panicky. In the end she decided it was best to refer me to have it done under sedation at the hospital, she said if I was a normal patient she would have carried on but due to my steroids she was worried that I may go into some sort of hypoglycemic shock, I felt so guilty and pathetic and like I'd wasted her time but she was very nice about it. I also think she was worried about me passing out and not knowing how to deal with me and the forms she'd have to fill in if she had to call an ambulance and so decided to er on the side of caution, as it means I get out of having it done for a while longer I'm not complaining!

Edward has been a pretty good boy overall today, much more settled than yesterday, though he has got into the habit of making a very annoying moaning noise, he has also taken to doing fake coughs which are really quite funny especially as he often smiles and looks terribly pleased with himself after he's done one...obviously been watching me at physio time a little too closely :o)

You can just make out Edward's little butterfly that his friend Abi sent him in this one!

Postpals

2008-07-21T11:58:00.004+01:00

I've had a rather flat week, after coming home from Bertie sitting I felt pretty rough for most of the week and the weather wasn't that great either so I didn't feel very inspired to go out and do anything. I was kind of annoyed with myself about that as before my admission I'd done so well at finding activities to go and do as well as making friends with my various mummy-chummys.

I think part of the problem was me worrying about university, I had spoken to my tutor about it and she had given me the time-table. After my initial cockiness that I would be fine to go back full time I suddenly came to the rather crushing realization there is just no way I am capable of that. Also seeing the amount of hours Edward would have to spend at nursery written down in black and white made me accept finally that it is not what I want for him. Though I don't want my life to go on hold and get stuck as a stay-at-home-mum I also don't want Edward in nursery from 8.30-6.30 at least three days a week it's just not fair on him. If he was a bit more mobile and capable of occupying himself I wouldn't mind, but at the moment he is just a bit too vulnerable, though I know it works for some people and I'm sure the nursery will take good care of him, that is just a bit too much.

All that said it still really got me down as it made me feel pretty feeble and the prospect of my degree going on for another four years is not one I relish. However rather than moping about I was proactive and booked a meeting with a student adviser. What we hadn't previously realized is that Luke is still entitled to a full student loan and childcare allowance for this year, we thought because he was re-sitting modules from his 2nd year he'd get nothing. It has totally changed the situation as it now means we can afford for me to go part time. We are going to use Luke's loan to pay for my fees and his childcare will cover Edward for the few hours that both of us are at university which hopefully won't be too many in a week. That really cheered me up, but I'm still quite panicky about whether I'm going to cope or not, a worry that has been amplified by the fact I've had to have naps during the day most days in the last week, I'm sure once I'm there I will be fine especially now we've found a way for me to go part time.

Despite that good news today has been a really quite rubbish day, I've been asleep almost as much as Edward and when I have been awake I've been really bored but not really had enough energy to do much about it except trawl through BBC i-player which is my new favorite toy!

Then in the evening I was doing my usual peek through the blogs I follow regularly and on little William's blog his mum mentioned that he had been given a Chemo duck by a charity called Postpals as well as attending a party arranged by them. The duck has undergone various surgeries so that he has the same sorts of tubes and implants as William which I think is a fantastic idea.

Postpals main aim though is to get people to write letters and send little presents to children who are stuck in hospital a lot and having to put up with tons of treatments and generally feeling rubbish, and in a really fantastic move the charity have also set out to support the siblings of the poorly children to make sure they get some attention too which I think is ever so important as far too often they get forgotten about when in some ways it is almost probably harder for them having to watch their brother or sister being ill all the time and having to deal with the worry and lack of attention, I don't think it should ever be underestimated how hard this can be.

I also know how isolating being unwell can be, it's hard to get out and do things and see people, and often you don't really even feel like seeing people as it takes too much energy. I really understood how much these letters could mean to all these people stuck in smelly hospital as I know just how they feel and know how much it can really make your day, or even your week actually just to get one letter or one visit. My darling friend Raj is always excellent at visiting me in hospital and often brings me little things such as muffins or white peaches, and even though they are just little things the thought behind them always touches me so much and I really savour eating them because they are all the more special :o)

It took me a long time to pick who to write to as I could have happily written to all the people on there all their siblings and all their parents. However in the end I chose a girl called Laura as she reminded me that there is always someone in a worse situation than me and that I shouldn't mope about feeling sorry for myself! I wrote a long letter that kept me occupied for ages, I told her a little about Chinese Medicine Theory regarding the role of Kidneys in the body as I thought she may find it interesting I enjoyed thinking about it and even got out my old notes to make sure I got the details right. I hope she likes it and isn't just bored by my inane waffle she sounds like a really awesome young lady :o)

I really urge everyone to go to the Postpals site, choose a person and write a letter or send a card, it won't take much time or cost much money and could put a smile on a very brave little persons face so give it a go :o)

Most of this week Luke and I have sat down together and watched a few episodes of House last thing at night. It is really excellent even if the plot structure is a little predictable. It is actually part of the reason we named Edward what we did as we watched so much of it while I was pregnant and both thought it was so awesome. We liked the name Hugh, which led to us thinking Hugh Laurie, which led to Laurence which is Edward's middle name, it was also one of the names suggested by the highly fantastic Great Aunty Mellie.

The pregnancy and birth coupled with all the long admissions and me feeling tired and grumpy has put something of a strain on our relationship, not in a disastrous way, but enough that we need to put a little more work and effort in on each other, something that is too easy to miss out between all the Edward-fussing and physio. These late night evenings have done a lot to make us feel closer it's been really lovely.

We are planning to go to Salsa classes together, I've looked some up, they sound a bit intimidating but I just have to tell myself that half the people there will be just as rubbish as me, and that no one is going to be laughing at me more than I'm going to be laughing at myself. It looks good fun and pretty sexy and would be a really nice grown-up thing for Luke and I to do together, I also think it will be a good confidence booster which is a major bonus for Luke :o)

In other news Edward was seven months old today!!!!

Bertie-dogsitting and Grand Reunions

2008-07-14T20:15:00.000+01:00

This weekend most of the Crossland's went to Berlin as our gorgeous friend Diana was having a big party in a castle. We couldn't really afford to go and so I offered to dog-sit as poor little Bertie is very unwell at the moment and not able to go to kennels.

He has a mix of complex conditions I don't really understand and is on a lot of complex medications including one that has to be injected and one that you can't touch with bare skin. Thankfully all that CF training came in handy and with the help of Mummy's notes I managed to do a pretty good job of looking after him, he even skipped a little and wagged his tail. Stroking him was heartbreaking though as he is so painfully thin, you can feel every single bone, and he's quite unsteady so shakes terribly from the effort when he crouches to go to the loo. Mr Squish (the cat) however was most supportive and came on walks with us and snuggled against Bertie for cuddles, it was a shame I didn't quite manage to get a snap of it as it was really heartwarming.

The best thing about being 'home' however was that it gave me a rare opportunity to see a couple of my very best friends in all the world, namely Prince Adme of The Bog of Eternal Stench and Marquis Jarmies of Bogborough :o) We tried to work out when the three of us were all in a room together at the same time and came up with the horrid suspicion it had been at my wedding five years ago...shame on us.

Freakishly Adme was at the train station when I arrived and so gave me a lift home, then he came back later that afternoon and we went out for lunch/dinner with Jarmies at an all you can eat in MK which was fantastic as it offered a wide range of food. We had a few issues with a waitress who tried to take Jarmies' plate when he'd barely touched it, and then spent the rest of the evening trying to barge me to the floor as I went to and fro with my plate (we suspect we overheard us talking about her and enacted revenge upon poor little me as I looked like the easiest target!) All in all it was great and we didn't stop laughing except to shovel food haha!

That evening Adme came back to mine and we died his hair, it didn't quite come out the shade showed on the box, it was more reddish, however it looked really good and solved the problem of Adme's eyebrow's being too dark compared to his hair...quite a major problem I'm sure you'll agree. After that I did some cupping, moxa and acupuncture on him, it's been a while since I did such a full on treatment and I really enjoyed it.

I freaked out a little when I went to bed as I was in the house on my own and it hit me how out in the middle of nowhere I was as it was suddenly so dark and quiet.

Next morning I foolishly woke up at 6am panicked that it was time to do Bertie's meds and so ran downstairs, worried he had died in the night as he didn't stand up when I came out, but when I bent down to stroke him his little tail started wiggling...phew!

I worried I may not wake up again and so I gave him his meds a bit early then went back to bed, though typically I then couldn't get back to sleep, so instead I lazed about in bed reading FHM for a while. I then mooched downstairs and spent the day watching bad TV like Nanny 911 (which is criminally poorly editited so much that even I noticed the continuity errors!)

In the evening Adme came over again and we hung out, both of us were kind of tired and quiet but it was still really nice just to be in the same room and bitch about big-brother together :o) I dream-plotted to hire a large skip and throw out the entire contents of the house on the basis that there was nothing of high enough value to warrant the amount of stress and misery all the stuff causes my parents. There is just so much it's overwhelming and impossible to know where to start, I just wish I could afford to hire the woman I hired before to come back and give them more help as it seemed to have a good impact both practically and emotionally last time she visited them...though I have noticed that 'storing stuff in zip-lock bags' has become the new 'store stuff in boxes' ...bless them...one day it will be sorted and they are trying they just need to work as a team and be ruthless :o)

Monday I woke up a little later but still early. I did Bertie's bits and then spent the rest of the morning trying to do a bit of tidying for Mummy.

Late morning they all arrived home, they'd had a lovely time especially Daddy who'd been asked to DJ and had made such a good job of it that everyone asked him to do some more the next morning.

Daddy then gave me a lift to Bedford where I managed to get on a speedy train, they had hoped I'd stay and that they could take me out to dinner but I wanted to get home to Luke and Edward and due to my jammy train catching I was back in the smoke in about 30/40 minutes. I was very tired though and not feeling well so it was a really physical effort to get to the bus, and then from the bus-stop to the house. When I got in Luke had run me a bath which I got straight into, then I had a lay down on the bed with my oxygen till I felt a little better.

I then had to go to the dentist which I didn't fancy but thankfully it turned out to be a very quick consultation as she was just doing an assessment, I have to go back next week for the work :o(

When I got home Aaron was over, later Mr Vince arrived. I must admit I was a bit anti-social and laid in the bed on my O2 as I felt crap. After a while we started moving the lounge around, it took a lot of effort and experimenting but now it looks really good :o) Half way through Chitzi arrived which was fantastic as we haven't seen her for ages, she cuddled Edward, who, just like Luke and I formed an instant appreciation of her giant boobs!!

Hayfever Trials and the Listening Post

2008-07-10T23:37:00.010+01:00

So far this week has been a little apathetic, I have sorted lots of paperwork which is never ending it seems, however I haven't done much so it was nice to finally get up and go and do something.

Luke took part in a hayfever trial today, they took blood and did some skin-prick tests to assess what he is allergic to. Sadly he reacted to too many different allergens to be able to fully participate in the trial however the woman did give us the name of a doctor who she suggested we request a referral to, she said that Luke should be able to have immunotherapy, yes that would be the same immunotherapy the GP told us was outlawed due to excessive deaths!!

Though of course his hayfever is 'just hayfever' and not a totally life-inhibiting condition that means the poor man can rarely leave the house for more than an hour or so at the time or the condition that prevents him being able to take his son to the park. Fair enough a bit of a runny nose and itchy eyes is nothing, but Luke has severe and chronic hayfever, antihistamines don't work and he's not going to grow out of it, so it was a relief to finally see someone who understood and treated it like the serious condition it actually is.

As we were over that side of town, and the large quantity of rain in the past few days has dropped the pollen count to bearable we headed to the science museum which we have been planning to go to for months. It was fantastic fun to mooch around though of course Edward went to sleep literally the second we walked through the front door. Seriously that child I try to expand his mind and he just sleeps... it was like his first trip to the park all over again!!

By far the best thing we saw, in my opinion, and a big part of the reason I wanted to go, was to see an art instillation called 'The Listening Post' it wasn't entirely what I had expected and was actually better than I thought it was going to be.

I consider myself to be very much a child of the 21st century, the few weeks after we first moved and didn't have internet I felt genuinely lost and frustrated, it is such a massive part of my life, I have spent so much of my life enveloped in it. It keeps me in touch with my friends and my family, it has given me a platform and audience to write to, and provides such an utterly bottomless and magical wealth of information that for all it's dark corners and downsides I wouldn't be without it for a second.

It is a strange place, an adjunct to the real world, yet all of it somehow eventually down a long wire comes back to the real world, I truly believe the content of the internet to be one of the greatest single achievements of the human race. It is effectively a world created from the human mind, so often I find my body cannot do what my mind dreams of being capable of, in many ways the internet takes me to those places, when I'm too ill to travel to see my friends it takes me to them, it shows me pictures of all the countries I cannot fly to, it teaches me all the things I will not have time to learn, the internet is so utterly without boundaries, it is the eptiome of what we as a race are capable of, it is the eptiome of freedom.

Outside 'The Listening Post' was a quote from a review that called it a 'chapel to humanity' or something similar, I thought it was a very accurate statement. It is an honest, haunting and beautiful summary of what the modern world has become, proffered without judgment. Having walked through halls and halls of weapons it was a relief to see that beneath it all there is still hope, we are just us, just human, nothing more and certainly nothing less.

A/S/L?
23/F/LONDON U?

"Thank God For The Internet"

Just a few photos!

2008-07-07T21:30:00.007+01:00

I know this has all got a bit behind as I've been away, I will do a catch up post but will backdate it so make sure you don't miss it.

For now I just wanted to put these pictures up of Edward and Aunty Thea as they are just so gorgeous. She is such a perfect aunty she loves her little nephew so much, in a funny way it makes me feel really proud, both of Thea for being so wonderful, and Edward for being so adorable!

The final photo is from our trip out on Saturday. We had planned to go to Liberty's as Thea had read about it on my blog, however Gay Pride was on and we couldn't cross Regents Street to get to the shop. It didn't matter in the end though as walked down watching the parade which was quite moving in places, especially hearing the cheers for all the military staff who were allowed to wear their uniforms for the first time. Initially I didn't think it was appropriate for them to wear them, but then I decided that it was actually important for them to make their statement, this country is full of all sorts of types of people, and those men and women are as much a part of our society and the forces that defend us as anyone else and it is right that they take pride in what they do especially when you consider they lay their lives on the line for people who hate what they are.

After initially not wanting to walk as far as Regent Street we ended up walking all the way to the South Bank where we had a yummy lunch in Wagamma before having ice-creams. Thea then headed home and we rushed back to ours to make sure we were back in time for the end of Dr Who. Hurray Cathrine Tate is gone, and David Tennant is still alive....all faith is restored!

Hospital Admission

2008-07-04T18:31:00.001+01:00

Sadly my photo is a bit boring, I got distracted by the match, but it gives you and idea of what it was like!

Well it was a bit of a varied one this time, I wasn't hugely ill which made a really nice change, I said to the taxi driver who took me over that it made such a nice difference to be going in and knowing I wasn't going to be chained to the oxygen when I got there.

My blows on admission were really good, so good in fact I felt quite guilty for being there. The plan was just for a bog standard 10-14 days of IV's. For the first few days I was in one of the private rooms which was really nice and had a sofa, but I knew it wasn't destined to last so I didn't get too comfortable.

The admission was mixed in it's success, my lung function actually went down, and I didn't feel any better by the end of it, however I didn't feel any worse.

I was lucky enough to take part in a clinical trial investigating the effectiveness of muscular physio on correcting the curvature of my spine and generally mobilizing my rib-cage. It was very interesting to take part it as we chatted about all sorts of complementary therapy concepts while we worked. It made me feel a lot better and straighter and the difference in the measurements was shockingly good, all in all a major success. I just really hope that the trial is a success and the secure funding for regular treatments.

Unfortunately my whole system is always under such strain there is no quick-fix, I need constant maintenance, for years I've felt guilty about my posture, but the physio treating me was very supportive and encouraging. She said although obviously there were things I could do to help myself it is just the natural thing for my body to do, breathing comes before good posture in the body's order of priorities, and I have to say it's a wise subconscious decision .She also said it was partly cultural, partly from a sedate lifestyle, but also when we see other people stood in poor positions sadly we are liable to copy them, the body is kind of lazy like that!

Other things of note that happened...

I went home and cuddled my boys and watched Dr Who, which though not earth-shattering was a lovely thing to do. I really enjoyed the fact they were so close as I could nip home and see them and still participate in Edward's care, I got to feed him, bath him and put him to bed a few times. It is also much nicer to be snuggled on the sofa with Luke at home, than cramped on the bed with nurses and tea-ladies and goodness knows who else coming in my room staring at us.

Finally and most excitingly of all my dear friend Raj managed to get us tickets for center court at Wimbledon!!! I ran a bit late getting there thanks to pharmacy who had managed to send my drugs to the wrong ward, however it wasn't too bad and Raj had made himself useful helping out the wardens directing people towards Wimbledon.

We skipped down towards the courts under clear blue skies and on the hottest day of the year so far, by the time we got there the atmosphere was already buzzing, everyone was mincing about in lovely summer dresses, blazers and straw boaters (which Raj pretended to hate, but secretly I think he was jealous)

We mooched about looking at the courts, watching people warming up, and just generally soaking in the atmosphere, I think everyone was on a high from the gripping Murry match that had taken place the night before all secretly hoping they'd be lucky enough to be part of something equally gripping, and of course the streaming sunshine helped.

Eventually it was getting close to time for the match on center court to begin and so we furnished ourselves with Pims and water and took our seats. We each picked a random unpronounceable girl to back. It was a good match, though it went on for a long time, and sadly right at the end poor Raj came over quite faint and we had to go out so he could recover and so we missed the end!

I then did my IV in the medical room (well finished it off) and so missed most of the Serena Williams match, we came back just in time for the end. What I saw was impressive even from the gods where we were sat you could sense what an intense and powerful woman she is, I'd be quite intimidated if I ever had to face her I think.

It was quite surreal to actually be at center court having seen it for so many years on TV. I really missed having the little purple and green BBC graphics to tell me what was going on score wise and almost hallucinated them into place on several occasions. On the upside it was really interesting to see around the edges of the court and spend more time watching the inter-ball girl/boy politics, though in fairness they were terribly impressive and professional, one girl in particular was incredibly sharp, almost robotic in her movements....we think she has a promising career in the armed forces :o)

We then watched the mens doubles which was very different in style and pretty good, the match went on for a shorter length of time than the first womens match which made following it much easier and more interesting. To end we got to see some of the senior mens doubles, which was more of a comedy act than anything else as they took the mickey out of themselves for being so old, it was quite a nice end after the intensity of the earlier matches.

We didn't stay to the end though as we were a bit bored of being sat inside center court by then, so we went for a last wander round the site, had a mooch round the gift shop, and watched the very impressive junior womens doubles finish off their match. We then wandered down to the train station, we debated getting the bus but decided the £2.50 they wanted to charge was a total swizz, I regretted it a little half way up the very long steep hill, but felt smug once I got to the top.

It was a really magical day and something I'd highly recommend to anyone should they ever get the chance....tick 'thing to do before I die - go to Wimbledon' off my long list :o)

Thankyou Raj

Health Visitors....

2008-06-25T11:19:00.001+01:00

I just hate them!! They mean well and they try to help, but overall seem incapable of getting through a thirty minute conversation without saying something either incredibly stupid or incredibly patronizing, usually both at the same time!

Ironically despite my low opinion of their competence I always get very paranoid before they arrive that they may think I'm a terrible mother who isn't coping and that they will try and take my baby away. It's totally unfounded and unlikely to happen but I just can't help worrying so had to spend the morning tidying up and worrying, and secretly being annoyed at Luke for totally unjustified reasons....well apart from that he didn't put the cushion cover back on like I asked him to!!! ( I know the depths of his crimes are quite shocking!!)

The health visitor was actually very sweet, though they almost always are annoyingly, she was very careful to ask lots of questions about how I was coping and checking that I had access to activities and support so that Edward had things to do and so that I wasn't isolated. She gave me some details of a children's center we could go to and suggested that if I felt I needed it I could have someone come round to help out and offer more advice and support on a regular basis. While I'm well I don't feel I need much help as we get along fine, but it's nice to know it's there as from past experience I know how fast it gets hard the second I am unwell. She also suggested a father and baby group she knew of and is going to send me the details, I REALLY can't see Luke going to anything like that as he finds people rather boring however it's good that it's on offer.

We had a bit of chat about the weaning, she wasn't very impressed that I was giving him finger foods as she thought he may choke, obviously you have to be careful but I honestly don't think enough actually goes in for this to be much of a hazard. Overall she seemed to think I should be feeding him more and cutting back his milk, I'm a bit dubious about this as I don't want him to loose weight, and I'd rather take things slowly as we are only about a week in and he's not eating enough variety to cut back, and isn't taking any diary or protein yet, just veggies and fruit. I'm going to continue to stick to the guidelines in the book I got from the library as it seems by far the most sensible thing I've read on the subject.

She then asked to see his red book (this is a thing given to him by the health services to keep records of all his visits to doctors and all his jabs etc.) I laid him on the sofa at the back towards the groove and walked the whole meter across the room to where his book was, only to be told off and that he could roll to his death!! Again obviously you can't leave him laying around especially now he's rolling, but seriously there's no need to get silly and paranoid I'm not going to put my baby in danger for goodness sake...she seemed to think otherwise however and gave me a very informative leaflet about all the terrible dangers in the home such as ovens, glass and plugs...all capable of permanently maiming or killing my child...so all in all a typical health visitor visit.

I spent the rest of the day faffing about, though did finally manage to get the breast pump I hired sent back. I then started feeling really sick and tired, and so went to bed for a nap. It wasn't a particularly good nap as someone was doing some building works or something, upstairs were thumping about and then some woman started having an argument at the top of her voice in the courtyard. Then Luke came in and asked if we were going to the supermarket, I said he could if he wanted and if he did could he get garlic and onions...not long after that I gave up on my nap, and came out to find Luke changing Edward and cursing the reusable nappies bitterly hehe!

I then fed Edward and then cooked our dinner which was really hard to do as I was still feeling really queasy, however it turned out to be well worth it as it was very tasty. Luke thought it was the best pasta bake I've done so far, which though nice of him to say, kind of annoyed me because this was the first time I've used a jar and not just made it up myself. I think next time I try to cook one from scratch I may try using mascarpone as that was in the jar and gave it a nice creamy texture.

Edward and I had a lovely time playing this evening, he was practicing his sitting up and rolling THE CUBE around. I've also been teaching him all week to blow raspberry's and he's coming very close, last night he kept poking out his tongue, I must get a photo of him doing it because his little tongue is so small it's so sweet :o)

I've started making another sling out of the left over fabric, I have all the pieces chopped up and am going to sow it while I'm in hospital. I figured I can hand sow it, give it a try and if it doesn't feel strong enough go over it with a machine next time we visit Greatham.

I really enjoyed giving Edward his last feed of the day, though it did make me quite sad knowing there are so few left to go before I go in and can't do it any more for a while.

Luke and I then went to bed and cuddled and talked for ages, it's always so hard being separated, neither of us really wanted to go to sleep as we both knew it was our last night together for a while. Much as I hate it though, I think it does make us both appreciate each other more and we keep that magic of the simple joy of going to sleep and waking up in each others arms.

Mummy Chummys and Sling making

2008-06-24T23:34:00.005+01:00

I was a little late leaving the house this morning and then managed to get on the wrong bus. I had planned to go to Hyde Park corner and then walk down to Green Park where I was supposed to be meeting my new mummy-chummy Louise. Instead however I ended up getting on a bus to Oxford St. there was a bus from there to Green Park but it didn't look like it was going to arrive soon, and I was already running late and so walked down. It was quite a long way, and some of it was uphill, but I made it there and never saw the bus go past so clearly made the right choice.... go little lungs go!!

We then had a leisurely wander through the park chatting about lots of different baby things, such as births, weaning, dummy's etc. it may not sound very exciting, but I still find it very enjoyable to talk about it with other mummy's and find out what their opinions are. It was really nice as though I think Louise are in some ways quite different people (she's much more sociable and into going out than me) our attitudes to our babies are really similar.

Neither of us are sticklers for routines or any kind of evangelical extremes, though we know when to put our foot down (for example controlled crying) mostly we appreciate that babies are babies and that just going with the flow seems to be the happiest approach for all.

We had a nice tasty lunch, all the waiters and waitress' at the restaurant kept coming out to make a fuss of our babies, though I love the attention and it's nice to have people excited to see Edward and tell me how beautiful he is, I always feel a little bit shy about it and never know quite what to say. Little Amelie loved the attention and was smiling and chatting away. It was so amazing to me to hear her little voice, though she made similar noises to Edward her voice was SO different, I'd never really thought of Edward sounding like a little boy before, but having heard her there is clearly a difference.

After lunch we wandered back up to Trafalgar Square so Louise could get her train home. I was going to get the bus home, but decided while I was out I could go and find some fabric for making a sling for Edward. I went to Liberty, I've never been there before, and I couldn't actually afford anything they sold, but it is the most beautiful shop full of stunning fabrics, clothes, jewelery everything really. There was so much creative talent crammed into their products I left feeling really inspired. If I ever had the money to do a proper interior design project in my home I would defiantly go there. I also plan to take Thea as it is just the kind of gorgeous arty place she would love.

A woman in the haberdashery department gave me directions to some shops nearby that she thought may sell what I was looking for (Liberty is too posh for fleece!) I got a little lost, but I'd actually looked at this part of town on the map before I came out and so had a rough idea of where I was headed and without too much drama found my way to Berwick St. I looked in one store that had a fantastic array of colourful and interesting fabrics, however sadly no fleece. They suggested a different store, that did have some fleece, however having had a chat with the assistant I ended up getting a sort of thick cotton/jersey type fabric in a shockingly tasteful grey/blue which we both agreed would probably be more appropriate.

Thoroughly exhausted I headed home. I fed Edward his dinner (see his blog for piccies). I then made the sling which I'm quite pleased with, however I feel it's a bit big for Edward at the moment and he can't really see out of it that well, unless he dangles out the side of it like a cheeky monkey! I then ate very tasty Korma made by the very tasty Luke :o)

Sleeping, Barbecues and Budgets

2008-06-23T19:02:00.006+01:00

A blurry Edward keeping a VERY tight hold on the sweeties!

Saturday was a very quiet day, none of us ever really got going, we just laid about cuddling and sleeping all day...it was gorgeous. We watched 'The Hulk' and I really made Luke giggle because I held Edward's arms up in a sort of body-builder pose and went 'grr' !!

Sunday we were a bit rubbish at getting-going again today, I think a bit of a hang-over from yesterday. We were supposed to be going to Vince's barbeque down in Worthing, however missed the 12 o'clock train, then left to get the 1 o'clock train with what we thought would be plenty of time to spare, however the buses conspired against us and despite trying to get a taxi to Victoria managed to miss that train too! Both now starving we each got a drink and a sandwich and sat and ate those, we then got some sweeties and hula-hoops for the long train journey.

We finally got to Worthing and Mr Vince picked us up from the train station. It was VERY weird to see him driving as though I knew he could I've only ever been with him in London and he never brings his car up here. Lots of his chums were over, and of course the ever gorgeous Lady Karolina. The girlies were very excited to see Edward and all thought he was gorgeous and very big for a six-month old...I think there perception may be rather Chinese based as he's kind of small because of being so premature....however I of course loved showing him off to new people as he is just so gorgeous :o) My cool sexy boys!

We all sat around eating and chilling....as it was very chilly in the wind hehe....and admiring Vince's fantastically well constructed barbecue, it was very enjoyable to be out of the city for a bit with friends in the sunshine. After a bit though we had to head home as we were both falling asleep and didn't want to get back too late.

Luke and I had lots of lovely cuddles that evening and watched a documentary following the story of The Kinky Boot Factory together while I did my physio and waited to be able to give Edward his last feed of the day. I've seen the documentary before and it's very moving, and reminds me of my own parents and their struggles and triumphs with their business. In the TV guide it implied that this was a follow up documentary and so we watched it all the way through hoping to see that the company had gone on to great success in the years since the program was first made. Sadly the TV guide lied... however a bit of googling later and we found that the company are very much alive and well hurrah for eccentric British business!!

Monday I had ambitious plans to go and buy fleece today as I found a pattern for a no-sowing Mei-Tei baby carrier which I plan to make. I would quite like to get a sowing machine so I can make a more advanced carrier, but even on ebay they are just too expensive to justify.

The hospital bed manager (who sounds terribly camp on the phone and makes me smile whenever he calls) called and said that he's going to do his best to get me admitted on Thursday. We had a bit of a joke over how it was SUCH a shame I had multi-resistant bugs as it means I have to have my own room, it's hard I know, and of course I'm much rather be in the bay with all the loud snoring sleep-apnoea patients with their constantly bleeping machines but my pseudomonas and I are just not that sociable haha!! Part of me is looking forward to going in, it's kind of nice to have the time and space to really focus on my lungs, and to have other people do all the hard work and motivation for me, however part of me is worrying about Luke and Edward and how they will possibly cope without me.

I then got distracted into doing the washing, and then going over the budget which is something I've been putting off for days. We have spent FAR too much this month, though most of it has been on bills and relatively essential 'new house' stuff too much of it has been frivolous. To help get our spending under control we are planning to print our budget out and stick in on the fridge as it's too easy to forget about it when it's tucked away in an Excel file. I've also bought a little book to write down everything I spend, this has two advantages 1) I will feel guilty if I have to write in it and so will think more carefully before spending the money in the first place 2) we will be able to see where the money is going, especially from those hole-in-the-wall withdrawals. While I was still feeling good and poor I went to the supermarket and managed to pick up a chicken for just £2 so tasty roast for us all.

Edward has really got into rolling now, however can still only do it one way and so keeps getting stuck on his tummy crying to be rescued and making himself sick!! Poor little monkey! He is also developing quite a hankie fetish, he loves covering his face with them and flapping them around, it's very funny to watch :o)

Luke and Karolina are playing WOW tonight with their cows, and I am watching them and laughing as Karolina keeps getting terribly annoyed and it's very cute!!

Edward shamelessly flirting with Karolina...watch out Vince!

Totally Retro Steak & Ale Pie

2008-06-20T23:40:00.005+01:00

Well it's been another fantabulous day in my sparkly little world.

The morning was relatively chilled, I had LOVELY long cuddles with Luke as Edward was having a lie-in. I then pottered round the house and replied to a few e-mails.

Around one-ish I headed off to clinic where the news was ok. FEV1 was 1.23 or 38%, which was down a tincy bit, FVC was 2.20 or 59% which was up a bit, O2 sats were 95%. Overall I'm steady but I think things are on the brink of a down-turn as the sputum is looking thicker and greener and tasting pretty nasty. I want IV's so I can have a new port-a-cath fitted and still have plenty of time to recover before uni starts in September. It is also not really practical for Luke to find a placement when he knows he's going to have to take two weeks off in the near future to look after Edward, so it's best to wait till it's out of the way. I got put on some orals until they can get me a bed, and then they are going to try and sort out a theater slot to time up with the end of my IV's so I will be nice and well.

When I got home I changed and fed Edward, and then got on with cooking dinner :o) Steak and ale pie tastes better the longer you cook it. Edward came and sat in his bumbo and helped (i.e. chewed his wooden cooking spoon) while I chopped up the meat, I then sent him back into the lounge when I did the onions as I didn't want them to sting his eyes.

I then attempted to make potato cakes again (mainly as an excuse to use my new griddle pan) it was a very messy process that seemed to cover everything, including Luke who only popped his head round the door, in grated potato!

After a while Andy and Chris arrived, I commandeered a wine bottle as an impromptu rolling pin, cooked the veggies and the potato cakes and then dished up. Edward sat at the table so he could watch everyone eating, and I gave him some broccoli to play with. The potato cakes weren't that nice, Chris didn't like them at all, but Andy did, I think overall they still need work, next time I'm going to cook the potato then mash it and then try and fry it. All in all, aside from the dodgy experimental porme de terres dinner was very tasty :o) Everyone appreciated their pastry boobies (Chris had three) however a few nipples fell off along the way!

After dinner, having eaten Atari (as well as boobie) pastry, we decided to get the Mega-Drive out, yes you did read that right and no it's not 1990, we are just SO cool we've gone retro! Luke and Chris had lots of fun playing Golden Axe and then Streets Of Rage, however failed to get anywhere as they spent more time killing each other than the gribblies. While they did that I fed Edward some apple puree, and Andy fixed my wireless after struggling to find any guidance on my laptop, seriously even the company that made it are so embarrassed by it's crapness they don't support it on their site!

We then put in Micro Machines and the extra controllers and all played that, Luke owned everyone with his character who was rather shockingly called Ganja, however sadly just as things were getting intense and I was finally managing to stay on the screen for more than half a second the console crashed and we couldn't resurrect it...boo :o(

Chris's guide to girl hunting ....Find girl....take girl home and show her room of geekyness...if she stays booyah MOTHERLOAD!
(note Edward sleeping in the corner hehe SO cute!)

Mummy-Chummys!!

2008-06-20T00:55:00.003+01:00

It was a lovely sunny day thankfully, perfect for our mummy-chummy meet in the park. I spent a bit long faffing and trying to make myself look presentable so left a bit later than I'd planned, as I didn't want to feel rushed and panicky I got a taxi over to the park, a bit of an extravagance considering I'm supposed to be being poor, but it was a special treat!

I walked up to the cafe and there were a couple of ladies sat there with buggies looking suspiciously like they were waiting for people. So I walked up and asked if they knew Charlotte (the lady that had arranged things) and one of them said yes that was her. Hurrah!!

It was a really pleasant afternoon, I think we were all sat chatting for about three hours! We talked about lots of things, all baby related pretty much, we talked about the hospitals where we had our babies, the joys of sterilizing all trying to work out at what point we can get away with not bothering any more haha, and the eternal evils of negotiating public transport.

Although obviously none of it was particularly earth shattering, it was really nice to just chat about these sorts of things with other people who are going through it at pretty much the same time as me, as just by chance all our children are around the same age, just a couple of months apart at most. Although I have some online mummy-chummies and both my mum and Luke's mum have been great it's not really the same, it was really nice to meet other mums, and their babies.

Edward thought it was quite fun too, I think. He had a good look at the other babies, it was quite amusing when I sat him opposite the only little girl that came as she started giggling, he just stared at her looking mildly surprised, while all of us mummies laughed at the pair of them!

After the group broke up I walked back a little way with Charlotte towards her house, and then as it was so sunny and nice I walked the rest of the way home.

Across the rest of the afternoon and evening a few e-mails have been sent out by the girls who came and it seems like everyone had a really good time and the plan is to all get together and do something together again soon.

When I got in Mr Vince was here playing puters with Luke. I changed and fed Edward and had some food, then went for a nap, stupidly I thought it would be nice to take Edward with me and snuggle, however he just wriggled and wittered and was generally a monkey so in the end I rolled over to get away from his kicky legs!!

When I woke up I warmed up the spicy chicken bake for Vince and I which we both ate. I was still hungry after though and so Luke and I were naughty and ordered BAD fried food hehe yummy yummy mozzarella sticks..... lots and lots of creon for me :o)

Tootly tootly

2008-06-18T23:34:00.010+01:00

Monday I took Edward to the baby clinic where he weighed in at a hefty 7.32kg. I was impressed with the clinic overall as it was much more professional than the one we used to go to in Caterham. I then went up to the gym to register and then the library for the same purpose, whilst there Edward spotted a gorgeous puree book which we got out. That evening I had planned to go and see the very sexy Freedom High, however sadly I was so shattered I didn't feel like I would enjoy it if I went, also Luke was raiding and so wanted me to keep Edward out of mischief. I felt a bit guilty as the band are friends of mine and I haven't seen them in so long, however I'm sure I will make it along next time.

Edward posing with one of his old vests' before we packed it up for Oliver....this used to be BAGGY on him!!!

Tuesday Luke and I had the understandable whim that we wanted bacon sandwiches, however sadly did not possess a frying pan, so together we braved the outside polleny world and headed out to Debenhams which I'd heard had a sale on. The rumor was true and so we were able to afford a nice tefal one, we also got a carving set as we often eat roast and so we thought it would be a wise thing to own, as trying to carve without one is annoying, difficult and actually kind of dangerous. We started looking for clothes for Luke but his hayfever got too bad and so we had to head home to closed-window safety. Abandoning the plan for bacon sandwiches (despite our new pan) we stopped in at Baskin and Robins and bought some ice-cream yay! That evening we invited Karolina over and had roast and used our fantastic new set. Edward joined us at the dining table and covered himself in asparagus and broccoli, it was so amusing that we decided we should hire him out for corporate entertainment!

Baby for hire ....weddings, Bar Mitzvahs and corporate functions!

Wednesday Another busy day of tootling about doing paperwork type things. I posted a box of tiny baby bits to my gorgeous friend Charlotte as well as arranging Edward's child trust fund and his modeling contract, sadly Halifax have made a total mess of his other savings account so I'm going to have to start from scratch with that tomorrow. I made a nice dinner however Luke didn't like it as it had too many veggies in it and so I had to nip out and get him something else as I didn't have much else to feed him. I've had lots of fun with Edward today,he's been really cute, smiley and chatty, he also rather impressively managed to roll all the way over and has looked highly pesty and pleased with himself as a result ever since :o)

Argh Mummy I'm going over!! Not even the blanket can't save me now!

Looking back on this now I actually realise I've done a lot more than I thought I had, haha no wonder Luke says he never sees me and I'm always busy!!

Tomorrow I'm going to meet some mummy-chummys, it's very exciting, but I'm VERY nervous as under all my loud noisy front I'm actually quite shy....best not to think about it too much or I will woss out!

Over the weekend...

2008-06-15T07:38:00.001+01:00

I had a pretty chilled out weekend. Saturday I floated about not doing much for most of the day as I felt kind of tired. Luke and Karolina slept in till gone 1pm after their late night WOW exploits. I spent the morning trying to find something to do for Fathers Day as well as just looking at general things to do in London for free or very little. In the evening I made a nice dinner with lots of help from Edward, Shellie and Simon came round as they had a party in Camden and so were staying the night with us. It was most amusing as Simon said hello to Edward who though it would be delightful to smear rusk on Simon and his nice party clothes, and when Simone exclaimed 'ew' Edward burst into tears, obviously very distressed that his 'decorating' efforts were not appreciated!

Sunday we had planned to go to a posh restaurant who were doing a special Father's Day lunch, however poor Luke felt so ill with hay-fever that we canceled it in the end. However he did of course still get his lovely card which Edward 'made' me cover in glitter hehe, as well as some hankies with 'Daddy' embroidered on them which I ordered ages ago specially.

I think Luke felt a bit down, a bad combination of hay-fever and his ongoing struggle with being a daddy, that wasn't helped by the fact it was Father's Day. He is a perfectly good and capable daddy and he loves Edward very much, just in typical Luke fashion he constantly thinks he isn't good enough and that he's not ready, as always it just comes down to self belief and self confidence, both of which I'm sure will grow in time.

As Luke wanted to sleep, and we were hungry, we left him to it and went off down the road to the same Thai place Shellie and I went to last time she was here, and yet again had a very scrummy lunch. We then walked across Hyde Park, where we parted ways, Shellie and Simon went off to Victoria to get the train home and Edward and I had a think about what to do. I was going to just go home, but then decided it was such a nice day it seemed a waste to stay inside, and that I was bored of being inside, so we went to the Marylebone Summer Fayre.

I have noticed that I'm almost a bit manic at the moment about 'doing stuff' I think that I'm just so aware that my lung function is really low, and having seen the stories of so many end-stage cf people who just become totally trapped indoors I am desperate to make sure I don't waste the time I have. I'm going to be trapped inside for months if not years capable of doing next-to-nothing, so I feel I should make the most of the freedom I have now, while I'm still lucky enough to have it.

The fayre was very busy and there was lots going on, mostly foodie, Edward particularly liked all the people Salsa dancing in the street so I lifted him out of his buggy so he could get a better look. Overall though it left me feeling a bit bummed out and lonely, as though Edward is fantastic company you can't really chat to him about stuff, or appreciate things on the same level, so we walked home. It did make me look forward even more to this chummy-mummy meet next week, and more determined to be brave and go ahead with it.

That evening Luke and I had a bit of a chat about stuff, as I've been getting a bit frustrated with doing stuff on my own all the time, and him being apathetic about almost everything. His hay-fever, daft as it sounds, is a major obstacle as it just prevents us going outside and all the free stuff is outside really, such as park visiting. He is also painfully shy and not really into going and meeting new people. I'm shy too, but much better at forcing myself to be brave and ignore it, and I REALLY want to make some new chums in London. Though the ones we have are awesome we don't have many, and they are often busy so it would be nice to have more.

Overall it turned out to be quite a constructive conversation and left me feeling a lot better about things. Luke is very sneaky and does things in the middle of the night and never tells me about them...like applying to Google....I wish he would tell me as I always get cross with him for doing nothing and then find out actually he's done loads!!

I will never learn :o)

Bits and Bobs

2008-06-13T22:40:00.003+01:00

Well as you can see, down on the right, I've started a new blog http://edwardtedward.blogspot.com/ to track Edward's weaning. It's not going to be hugely exciting I don't think if you aren't into the gory details of the process but will be worth checking out for the many amusing photos of the boy smeared in food!

In other news the council have confirmed/granted our housing benefit claim. I was pretty certain we would qualify but it is nice to have the worry gone from the back of my mind. I really feel confident now about putting down roots here and so have started looking into making some more friends. I have found a mother and baby group who meet up informally, there is a trip planned for next Thursday which I'm pretty tempted to go to as it would be a good opportunity to make mummy-chummies :o)

I've had a productive day, and got lots of paperwork sorted, including things like paying the huge water bill and getting the TV license, though not very exciting it's nice to know I've got things sorted and in order. The next task is to change all direct debits and benefit payments over to our joint account.....yep you read that right Luke and I are a proper official couple now we have a joint account....because obviously the baby didn't qualify us as such hehe!

And finally, very excitingly, our dining table and chairs bought for a stunning total of £6 on my beloved Ebay were delivered today hurrah!! It will be so nice to eat at a proper table, and set a good example for Edward, I'm planning to sit his little chair in the center in the hope the food he throws everywhere will land on that rather than the carpet.

Right I think I'm going to head to bed, leaving Luke and Karolina to a late night of WOW....it will never to cease to amuse me knowing how much it would make most WOW players dribble if they knew just how gorgeous Karolina is, and that she plays.... the perfect girlfriend hehe I'd best watch myself :o)

Telectroscopes and Dinner Parties

2008-06-12T23:14:00.004+01:00

Well it's been another few exciting days.

Monday we had Andy and Chris over for dinner. I made nachos and cheese, followed by fajitas. We had a pretty chilled out evening ,though we were all so tired that we kind of sat in a bit of stupour by the end!

Tuesday I had clinic. It was great to see everyone and they were all very excited to see Edward. he had marvelous time lapping up all the attention. My lung function is holding steady around the 35% mark however we've decided to add in another drug to try and calm my asthma down, with the long term aim of getting me off steroids.

Wednesday we went to see the Telectroscope. It's an art installation based on the child-hood dream of being able to dig a tunnel right through the center of the Earth and coming out of the other side.

This fantastical contraption is the end of the tunnel that apparently goes from London to New York. You can look down it and wave at all the Merkens the other end.

I had hoped to be able to arrange to time a visit with out family that live in Brooklyn so that we could wave at each other down the 'tunnel' but it wasn't possible in the end, so we just made do with the random people that happened to be there at the time. Unfortunately Luke's hayfever was so bad that we had to head home straight away as he was miserable and in a lot of discomfort.

I left Luke at the tube station and headed off to Camden to finish off getting the last few bits for my planned dinner party. I took Edward with me so that he got more time out of the house looking at the world. Popped into the umpteenth chemist we've looked in, in recent days and FINALLY found poor Luke some flixanase so hopefully that may make him feel a bit better.

Then to the thai shop which is absolutely fantastic and very reasonably priced. I managed to get everything I needed and stock up on coconut milk as our local supermarket is always running out. The staff there are also all really nice, friendly and helpful.

We then stopped in at a little organic cafe and I had some very yummy tomato and basil soup. Edward had a bit of a lay down on the sofa while I ate. We also got a chocolate muffin to take home to Luke to cheer him up as I'd snapped at him and been a bit mean because I was annoyed that he was ill!! I know I know terribly unfair, coming from me of all people, I just get annoyed with his hay-fever constantly stopping us from doing things, but then in the grand scale of things it's nothing compared to what CF stops us doing so I shouldn't be so nasty.

Some other people sat around the sofa's with Edward and I. Edward thought the woman in the group was fantastic because she spoke in French, he got all excited and started jabbering away to her, it was very cute. Not even six months old and already bi-lingual clearly :o)

I then had to put Edward back in the sling, which was a bit of a nightmare as the very kind people sat with us tried to help! I know they meant well, but I got all flustered and embarrassed by the fact it looks so complicated and like you are going to drop your baby when you put it on, and so it ended up being the most dodgy tie I think ever done, but it was enough to hold him on till we got home so it kind of worked.

Today has been equally exciting. I had meant to go to the baby-cafe but didn't in the end as I had a bit more of a read of their website and found out that if you aren't currently breastfeeding and seeking breastfeeding support then they don't encourage you to come and advise you seek a different group. I was a bit disappointed as I'd hoped to go along and meet some other mummies, but I shall find another way.

I have decided it is time to wean Edward, I have tried to give him some rice-crackers the last few days but he hasn't been remotely interested and so I bought some butternut squash and some sweet potatoes which I pureed and froze this morning, I also did some apple.

However I didn't really have time to feed the purees to him, and didn't do it at the right moment in the day, and so in the end just decided to see what he did with a rusk.....

The answer.....spread it all over his face, legs, sleeves, tray, carpet..walls!!! haha I'm joking about the walls, but everywhere else was fair game!!

It was VERY cute and amusing, however prompted me to go out and buy a scoop bib as it became apparent that cloth ones are no use with food!

We first went to John Lewis to see if they did them, they didn't but we did get him a doidy cup which I may try out tomorrow. I almost got him some PVC matting but when I called Luke to ask him what colour to get he said not to get one as it would be a pain to wipe down, and that we could just sit his chair on the table and wipe that instead. I remain unconvinced but we will see how it goes, and hopefully not trash the cream carpets in the process.

We then went to Boots and got a scoop bib, and a variety of porridges, baby rices and rusks as I had a bunch of vouchers. I did debate buying Edward a different teething ring as most of the ones we have are too big for his mouth, but in the end decided I'd spent too much money recently and that he could make do with what we have for now, especially as ice-cubes wrapped in a hankie are the best thing really and practically free.

After I'd finished faffing in there and admiring other tiny babies that made Edward look huge, I went to HMV and met up with Luke and Vince who'd gone to buy Company of Heroes so they could play together. Then a quick trip to The Ginger Pig (the best butchers in the world!) and Waitrose before heading home. It was by now about 5pm and I had to get cracking on the dinner so it would be ready in time.

The menu went as follows...

Starter

Thai Prawn Crackers
Thai-Marinated Skewered Chicken
Home-made Sweet Chilli sauce and Home-made peanut sauce
Spicy Coconut Soup

Main
Thai Red Duck Curry with Coconut Rice

Pudding
Lemon Torte
Lemon Sponge Cake

It all took quite a while as it was the first time I'd cooked most of it, and I made everything including the curry paste from scratch, however it was well worth the effort as it was utterly gorgeous :o)

It was also fantastic to have Raj over, as it was the first time we've seen each other outside of hospital for about 18 months! He is such a fantastic friend and ALWAYS visits me when I get stuck in, so it was nice to be able to return the favour and make a big fuss of him for a change.

All in all a lovely evening spent with our gorgeous friends....and to top it off Raj bought me *cough* sorry EDWARD a present :o) It's a very funky cube that makes lots of noise and has lots of different textures on it no doubt it will keep me *cough* sorry EDWARD amused for hours hehe!!

Picnic's and Swimming Trips

2008-06-06T17:50:00.001+01:00

Yesterday Edward-Tedward and I went to the park with Alex and Faith and had a yummy picnic, even Edward had some, he tried the pitta-bread and some carrot, he didn't really eat either but sucked them very convincingly.

In the evening Aaron came round for a bit, though was stressed as he was having problems with his girl and about to fly out to Hong-Kong to represent the family at his grandfathers funeral. That aside though it was lovely to see him, and he had fun playing with Edward.

Today very excitingly Edward went swimming for the first time. I had really hoped Luke would come, but he felt too ill in the end so we left him sleeping. Thankfully the life-guard was really nice and took some photos for us so the moment is forever captured :o) We swam for about half an hour then Edward got a bit cold and tired, so we got out and he had some milk and then went to sleep and stayed that way for most of the day!

I then did some bits and bobs round town, before coming home and having a rest :o)

A lovely day in the sun with Aunty Shellie

2008-06-04T20:00:00.001+01:00

I meant to tidy the house this morning but got utterly distracted into planning for my dinner party tomorrow, well I thought it was tomorrow, turns out it's actually next Thursday, but at that point I was still blissfully unaware of this fact and so Edward-Tedward and I headed out into the sunshine to buy in the bits I needed leaving a very poorly Luke sleepily dying of laryngitis at home.

In need of wooden skewers I headed to Woolies, who I also thought, quite correctly, may sell baby sunglasses. After trying on all the ones they had we finally settled on the ones in the above photo, tempting as the Spiderman ones were we thought that at five months old velcro straps were going to be alot better than plastic ones.

The supermarket didn't have everything we needed so we headed up to get the bus to Camden. As we sat waiting Aunty Shellie called to ask if we were still on to meet up for lunch. I'd totally forgotten about it, but said 'of course' and that I'd meet her down by Marble Arch in about 20 minutes time. I nipped home to change Edward and pick up some of his milk then up to Marble Arch where Shellie was waiting.

We decided to go out for lunch and started looking for a nice place round where we were. Nothing really took our fancy, and by that time we were almost level with our flat, so I took Shellie in to see it. She liked it lots, though as we arrived the oxygen man was also there so he gave me my new cylinders which are not liquid booo!!

Mummy called while we were there to ask how Shellie's appointment at the brain hospital had gone. The doctor decided that she just had a very severe type of migraine, (the type that makes you lie bed bound in a dark room for almost 4 months straight!) and that he had a few drugs he could try, however he didn't know why she was getting all of the wierd symptoms that she gets and he can't offer her a follow-up appointment for 8 months even though he would like to see her sooner. Grr it's such frustratingly crap service, it makes me realize how lucky I am being looked after by the Brompton.

After I'd suitably showed off my lovely new (though still very messy) flat we headed out to a nearby Thai place I'd seen in my scout of the area that I did when we moved in. It was VERY tasty and very reasonably priced, the staff were all lovely too and made a big fuss of Edward. He had such a good time that he started to drool!!!

After lunchie munchies we decided to wander down to Hyde Park, which we did, it was very lovely. You just don't realize how big it is, and it's amazing how you can be in the center of the city and yet just see trees, it's fantastic :o) We just both kept exclaiming that we couldn't believe how nice the park was and that it was so close to my house. We eventually came to the lake where we had a nice long sit down, we also had lots of fun looking at the geese and ducks :o)

We then mooched very slowly and in a very lost fashion all the way to Victoria!!! I can't believe how far I walked, but like I said to Shellie seeing Sam waiting for her transplant and tragically not making it combined with my horribly low lung function has made me even more acutely aware that I have very little precious time where I will even have half a chance to wander about as freely as I do now, all too soon I'm going to be tied down to a wheelchair by oxygen tubing permanently, so few and far between as days like today may be I'm going to do my up-most to enjoy them.

Once at Victoria we went to Costa upstairs to get a drink and wait for Simon to finish work. I did wander off for a bit to see if I could buy some milk for Edward as he was getting hungry, but nowhere sold it. Simon then arrived so I sent he and Shellie home, and resumed my original plan to go to Camden and get the last few bits for the meal tomorrow.

While on the bus I got a call from Luke to say the gang were coming round as agreed and when was I going to be back as they were going to be there in 20 minutes. I don't actually remember remotely agreeing they were coming round today haha but then I don't appear to have a good grasp on what I've arranged of late so it's quite possible! I was unfortunately already on the bus to Camden and though I abandoned my plans to go there it meant it took me ages to get back as I had to go a very convoluted route.

The gang were already here by the time I arrived. We spend the rest of the evening chilling and chatting, and ordered some yummy noodles from a place recommended by Vince. Karolina got very excited as Luke helped her with her WOW account so now she can play all summer while she's home in Poland missing Vince, and Rabia entertained us with tales of how she was planning to work in immigration and decline the entry of all Canadians to the country!!

It is most certainly now time for sleepies......goodness knows if my legs will actually still work when I wake up tomorrow!!!

Sunday lunch at Greatham and the kidnap of Aunty Thea!

2008-06-02T16:20:00.001+01:00

Edward all packed up and ready to go for Sunday lunch in Greatham :o)

Edward 'hanging out' in Greatham after tasty Sunday lunch.

We haven't made it down to Greatham for FAR too long! Between various people being ill, and general disorganization it just hasn't happened , but finally this weekend we made it down and had very tasty lunchy-munchies :o)

It was nice as lots of the family were down, including Cousin Emily and Duncan, and Luke's Uncle Tom who usually lives in Thailand, aswell as Luke's Aunty Deb, his other cousin Camilla is getting married on Wednesday and so everyone has gathered there before heading over to Ireland for the big event. We wanted to go but sadly in the end just couldn't afford it :o( however we were treated to seeing Uncle Fred in his fantastic and very dashing outfit....sadly not with a pink shirt despite Tom's valiant attempts!

We thought it would rain but thankfully the weather picked up and we ate outside on the big table. We've done it before, but still there is something just a bit wrong about eating roast outside like barbecue food, my brain just doesn't like the break from tradition!

We all sat about feeling nice and fat for a while before heading home 'accidentally' kidnapping Aunty Thea on our way out of the door YAY!!

Aunty Thea and Edward on the sofa, I suspect that Edward may actually be sneakily laddering Thea's tights which is why he looks so pleased with himself!!

When we got home Luke went to bed as he was feeling really tired and rough. Thea sat up with me while I did my treatment and we looked through the photo albums I've made. I know I have them all on the puter, but there is just something special about proper printed out photos. We made it to bed around midnight me in the full knowledge Thea was going to sort Edward so I would get a lie-in in the morning yipee!!

The next morning after my lovely lie-in we all headed out to do something touristy in London. We stopped in at the photo shop to get Thea and the family some proper photos as they only had one rather naff one printed on normal paper. However we'd failed to actually put the photos on the USB key and so had to go home and try again. At that point Luke decided he was actually feeling to rough to come with us and so we left him and went of to Selfridges where Edward flirted with the models that were advertising hair-care things while Thea and I looked at lots of overpriced clothes and tasted the most vile chocolate stilettos ever made.

We had wanted to go to the Tate Modern but there sadly wasn't time as Thea had to get home and there were some delays on the trains, so after collecting our photos we headed to Victoria. I bought us some lunch, and some polos for Uncle Fred as he hadn't been able to come to London and packed her off home. Edward and I then sat in Victoria and ate our lunch as we were both starving, we then got the bus home. I 'popped' into the supermarket to get some milk and Ribena, and ended up burying the sleeping Edward under a weeks worth of shopping haha!!

That evening Luke and I had roast dinner again as I'd picked up a reduced 'posh' chicken, though it smelled a bit strong it was actually ok, and the best chicken out of the three we've had recently :o)

Bouncers and Firemen

2008-05-29T15:56:00.001+01:00

Does the phrase 'knee high to a grasshopper' seem relevant to anyone else? Or is it just me?!

Edward-Tedward is slowly discovering the joys of his baby-bouncer. He's not quite got the hang of it yet and spends quite a bit of time just dangling, but everyone so often has a little spurt where he hops about in a circle leaving a delightful circle of drool around him like some sort of bizzare snail!

The very dramatic fire at our apartment block, just days after we moved in!

We have settled into our lovely new London life really quickly, getting out to the shops is so easy now which is liberating for me, we have even had the chance to go out to the cinema (courtesy of Cousin Emily) to see the utterly fantastic Iron Man.

We are still getting used to a few things though namely our new phone which sounds like a fire alarm, the entry phone which also sounds like a fire alarm, and well actual fire alarms! Our neighbors down the hall managed to trip it by burning the dinner all very un-dramatic however later that day someone in another section of the building managed to burn their actual house! It was all rather exciting as three fire-crews, ambulance and police all arrived. The fire was quickly contained and put out and no one was hurt thankfully. It also gave Luke and I the perfect opportunity to settle our long running dispute about what the towers by fire stations are used for. I always thought they were for practicing, Luke thought they were for drying hoses. Turns out we were both right, though the fireman I asked suggested I fib and pretend that they were just for drilling or even better to pretend he didn't know hehe!

A very loud Crosslandish Sunday lunch

2008-05-25T15:26:00.001+01:00

Grufffy and Diana educating Edward in the ways of Little Feet

Diana and Edward rocking some serious air-guitar!!

Mummy, or Grandy-Mummy as she is now known invited us all round for Sunday lunch as Shellie was already going to be there, and Diana and Edgar were over from Berlin and Portugal (yes there had been a Marillion gig, no I didn't go boo!)

We left pretty late, but as Mummy hadn't even bought the roast when we left I wasn't too worried. It was quite exciting as Luke and I went from the newly refurbished St. Pancras, it was the first time either of us had seen it. It's very nice, but given it's very air-port feel made me get terribly itchy feet and left me dreaming of jetting off to distant shores...oh well shall have to comfort myself with the tasty cakies we bought at M&S.

When we got to the Grandparents we were greeted by chaos, even more than I've come to expect! After years of having their bed downstairs in the lounge following an incident with the waterbed my parents have FINALLY had a new carpet fitted upstairs and so have gone back into their proper bedroom!!! It's still a mess and they haven't got their proper bed in their yet (instead they have stolen my brothers poor boy!) but believe me it is significant progress and I'm very proud of them.

They have also changed my old bedroom, I did have a fitted bed, desk and wardrobe, as well as lots of shelves but it has all been taken out, as well as the wallpaper being stripped and being painted white. It looks very bizzare and in my opinion smaller, it made me a little sad to see it so different, but oddly jogged very vague memories of what it looked like before I had the aforementioned furniture fitted.

Daddy or Gruffy as he is now know by Edward, was being very cryptic about it all, and talking mysteriously of 'plans being afoot' to change the house now all the children had gone ( despite poor Alex still living there for the best part of the next two years, not to mention uni holidays)... said 'plans' roughly translate as 'your bedroom is now my guitar room, and I'm going to try hard to get your mother to throw some crap out, whilst ignoring the fact almost half of it is actually mine!, ah well for them it is progress :o)

Shellie was very fazzled as she was trying to cook roast for 12, even though it was only the third one she'd ever cooked. Personally I find it bizzare you can get to 25 and have only cooked three roast dinners, and having cooked for that many practically every night at uni am not remotely fazed by it, but she was merry and martyring and I was in no mood or state of health to cook so I left her too it and snuck off to see Grand-Mummy who was in bed feeling pretty rough having had a nasty fall a few days before, naturally I took Edward-Tedward up with me as I knew his little cheeky face would cheer her up pretty speedily :o)

Eventually we got called down to dinner, and it was VERY tasty :o) and I ate it all. It was a very noisy affair as Daddy was playing his latest music find and everyone was very over-excited, but it was jolly fun. Afterwards I watched Alex and Luke play on the PS3 for a while and dozed on Luke's arm. Gruffy stayed with Edward in the kitchen and played him lots of music it was very cute as he was so excited. Not sure how Edward's hearing will fair in the long term but at least now his has an appreciation for Little Feet :o)

Far too late we headed home, driven proudly to the station by Uncle Alex in his new car :o)

The Big Move

2008-05-18T14:35:00.002+01:00

Edward checking out the new futon on the day it arrived!

Friday 16th May
A busy day for me today sorting out the last few bits before the move, which up untill today I don't think I really believed was actually going to go ahead, it all seems to perfect I'm waiting for something to go wrong!

I got a taxi mid morning down to Caterham to get the train to London as I had to sign the contract and pay our deposit. The deposit was partly paid online, but the transfer limit meant I also had to get a bankers draft to cover the last portion. This was sort of exciting as I'd never had one done before, but the person trained to do them at the bank was busy so I had to wait over an hour! However I did not waste the time and instead went to the little cafe at Caterham station and had a baked-potato and cheese which was very tasty, it was silly but it made me kind of sad that I wouldn't come past here again often. Eventually bankers-draft in hand I made my way to London. I dropped it off at the estate agents and signed the contract it was a very exciting moment :o)

I then got the bus over to the Brompton as I was due at clinic, it all went ok with my lung function holding steady around the 35% mark, not as high as I'd like but stable at least. We decided to up my inhaled steroids to get my asthma under control so that I can do more effective physio hopefully if I can keep my lungs clear I can stay out of hospital for even longer which would be lovely, however if this doesn't work I'm going to try oral steroids which are stronger.

I then made my way home to pack. I was a little miffed to find that Luke hadn't packed so much as a toothbrush by the time I got back,his excuse being that he needed the boxed I brought home with me......mmmm...... however some efficient nagging later and both he and Andy were up in the loft bringing down the boxes, whilst I packed the rest of the stuff from round the house. I think we all made it to bed at about 1am.

Saturday 17th May
I had to head up to London early as I had to meet with the inventory clerk (who was documenting the condition of the flat in detail to ensure no deposit money is unfairly taken at the end of our rent-contract) she was also giving me the keys! I took Edward with me so he'd be out of the way whilst Luke and Andy humped boxes and furniture into the van.

The inventory clerk went round the flat with a dicta-phone talking at incredible speed noting down absolutely everything in minute detail whilst Edward snored his head off and I trailed after feeling rather useless despite my original goal to be really picky about every single hairline crack!

Then began the LONG wait for Andy and Luke. I floated about the flat for a while, changed and fed Edward, then with nothing better to do went to sleep on the lounge floor. I phoned Luke and Andy a few times, as well as various people I was buying furniture from but then my phone ran out of battery, soon followed by my i-pod. leaving me with nothing to do, no way to tell the time and no way to contact the boys, so I couldn't even nip out for hot-chocolate as I had NO idea what time they would arrive! It was a quite bizzare and surreal period of time as I was drifting in and out of sleep and lost all perspective over what time it may even vaguely have been, whilst sat in a totally empty flat watching the drizzle with only little Edward for company!!

Finally at around 6.30-7ish they got there, and we unloaded the van. Well I say 'we', Andy and Luke did all the work really, I continued to be quite useless and only managed to carry in a few things before I got too tired and breathless to do much other than watch Edward, who was yet again snoozing.

We called Vince and Karolina who came round to help unload. It was lovely to see them again as it had been ages. Finally it was all done, we debated going for food but everyone was a bit tired, so we just bought some HagenDaz and Jaffa Cakes and sat on the lounge floor together eating them, it was good fun. Poor Andy Pandy then headed home for bed!!

Luke and I rolled out all the duvets and blankets we had, aswell as my pilates mat as a makeshift bed, Edward was lucky enough to have his cot in his own room for the first time, and that was how we spent our first night in our new home together :o)

Sunday 18th May
As if they hadn't done enough yesterday, today was to be another long day of humping heavy things around for poor Luke and Andy. As we don't have much money at the moment it was tricky to afford new furniture, originally I was going to go to IKEA but they didn't have the bed we wanted, and all their sofas cost too much, so I reverted to Ebay :o) The only downside being of course that we had to go and collect them all. So out went Luke and Andy to find all the random sellers and pick up up bed, matress, sofa and futon. Really I shouldn't have got the sofa and the futon, but I wasn't sure I'd like the futon and the sofa was such a bargain I couldn't resist. Actually in the end I think we will keep both as the sofa is awesome and the futon is just so handy for guests.

I unpacked while I waited for them. I got quite a bit done, but it was very frustrating as I was so breathless I had to keep resting for ages between each load or pile of stuff I carried from one room to another. However I got Edward's room pretty much sorted and all his stuff into his drawers which I was really pleased with. It was also nice to feel useful after not being able to do much the day before.

By the end of it all Luke and Andy were shattered, and both of them were in agony, both in all tiier muscles but especially their hands which were raw from all the carrying of poking sharp edged boxes and furniture. I was also feeling pretty rough, a bad combination of not having time to do all my treatment mixed with all the dust of moving made me feel really quite ill and awful, however we realized I'd left some of my drugs in the fridge at the last house, so I had to drive back with Andy to get them. It wasn't a bad run back, and we stopped and got some very tasty sandwiches, however by the time we got there I was wheezing terribly and just wanted to curl up and sleep, however knew it was best to go home so I could do all my treatment. I gave Shellie big goodbye cuddles, as I hadn't had the chance the day I left, and then Andy took me down to the train station. Luckily there was one going soon, and it was already on the platform so I didn't even have to wait in the cold :o)

When the train got to London in went into a wierd stop near the London Eye, too tired to contemplate faffing about in the underground I just got a taxi home which was actually pretty exciting as we went past Buckingham Palace.

I had expected to find Luke unconscious on the mattress on the floor, but no bless him he'd assembled and made the bed all ready for us to go to sleep...phew!!

The Week Of Sunshine

2008-05-11T14:14:00.001+01:00

As you can see it's been a fantastic but busy week, full of glorious sunshine. It's been lovely to be able to get out in the garden even though I must admit I haven't actually made it out there as much as I should have.

Mostly I just wanted to make a statement about how happy I am at the moment. So many of my diary /blog entries are depressing and miserable, full of moans about CF and not being able to breathe and being stuck in hospitals.

Right now is just wonderful, not perfect, but in a good real-life sort of way that doesn't matter. Yes my health could be better, and yes Luke and Edward can be monkeys, but with the sun shining and both my boys cuddled round me that seems kind of irrelevant. I wake up each morning to Edward's smiles, and fall asleep each night in Luke's arms covered in kisses. Though sorting the flat has been stressful, and not over yet, it is still fantastically exciting to think that soon we will be back in London where we will have a house to ourselves. The convenience of the city is also going to be liberating, I have missed it every day since I left and can't wait for everything to be either on my doorstep or just a bus ride away.

Here's to a long summer with my family stretched out in Hyde Park under blue blue sky :o)

Grand Designs

2008-05-09T13:17:00.001+01:00

Luke looking very cute and Daddy-ish :o)

Luke and Edward looking at the groovy huts at the Grand Design we think should be put in the woods at Greatham for the teenagers to hang out in :o)

After the drama and excessive walking on Tuesday we, well I, spent Wednesday resting and chilling out. Luke played WOW, and I watched bad reality shows with Shellie, including lots of episodes of the Apprentice and Project Runway.

Thursday the plan was to be at the estate agents by 12, but in reality we didn't make it till about half past. The agent there was very nice though obviously new as he struggled with the computer system. After we'd finished there we went to Starbuck's to feed Edward and also to get some drinkies and nibbles for ourselves. I had a berry drink and a butterfly cake, Luke had a hideous creme caramel thing that taste burnt and some cheesecake which obviously wasn't as it disappeared at speed :o)

After our naughty use of taxi's on Tuesday, and given the fact we were feeling rather poor as the costly reality of our new flat started to sink in we decided to be good and brave the underground. I tried to carry Edward's buggy as I've done it before, but I'm just not strong enough at the moment. So in a very impressive demonstration of manliness Luke picked carried everything down into the tube and we headed out to the Excel center in Docklands.

We are both big fans of Grand Designs and often watch it, then plan our own dream house so when we saw the show advertised we'd decided to get tickets and go along though we weren't quite sure what to expect. There had been a show on Channel 4 all week coming live from the exhibition but we'd decided not to watch it as we didn't want to spoil anything.

We got there, and after some compliments on our 'Rolls Royce of a buggy' we wandered into the show. It wasn't entirely what I'd expected, I think I'd thought it would have lots of entire rooms and houses on display. In reality it was lots of 'stalls' selling furniture, gadgets and then mostly materials such as granite with which to build and furnish your grand design. It was still pretty cool, and fun to look at all the things, however I think we would have got a lot more from the show if we had a house or were building one. Which I suppose in retrospect seems kind of obvious.

There were some fun exhibits there however, such a a clock that dripped glue as it rotated to form a sculpture, they had a camera recording it's progress so I suppose you will be able to watch its full formation on the C4 website or something. There was also a display where you could take a tree seed and in it's place leave a pledge to make the environment better. I took a silver birch seed and pledged to make more of an effort to recycle more of my medical waste as there is so much of it and a lot is card. Outside there was a house they were building, we hoped to see Kevin McCloud but he was, disappointingly, no where to be seen. I also had a look inside a little house called an Eco-pod, should the flat fall through I think I may buy one and have it erected in my parents garden.

Both thoroughly exhausted, especially poor Luke who'd had to heft the buggy and rucksack around single handedly, we headed home.

We have been half planning a trip to London to do something for ages, however haven't been able to decide on what to go and see, nor have I been any where near well enough, so it was REALLY nice to finally be able to go out and see something.

I suppose technically this was in fact our first family outing ....how very grand :o)

Flat Hunting

2008-05-06T12:12:00.001+01:00

Well after months of sitting about doing almost nothing due to either illness or sheer laziness this week finally saw us all be busy little bees :o)

The week kicked off on Tuesday when we went to London to view flats, I'd tried to arrange a bunch of appointments on the Friday, which had been both exciting but frustrating. A lot of the agents turned me away outright because I mentioned the dreaded 'DSS' word, however once I stopped mentioning that things all got a lot better, however a large number left me with maybes or 'so and so will call on Tuesday'.

It was the first time we'd even had to be out the house by a certain time which proved interesting and threw us both into a bit of a spin as I danced about with my nebuliser and Luke stood holding Edward's bag asking me what he should put in it. Despite the chaos however we made it to our first appointment on time. It was lovely quiet little street not far from the Edgware Rd. and the flat itself was lovely, however it was on the 1st floor. We didn't rule it out but knew if we saw something on the first floor, even if it wasn't as nice it would win outright just through sheer practicality.

We then had a bit of a gap between appointments and so decided to head over to Baker St. and get some food for us, feed Edward and find somewhere to change him. While we were there I also started opening Edward's savings account but annoyingly the woman was too busy to see us, so I did it over the phone, then the bloke buggered off and I couldn't find anyone to photocopy my passport, which was annoying as it means I'm going to have to go in another time.

I changed Edward in MacDonalds despite Luke and I's significant reservations he may catch chav germs. He screamed the entire time we were in there, clearly he has taste, and then promptly fell asleep the minute I put him back in his buggy so he didn't get fed in the end! (well not till a bit later clearly I didn't starve the poor child)

The second flat was split level over two floors, the bedrooms were downstairs and a bit dingy a fact not helped by the fact all the shutters were closed. The lounge and kitchen upstairs however were pretty nice, as they had really high ceilings and shutters. It wasn't as nice decor wise as the first place, however it won out on space and the fact it was kind of first floor.

After that Luke and I decided to go and get us some lunch at Zizzis as we hadn't eaten there for ages. They have changed the place it's all green and black now, which though trendy doesn't entirely go with the Italian food. While we were waiting for our meal to arrive I woke Edward and fed him, though kind of bashed his poor little head on the edge of his car-seat ooops!!

I realized we were going to be a little late for our next appointment, and phoned the agent who luckily was able to hang around and wait for us. We got a taxi over as we were late, and also because I was starting to get pretty tired having walked most of the way up and down between Baker St. and the Edgware Rd. more than once.

The taxi dropped us outside one of the entrances to a huge apartment block, we hung about looking a little lost debating which way to go to find the agent who was going to meet us outside Natwest. A big black chap, who turned out to be a porter at the block, came up and asked if he could help, we told him we were waiting to meet an agent, and he asked which one, clearly knowing most of the ones that regularly show people the block. He wasn't familiar with our one, but took us round the corner to Natwest and wished us all the best. It was a really nice warm greeting to the place and set Luke and I's hopes high.

Our agent finally appeared and took us round to a different, and much grander entrance that had kind of gardens. We went into a side entrance off that main courtyard into a marble lobby. The lift was only big enough to take Edward and I, so Luke and the agent went up the stairs. The hallway was carpeted and very clean and quiet, he took us to the end to the apartment he was going to be showing us.

Luke and I were both pretty excited as the whole place seemed really nice, and when he opened the door we were both thrilled as we looked into the wood floored hallway lit by nice spotlights. We walked straight past the brand new sparkly kitchen and through the double doors into the massive bright lounge that looks out over the gardened courtyard. The agents phone went off and while he answered that Luke and I showed ourselves round, which actually suited me fine as I find hovering agents kind of irritating. Both the bedrooms were big doubles, rather than a double and a single with a double bed squeezed in which is what you usually find in London. The bathroom is super swanky with a huge deep bath, and one of those showers that has those big wide heads. Oooo it was so exciting!!

As we were stood outside the flat leaving, and the agent was locking up Luke laughed at me and said I had that glint in my eye and he was pretty sure this would be the one. However we agreed it was best to see the last one, as so far each flat we'd seen had been better than the one before.

So back we went over almost to Baker St. again and met the agent outside the flat. He took us into the building which like all the buildings down that street had the feel of being the kind of place where diplomats and very rich business men stay. He took us down into the basement and showed us the flat. I don't know why but I just didn't like it at all, it felt oddly like a hotel, and was tiny and not all that clean, it did have a nice little courtyard though which was very tempting. Overall though we decided it was a 'No' and that we should call the agent about the flat in apartment block.

We walked down to a park we'd seen hoping we could sit in there, but sadly it was a private one and you had to have a key :o( So sat in a very glamorous fashion on a salt bin I called the agent and we made our offer. He said it sounded fine, but that he'd have to speak to the landlord and he'd call us back and that if it was fine we could meet up and do the paperwork.

By this point I was REALLY thirsty so Luke and I headed back to the Edgware Rd. to get a drink and await 'the call'. Luke wossed out of going in any of the Asian cafes and so in the end we sat in Baskin and Robins which was bizzarely warm for an ice-cream shop.

Finally after what seemed like hours of nervously spinning my phone around on the table each of us pointing out to each other what a marvelous place to live the apartment would be the agent finally called back, and after clearly reveling in his dramatic moment told me our offer had been accepted. We arranged to go to his office to pay our deposit and sign the paperwork, and hopped in a taxi.

We weren't sure we were in the right place at first as the address on the business card was this huge swanky glass building with one of those freakishly quiet lobby's with imposing security guards. However we were assured we were in the right place, and had photos taken of us to go on our security badges. It seemed a bit overkill till we noticed that this building also happened to be AOL's HQ.

After a rather embarrassing incident involving a stupidly narrow doorway and Edward's buggy we made it into the agents office's and signed the paperwork and paid our monies. He explained that we were now going to be dealt with by another agent who would do all the contracts and things as he was just an introducing party and that the property wasn't actually marketed by him. In hindsight it was a bit dodgy and I think we were a bit ripped off by him as he charged us £175 just to show us one flat, but you live and learn! And actually the agency we are now with are far more reputable and I'm a lot more comfortable giving them disgustingly large amounts of money. (Even though technically it's my sisters money and the HB that's not the point!)

Exhausted and in no mood to negotiate buses or tubes we got a taxi back to Victoria and came home to bed!

All fingers, toes and eyes crossed the apartment is ours whoooo!!!!!

Been a while...

2008-05-01T16:31:00.001+01:00

Like so many blogs upon the web this one has been horribly neglected for far too long, almost a year in-fact.

There are many reasons for this, partly I lost my log in details and couldn't be arsed to spend the whole 3 minutes it takes to find them. The last posts on here were just before exam season where I was rather busy handing in course-work and cramming so I just didn't find or make the time.

Not long after that I found out I was pregnant. I didn't want to write about it in public, I didn't want anyone to know because I was so scared I would loose the baby and I didn't want to have to keep going over it to everyone, and it felt like a lie to write and not talk about the most major thing going on in my life. In fact for most of the last year it has been all that happened in my life, as it took so much from me all I could do was sleep and grow my gorgeous little boy. I'm sure at some point I will write about the pregnancy in detail but there are many aspects of it I find hard to think about and I'm not in the mood and this is not that kind of post.

Edward Lawrence Crossland Dallyn was born on the 21st December 2007 and everything since has been rather beautiful for the most part. He is the most perfect little baby you could possibly wish for. He is so well behaved all the time, and recently has started smiling and giggling. It is such a joyous thing to fall asleep wrapped up in Luke's arms knowing that I will wake up to see little Edward smiling at me from his cot in the morning.

I'm enjoying being a mother very much, it's a role to which I'm naturally suited I think. I enjoy looking after people and fussing, which is perfect as that's just what babies need. I also love all the toys I now have an excuse to play with, especially the ones with that crunch-crinkly stuff in, it just feels so cool and makes the most awesome noise!!

My university course has gone on hold, however I intend to go back this September, I hope to go full time, but even part time would be lovely as I miss it terribly and I miss using my brain. I actually did some acupuncture the other day for the first time in ages on Luke's mummy, it didn't solve the problem, but it made an aspect of it a little better which I'm quite proud of.

At the moment we are looking into moving back to London. I have missed the city every day since I left last summer to go and stay at Luke's. We didn't move back there in September as we thought living with my sister in Caterham would work well, sadly is hasn't as we are too isolated and the whole house is full of mould and smells of cupboard!!

My health has been ok, but not brilliant, I started to pick up well after the pregnancy, but then have had a series of tummy bugs, colds and an infected port-a-cath which have kept me in hospital and away from my new family far too much. However I'm feeling very positive now and hope I can get a few really good clear months at home to enjoy the company of my gorgeous boys :o)

Drinkies With Cousin Emily and Duncan

2008-04-29T14:50:00.001+01:00

I'd actually lost track of when we were supposed to be having our drinkies with Emily as Luke had 'arranged' it, and I'd actually thought it was going to be the day after, however when Emily texted to check it was still on for today I agreed as Edward is due jabs tomorrow and I didn't fancy taking him to London after those as he's often crabby.

It got to quite late in the afternoon before we headed out. I was tired and scared of getting more tired when out, as I often do when I haven't left the house/hospital for a while, however I knew we'd enjoy it once we got there. I contemplated putting in my hair extensions, but didn't really have time in the end, so just shoved in my purple streak (which Andy noticed later without prompting, good Andy!)

The journey up was uneventful, though we kind of dreaded leaving the tube at Great Portland St. as it was peeing with rain. However the pub was really close so we just went for it and actually didn't get too wet. The pub was really nice, and we each got a drink as we thought it would be a while before Emily and Duncan arrived.

Actually they weren't long at all, and arrived before we'd even sat down. We were seated in the corner on the sofas. Edward had some milk and then lots of cuddles and bouncing with Emily who may be his new biggest and broodiest fan! He then decided daddy cuddles were better as it gave him a much better position for eyeing up the waitresses.

We chatted about lots of things, but mostly the complexities of the Greatham family politics and our planned move to London. We had thought that another one of the cousins from Ireland was going to join us, but he couldn't in the end, which meant we never ate more than nibbles, (discovering that shocking Luke likes hummus!) but overall it was a really fun evening out, and it was a shame when we had to head home.

The plan is for Emily to have Edward at the weekend so we can go flat hunting, they are planning to take him to the park, maybe in his buggy, maybe in his sling, which should be fun :o)

Note - sadly when I tried to arrange viewings they wouldn't do them at the weekend, but as we are hopefully going to be living in London soon I'm sure there will be plenty of opportunities for Edward to go and play with his favorite cousin!

A Response To The Wordpress

2007-05-09T14:08:00.000+01:00

Dear You

I want to write to you today, I cannot justify nor untangle my reasons why. I want it to be selfless and comforting to you, though I suspect it is only a means to comfort myself.

I read what you write, whenever you post it, and though I often phrase long passionate replies in my mind, I rarely write them. I don’t know why I do that either, which leads me to think that maybe today is simply the outpouring of all of those previous unwritten sentiments.

I love you and have since the first time we met, though it is something I strive to forget because it is so absurd, yet, every so often it flares like a bright flame cool and utterly precise and unquestionable in my mind and I miss your company as a friend even though I never truly had it.

All of this spores from what you wrote, leaks out from all the things you didn’t write. I hate it when you are fake, when you gloss over and edit out in order to please your public, in order to make it more palatable. It strikes me sometimes you are trying to be as inspirational as Emily who decorates everything with pink awe inspiring glitter. You are not her and you do not need to try. You are something darker and colder, depressed into a state of cutting weariness by the very fabric of what you are and it makes you one of the most beautiful creatures I have ever witnessed. It makes you more like me.

I dislike the strained metaphors, but take strength from the true ones. I admire the harsh honesty you inflict upon yourself the most. I suppose it is quite vulgar of me to take such solace from the observation of you torturing yourself with the ideals of who you want to be, but I conclude that I as do it to myself constantly it is equitable.

There seems to be something harsh about criticising your thoughts when they are so personal and yet so freely proffered, however you are an artist whose entire profession is constantly measured by people who know little, and like to think they know much, so in that fashion this all becomes quite fitting.

You wrote to me some time ago asking about my new life, I never responded because I didn’t know how to. I wanted to enthuse about knowledge and adventures however whenever I sat to compose all that came to me was the distinct sense that you wanted to hear how hard it all is so that you didn’t feel so alone, and like you were missing out on so much.

I have learnt a lot here, there are whole wild days where I can feel erudition flowing into me until ever border along the fabric of my being is overcome with an ecstatic saturation whereupon it is all I can do to hold myself together and not shatter with insurmountable glee!

There are other days when I spend long glittering hours staring out of high windows wondering exactly how far it really is to fall, and if perhaps it would be best to let my broken body shatter spectacularly upon the pavement with pools of viscous blood gathered around me like blooms, rather than continuing upon a path that is so utterly refuting of it’s end destination.

I like both equally.

Most days however possess no extremes in any direction, they just lull into a sustainable reality that glows with my love for Luke and that focuses upon little besides what time are lectures, what time is dinner, and have I completed the treatment chart that I have so ambitiously and judgementally laid upon my desk. I am surrounded by friends who love me and acquaintances who respect me. My life is probably more perfect than it has been for a considerably long time.

I am content but admittedly unsettled, the eternal pessimist, I am waiting for it to crash, I am waiting for my world to become like yours, and question languidly to what extent I am forcing it in that direction.

I feel like I am on hold, like this is just a process to become something else, and yet it is taking everything from me and at the end I may not actually be capable of dealing with the responsibility of what I have become. Yet I love it, more than anything else I have ever done and feel like my whole life has been a sole-minded journey to the point I am at now. Incongruously that makes me feel incredibly set and determined, I have found my purpose and a clear set ideal of what I am to become and the path I must walk to attain it, somehow that makes the walking all the easier.

I want to ask you not to give up hope, I want to ask you not to let your inspirational writing sink into a method of counting down to an end you don’t believe you will reach – however it seems crass and unfair, hold your hope where you feel it truly belongs, and let your writing continue to document your tenuious life with the cutting brutality I have come to love.

Smile through it darling, for me it you are succeeding in your aspiration to make sense of it all.

My Eternal Love and Respect

Toria

Paris

2007-05-01T01:27:00.001+01:00

I woke up early on the Saturday morning as I had to finish both pieces of PPD (personal professional development) coursework, aswell as a clinic observation report. I wanted to get it all done and submitted before I flew out to Paris just incase there was a problem getting back.

I actually progressed quite speedily and got the PPD done by lunchtime, leaving me the afternoon to get the clinic-ob done. This took me a little longer than planned, mostly due to the eternal nightmare of trying to get a table to format properly in Word.

It was then a case of packing and having the obligatory 'oh shit where's my passport' moment, the whole time worrying that I was going to be late for dinner at my parents. Eventally we left the house at about 7, and made our way over to New Cavendish only to find the damm campus was closed and so I couldn't hand it in anyway!

We then walked up to Warren St., overcome with the skippy joy of steroids, and because we were running late I even ran to catch the bus!! The train ride on from there was pretty long and boring, though I did read a leaflet about a campaign to encourage fair wages and better working environments for those connected to the tourism industry in 3rd world countries. Luke pointed out though that the base of the campagin, which centred on adhereing to international law, was invalid because most of the countries involved weren't signed up to it. However I still feel the sentiment stands.

We then had a short wait in the very cold air (so used to the big warm city!) before dmama arrived with Shellie my sister, and her friend Simon. I was expecting us to rush home for fajitas but instead Shellie had decided that she wanted to show Simon around where we grew up, so we had a slightly mad drive around in the dark to look at our old primary school, and the place where Shellie was Christened as we narrated lots of silly stories.

When we got home Alex was cooking the dinner. He looks so tall and so grown up now, and when he cuddles me I can feel that he's finally turning into an adolescent, I can feel the potential of what he's going to be as an adult, as a man. I am immensely proud of him, for all his many flaws he is growing into a truly awesome person I'm proud to call my brother.

Dinner was a quite jovial affair, we were all in high flirtatious spirits and feeling like true Crosslands. Simon of course fitted into it all effortlessly just like in Gibralta. Luke was quiet, and I fussed and worried to make sure he was ok, which probably just made it worse, I should know by now he is always quiet, it's just sometimes I notice the contrast more. I want him to feel at home amoungst us, as much as I feel at home at Greatham.

After dinner Luke and Alex and I watched Doom for a little while, but I got a bit scared, and Luke didn't want me to have nightmares so he carried me out of the room! SO cute! Then I realised how late it was, and that I was actually pretty tired and cold, so I made my way haistily to bed.

Mummy had meant for us to sleep in the caravan, but in a repeat of new years no one had switched the heating on. So I decided to screw that and went up to my bedroom, and emptied my bed of all the random crap that has been dumped in there... which, for reasons quite beyond me... consisted of paperwork, knickers and many dog biscuits!!

Luke followed me up, and we got into bed. There was something special about having him there, and we talked for a while about nothing at all, it was one of the most comfortable moments of my life.

We then realsied we really ought to stop talking and sleep as we were having to get up at aboout 5am!

Note - I never wrote any more on this post, and I don't intend to, the weekend in Paris was awful for reasons I never could put my finger on. Marillion were fabulous of course, but the crazy moustached man who spent the entire gig elbowing Luke so hard he left bruises should be shot.

Sunshine And Anime

2007-04-23T11:58:00.000+01:00

GoAs Will was up in London we decided it would be cool to try and visit an anime shop as he's really interested in it, and they are the kind of specialist things you only tend to get in big cities. I also wanted to change my i-pod case as it didn't fit, and get the new Porcupine Tree album. So I hatched a shopping route, asked my other anime friend where the best shops were and dragged the techie boys out into the sparkly sunshine!

We got the bus to Warren Street, and began walking down to Fopp, my steroids had kicked in so I was feeling highly energetic and capable! About half way down Tottenham Court Road and before we got to the record store (which also has anime books in the basement!) we stopped at a Japanese restaurant to be in keeping with the theme of the afternoon. Luke and I had cooked dishes, and Will had sushi which looked on reflection to be an awful lot nicer than ours, though Luke and I were in agreement that ours had probably been nice a few days before when it hadn't been re-heated umpteen times.

It was pretty cool just to be sat out in the sunshine on a London street eating Japanese, it was hard to tell with Will as he's quiet, but I think it would be fair to say that both Luke and I felt pretty cosmopolitan and cool in that moment. Every so often it hits me just how awesome my life is, and that I'm living in one of the most fantastic cities in the world doing something I love, it really cannot be beaten.

We then carried on our way, and I made a b-line for the Porcupine Tree album the second I was in Fopp. We then went downstairs and I went to the till while the boys looked at the books and DVDs.

Further on up the road to the shop I got my i-pod case in. Very embarrassingly the thing had two different sized backs in the box, I just hadn't seen the second, and so it did actually fit after all! The boys had gone to Muji next door as it's one of Luke's favourite shops 'just too look in', so I went in to join them, but couldn't find them, so came back out again to find them hanging about looking dodgy on the streetz!

Onwards to Forbidden Planet, which we had discovered was the best place to go to for anime. I had very briefly looked at a map of where it was so that we knew where to head, but I then got confused as to which road it was exactly that we were supposed to take off from centre point. However given a little pootling we did find our way at which point I felt highly smug and proud of myself and all my genius navigation skills!

We spent a good long while in there ogling all the weird nerdy things. There was lots of debating as to whether we could afford the £200 for the entire of Babylon Five on DVD, or maybe the same again for all of the X-Files eventually settling on Firefly for under £20, however should Joss Weedon ever decide that he wants to make enough to fill a £200 box set I promise on my life I WILL buy it!!

Then very weirdly just as we were about to wander off and look at the comics this chap walked past, and I thought 'ooo I know him'. So I did that think of trying to look at him more, whilst not giving away the fact I was staring at him just in case it turned out I didn't know him, but hurrah I was indeed correct and it was my very darling old chum from college, Peter. So abandoning Will and Luke momentarily I minced over and gave him a truly massive cuddle!

I don't see him very often even though I talk to him all the time on MSN as we are both just a bit disorganised and shit hehe, so it was fantastic to get the opportunity to say hi face to face for the first time in about a year, and have a bit of a natter.

I then realised I really had actually lost Luke and Will and that I really ought to find them, as innocent young females must be careful not to dance about unaccompanied in a short skirt round what is effectively an over-sized comic book store for long periods of time...it is just asking for trouble!

I did indeed find my boys over by the X-men comics. We carried on mooching about, and bumped into Pete a few times. Though it was kind of odd I introduced Pete to Luke, as I figured it would be nice for them to know who I was talking about, and talking to all the time. Not sure how we got onto it but I think it was via some unfair slating of Titan A.E, but Pete told us we really should go and see Sunshine as it is very pretty, and quite good.

We then headed up to the till, and then made our way out and back towards Oxford Street, whilst doing that thing of comparing what each of us had bought. We had Firefly obviously, and Will had, surprisingly enough, got anime stuff.

We pootled into Virgin for a bit so the boys could have a look at games. I actually lost them again for a while as I got distracted by the band that were playing live in the basement, as they were pretty good, but I couldn't work out if I knew them or not. I re-found them up by the games, debating which one to get, then we headed out before we bought too much. At the door there was a sign saying that the band was Ash, which made it all suddenly make sense!

I then had to go as I was supposed to be going over to Oxford to get my bag off of Bryan, as in the mad pain-filled dash back to London a few days ago I hadn't brought it with me. I made my way down to Marble Arch to get the tube out to Oxford, but had to nip into John Lewis to do a pee, while I was there Bry called to say he was going to be working till about 8 or 9 probably later, and so that I couldn't really come that night unless I wanted to stay, which I didn't as it would have meant being away from Luke. There was a very pretty top in the shop but sadly it was about £200, I really have no idea how anyone could spend that much on something simple!

Kind of pleased that I didn't have to trek to Oxford, as I was now feeling pretty tired I headed back to home via Ann Summers who had a fantastic sale on, just perfect for cheering up poor sickly boys dying of nast evil puffy hayfever :o)

I called the boys and asked if they wanted me to pick up dinner, I nearly didn't as I just wanted to walk in and cuddle Luke and surprise him that I was still here, but I was also hungry and knew I wouldn't want to leave the house again once I'd got in. So Pizza Hut it was, where I ignored the request for just pizza and got extra garlic bread!

We then sat about eating, while Luke played on the game he'd bought. Will assembled his anime figure that he'd bought and it was pretty cool. He then joined Luke on the game.

Noting that this was the last I was going to get out of either of them for the rest of the night, and given I was quite shattered having walked so far I retired to bed.

Chinese Karaeoke

2007-04-22T18:53:00.000+01:00

It was Sir Vince's 19th birthday on Wednesday, so to celebrate he had arranged a karaoke party to which we were all invited, however I can't help feeling this all got a little over-shadowed by the fact Rabia wore a dress!!

We all got the bus over to China town and to this restaurant thing then up about a million flights of stairs to a little room that looked like a private-back-room in a strip club only with two large LDC screens set in the walls. A friend of Vince's called Fong was sharing the party as it was her birthday too, she was already there, as were some of Vince's Chinese friends who we don't really know.

It would be fair to say by this point I was feeling out of my depth and rather culture-shocked, however still quite determined to have a dam good time and celebrate properly!

As the evening went on everyone relaxed a little more, and did some singing. Finally it appears I have found a use for my ability to remember the words to all Girls Aloud tracks despite having only heard them a few times! However I think everyone was a little mortified i knew them, and Luke may have considered having to leave me out of principle haha!

We had food brought to us while we were there and it was pretty nice, though when it came to cake Ricky decided to eat it off of the plate as he didn't have a fork. The urge to squish it in his face was immense as it was typical Chinese cake with lots of cream and very soft sponge hehehe!!

All in all it was pretty good fun, though I think it would have been better if it had just been people I knew because then we could have been more silly and we wouldn't have been too shy to do over-dramatic duets and bad dancing!

The Chinese pop songs that we couldn't understand, and that all sounded the same were also kind of hard to get past hehe!

We then walked down to Leicester Square and had HagenDaz which was highly yummy. Julie thought the waiter was cute, so we were all teasing her, even though we quickly decided that he was probably gay, given how much he minced!

We then waited outside as Vince had nipped back to the karaoke place to pay the bill, and got accosted by all the guys from all the clubs trying to convince us to go in, offering rubbish deals that were mostly just for us girls.

They came back, but by this time Julie was feeling really poorly, my tummy was starting to hurt and Rabia and Aarron had, had enough. So we left Luke, Saied, Vince and Karolina to go clubbing without us, and got a taxi home as it was cold!

I intended to go to sleep, but ended up chatting on msn and was still awake when Luke came home, so I got to cuddle up and go to sleep in his arms which was lovely, and somthing I really needed after the craziness of the past few days.

I had no voice left, the singing was bad, the ice-cream was good...top party...happy birthday Vince!!

Long Weekend

2007-04-21T20:23:00.000+01:00

I had been really looking forward to this weekend as it had been planned for about six months. I was supposed to be role-playing with my old friends in Oxford in a game that we have all been part of for years real-time, but then things never quite go to plan do they?

It all began to go a bit pear shaped at around 9am Friday when Bryan called to tell me that Jero had mis-booked his weekend off work and so wasn't going to be able to come. I was a little sceptical about whether this had actually happened or whether he just wanted to spend his weekend off doing something else, but then it is Jero and he is hopeless so it's quite possible, and either way it didn't matter too much as we decided we'd just play without him.

I don't really know where that morning went, I mostly faffed about my room taking extensive amounts of time to get off the Internet whilst scoffing mixed nuts and dried fruit, I then admitted it really was time to get going and that I was probably going to be late for clinic!!

I was of course, I always am, but it was fine, they were so busy it was all running late anyway.

Dietitian review went ok though I'm down to 50kg again, I tried to explain that I had been rather put off doing my feed at night as I had woken up to find the tube strangling Luke, we had a bit of a laugh about that, and then decided that perhaps it would be better to do my feed in the evening or day when I'm just sat about the flat so that it interferes less.

Physio review was ok, nothing to change.Lung function measuring a stunning 40% I try not to find that too depressing but it's hard, I want it to be alot more, even just above 50% would be a nice threshold not to fall below. Surprisingly though my oxygen levels were 96% I was quite proud of that.

Saw the doctor, a lovely chap called Nick who I did some research for once that involved having electrodes up my nose...lovely! In a bid to avoid intravenous antibiotics (IV's) and after some extensive debating about what to do given resistances and the amount of drugs I've already had this year, we decided to plum for a course of a new antibiotic for me, Doxycycline, and a tasty 10mg of Prednisolone to try and calm my asthma down as it's pretty out of control.

Then it was a case of hanging about for bloods, pharmacy and to get my port-a-cath flushed, then off home.

I got the bus and went via Tottenham Court Road to get a case for my i-pod as it was sort of on the way, and it's been annoying me that I don't have one. I also had to get some new headphones as my last ones got ripped out of my ears and broken by some silly woman last weekend in Victoria train station.

By the time I got home and packed it was getting pretty late, and I was pretty tired. Just silly things like having to go around the corner to go to the cash-point seemed unfairly hard my tummy was also starting to hurt.

I did however make it across the stupid underground network of subways that is Marble Arch, and got on the 'tube' out to Oxford.Bryan, Nick and Ailsa all came to pick me up together, and we headed down into Oxford proper to get food, which as any role-player will know is probably the most crucial aspect of any role-play weekend!

By this point my tummy was hurting a hell of a lot, and my lungs were feeling pretty dreadful too, and all I wanted to do was curl up in a heap and cry, not wanting to make a fuss however I just hung quietly on the trolley and shoved things in, in a state of auto-pilot.

I was also feeling a little odd, as it's been ages since I've been around them all, and they were all talking about RPG and games they were playing, and it all just felt a bit alien to me and I felt a bit left out.

When we got home we had a bit of a debate as to what game to play. I studiously, as ever, ignored Bryan and Nick singing the song they wrote during the game that I ran (Willis and Gratch) as I hate running it takes far too much effort and means I have to stay awake. We debated running Magnor without Jero, but all agreed that it would be pointless without him, plus we'd all die really fast as he's our healer. In the end we settled on Nick running his Pern campaign for us, even though it meant we had to roll up new characters.

Ailsa decided to be a dragon rider and has a gold dragon, Bryan I actually have no idea as I got rather more distracted by his naughty greedy pet fire-lizard who was a much more vocal character. I went for a straight forward fighter, quite quiet natured and serious with a big huge hammer for squishing things!

I joined in for a bit, and then my tummy got so bad I had to go an lay down for a bit, and I did intend to go to sleep as that is often a good way of ignoring being in pain. However it just got worse, and I was on the verge of calling an ambulance, when suddenly it lessened off.

I went downstairs again and played a little longer, before finally having to go back to bed to sleep.

The next morning I woke up hoping that it would all be ok, but sadly it was hurting again and I realised I was going to have to go back to London to get some drugs to try and sort it out. I managed to stick it out for the morning and most of the afternoon, but then when we broke off playing to have a barbecue I decided that it was best I head up to London then so I didn't miss any, and I would try and get back as quickly as possible.

The tube ride back to London was very long and very painful. I'm, sure the other passengers must have thought I was having a baby or something given the grimaces I must have been pulling whilst clutching my tummy. When I finally got to London I got a taxi back from Marble Arch, marvelling briefly at the queues outside the newly opened Primark as we drove past.

When I got in I immediately shoved everything I could think would help down my tube, as well as taking as many painkillers as it was safe too in the hope it would work. I had the intention of letting the drugs kick in before heading back to Oxford, but it quickly became apparent that things were not getting better, and that as my body had been straining and in pain for the best part of 24 hours it was now pretty much exhausted.

Everything then seemed to spiral quite quickly.

I called one of my flatmates to see if she was in, as she knows how bad my tummy can hurt, but she was going out, so I didn't want to make a big fuss as I was still convincing myself at this point it was going to be ok.

I called Luke to let him know what was going on as he was down in Sussex, I told him it was probably all going to be fine.

It then hit me this really wasn't going to be fine at all, and that I needed an ambulance, and probably a surgeon and that I really should have admitted that quite some time ago.

I called the university as we aren't supposed to call an ambulance without asking, which seems very bizarre to me, and they weren't very helpful and didn't offer to send a first-aider which I thought was a bit shit, not that they could have done anything but that isn't really the point. I then called the ambulance and they told me they were on their way.

I then called Alex another one of my flatmates as he's quite sensible and I knew it wouldn't freak him out too much to suddenly be faced with me screaming in pain and getting bundled into an ambulance and having to face surgeons...which is what was going to clearly happen. I asked him if he was in and he wasn't, he asked why and I was going to say 'oh nothing' because I didn't want him to worry as he wasn't here. but I just kinda of cracked at that point and told him what was going on. He was, as I predicted, terribly sensible about it, and told me to call Rabia who was in, and that he would meet me at the hospital.

Rabia and Karolina came rushing down and did their best to look after me as we waited for the ambulance which in the end took nearly an hour to reach me in central London. I probably got over-worked up and made myself worse but by that point I was tired and scared and in a lot of pain and they should not have taken so bloody long to get there. I also got beyond the point of being able to talk to Luke because I was in too much pain, so Karolina had to speak to him and let him know what was going on. I felt awful for scaring him so much, but it was reassuring to know that no matter how long it took he was on his way.

The ambulance crew when they arrived were lovely, and apologised for taking so long. It was odd but I suppose understandable that I calmed down when they got here. I seem to have this mode of being helpful, cheerful and highly knowledgeable about my condition around medical staff that kicks in almost without fail, and the less they know about me the more I behave like that. It is probably a little mis-leading as to how I am actually feeling but never mind it seems to work.

They rushed me down to UCH and into A&E where they did their best to pull strings for me and get me into a bed rather than a corridor, aswell as getting a surgeon down to see me as quickly as possible. While we were still waiting Alex arrived. I felt a bit bad as he and Rabia have had a rather bad 'falling-out' and I didn't like being responsible for shoving them back in a room together, but figured they were both grown-up enough to deal with it. I also got Rabia to phone Bryan and tell him what was going on and that I wouldn't be back, very sweetly he told her that if they needed to speak to someone who knew my medical history that they could call him.

It was then a case of being put in a room, given an utterly pointless dose of paracetamol, and re-counting the freaking bloody obvious about three hundred times to various nurses, doctors and surgeons none of which had a clue what was really wrong with me or how to deal with it, even though I kept telling them!

The guys were all utterly fantastic and kept me talking so I didn't notice how much it was hurting, and so I didn't have time to brood over the possibility that I was going to need surgery which would probably kill me.

After a few hours of faffing about with nothing being done they finally decided it might be a good idea to give me some pain-killers and anti-sickness drugs, however it did involve the nurse having to throw away one batch of drugs that I'd already told them I was allergic to!

Everything after that goes rather soft focused and I don't really remember it as the drugs were pretty strong. I did tell them that I'd stop breathing enough when they gave it to me, yet still there seemed to be some surprise over that fact that my oxygen levels plummeted, blissfully though I didn't actually care about any of it any more as I was away with the fairies.

A few hours later I semi-came round and the surgeon asked me all the same questions again, even though most of the answers were written on a sheet for him that I prepared ages ago so that I didn't have to go through complex medical history whilst off my head on opiates, but never mind. Luke was in the building now anyway I could feel him.

It was no surprise at all when he appeared at the end of my bed, though it was very nice to see him again.He was glowing of course.

Then I was on the ward, and being sick, actually properly sick out of my stomach which I haven't done for a very long time, so that was quite exciting. Luke was sleeping next to me in the chair. When I stopped being sick he went home, but I kept waking up and seeing his echo there for hours afterwards.

Just as dawn was starting to break another doctor came to see me, she was worried about my chest and wanted to put me on IV's. I explained that wouldn't be necessary, but suggested she should call the Brompton anyway and ask what my sensitivities were. I also suggested that she ask how they would recommend dealing with a blockage. She ignored the latter of course, but happily announced I was sensitive to colomycin, which I could have told her anyway.

The next day Luke came with is friend Will, who had come to keep him calm on the mad train journey the night before. I didn't really have much to say, and was still feeling pretty trashy from the drugs, and like I'd been kicked a few times in the stomach.

Later I got moved into a side room which was nice and big and quiet. It was also nice to see they were being sensible about me and the 'infection risk' I pose!

All the gang came to see me, they were all a little shy at first and didn't seem to know what to say, but after a while it was ok, and we chatted normally.

That evening I watched 'Lost in Translation' it was pretty good, and I've wanted to see it for some time. It made me a little sad though, partly because Japan looks so cool and weird and I want to go there, and this latest episode was just more damming proof that I just can't do that sort of thing any more. More though because of the subject matter, it made me think of my sister and her friend a lot. Two people coming together and then never being able to follow it all through because it's just not possible because of all the other circumstances - it is a horribly sad thing to live or to watch.

I then watched 'A Clockwork Orange' because it's one of those films I felt I really ought to have seen, besides which I wasn't really sleepy and it was the only thing on. On reflection it probably wasn't the greatest film to be watching late at night whilst in an odd mood with lots of opiates and steroids in my system, but never mind...sex and violence always makes me think of Nick and having been convinced I was about to die again the night before it was kind of obvious that I would be thinking about him anyway, it made me text him though which was a good things as I probably should have done earlier.

After that I went to sleep.

The next morning I woke up to find my tube had disconnected in the night, so that the contents of my stomach had free-drained onto the bed, rather than into the bag, not very pleasant at all as it mostly consisted of cold wet sputum. In a very unimpressed and quite feral state I had retreated to the back corner of the room to watch the last of the sunrise and debate at what point I should sign myself out. The fact the surgeon couldn't be bothered to come in the room as it would have involved putting on a plastic apron did very little to improve my mood, though I was at least now allowed to drink...tea please!

As the day progressed I brightened up a little and by the time my flatmate Chitzi came to see me I was feeling decidedly perky. She stayed for ages and we chatted about tons of stuff so that was really nice.

In the afternoon Luke, Will and Abdul popped in. They very sweetly bought me some magazines to keep me occupied. They had been trying to fix Will's laptop and though they hadn't had much success it appeared they'd had fun trying!

That night was pretty long and awful. For some reason I suddenly started feeling very cold and shaky, given the IV fluids and my history I immediately assumed there was something wrong either with my blood pressure or my sugar levels, the latter being quite concerning as I was not in the mood to fall into some sort of hypo-glycemic coma through sheer stupidity.

I called the nurse and asked if she could do a set of ob's and get me a blanket, she said ok, and went off. I sat waiting quickly getting more cold and shakey whilst also starting to feel very sick, to the point I started retching. I called for the nurse again, getting quite concerned at this point that there was something really wrong. About fifteen minutes had gone by at this point, and I could hear them outside chatting at the nurses station, which really annoyed me as i was quite concerned. I was also frustrated that no one had been keeping much of an eye on my sugar levels even though I had repeatedly asked them too, and they had already dropped low on one occasion in the last 24 hours.

She eventually came back in to find me retching and shaking with cold, and rather than being 'oh my god what's wrong, let's do some obs' she started shouting at me saying 'why are you hyperventilating' to which I tried to explain I wasn't whilst shivering, retching, and being quite worried, and that I was jut really cold and could she please do my ob's because I was worried about my sugars and bp.

She then started shouting at me to get under the blankets and that was why I was cold, I was trying to but it was kind of hard whilst shaking, puking and being shouted at, whilst also trying to explain that I doubted I would suddenly get cold for no reason and that I thought there was something really wrong. She then started going that I knew I had to keep myself warm and that it was part of my condition, to which I was thinking 'It's got nothing to do with my condition' and 'you don't know the first thing about my condition'.

I am also notoriously bad at being told off, and it really upsets me, especially when I try so hard to be especially helpful and patient when I'm around people who don't know how to look after me. For instance even though the ambulance crew took an hour to reach me I never complained to them once. But she just kept shouting and I didn't know what to do, so in the end giving up on being polite I was just like 'what the fuck, why are you shouting at me?' to which she shouted back even louder 'do you talk to me like that' in a way that implied I'd called her a bad name or something. Eventually thankfully she left and a few minutes later another nurse came in and did my ob's.

I couldn't even look at her, I just sat there crying my eyes out.

I was so upset, and so so shocked, i just couldn't understand why she was shouting at me when I hadn't done anything wrong and was just asking for help.

I called Luke because I didn't know what else to do and I wanted to hear his voice to calm me down. He was really sweet and wanted to come down, even though it was too late at night and they wouldn't have let him in. Mostly though i just felt bad for calling him when there was nothing he could do for the second time in as many days, so it didn't actually help that much.

I sat there for a long time debating whether to just sign myself out as they didn't actually have a fucking clue what they were doing anyway, and they weren't giving me the drugs I wanted because they don't understand how CF-related intestine blockages work, yet refuse to listen to my perfectly competent explanation of them, and how to deal with them.

I also did not want to be in the same building as that nurse, or in a place that would have staff that would treat their vulnerable patients in that fashion.

However I just kept saying to myself 'reflect' in true PPD fashion. I was trying to figure out why I was reacting so strongly and what the best course of action would actually be, irrelevant of what I felt like doing. I had to bear in mind that this hospital, are when I'm going to come in emergencies irrelevant of whether they know what to do or not, ambulances cannot go to the Brompton, so it would probably be best not alienate them and piss them all off. Storming out of hospital at eleven o'clock at night just because you had a row with an unprofessional nurse is also just a bit immature. I also had to admit that I was probably over-reacting because I was over-tired and it had been too many days of pain and scariness.

However I didn't really feel any better for having come to such an enlightened point of view and so I called my friend Dan, who is the only real world person I know with CF. He is also probably the only person I can call at midnight in tears crying about CF and have them have a hope of understanding what I mean. I always do it, and he always there. Truly awesome friend, I love him very much.

I guess this was just the first time I've really had this acute scary situation happen now I'm totally independent. The first time it happened I was with Bryan, the second I was with my mum, but this time I had to make all the decisions, and there wasn't really anyone around who knew how to help. Thats a very scary level of responsibility that it could only hit me I now have in that sort of moment.

I really don't know how I do this sometimes, and I have to pretend I can so that everyone else doesn't worry too much. I wish I didn't crack under all the strain but every so often I do. That was utterly one of those moments.

Kind of hurtful and upsetting that the people I want then aren't the ones close to me like Luke, who it feels like it should be, but I want other people who are further away, who I'm less scared of hurting.

The next day I decided I was leaving, and convinced the surgeon with very little difficulty that he had no idea what he was doing and that it was best to let me tootle off the the Brompton in such a fashion that he was convinced he came up with the idea. I also got to eat something which was a relief after days of nothing.

I called Luke to ask him to help me come home as I had a heavy bag, and I didn't think the hospital would let me go unless it was with someone. He arrived in a vile mood, still mostly asleep and puffed up to the eye-balls with hay-fever and I got the distinct impression I'd annoyed him. Then I had strict words with myself to be more grateful and to just be relieved to be going home.

Yay - survived it all again.

Ignore the bright edges, busy roads and high buildings.

Somewhere Else

2007-04-18T00:11:00.000+01:00

So this is my album review, and as you can to some degree expect it is not really a music review at all, it is a review of how this album made me feel, and what it made me think of, and for that reason alone it is horribly long winded, never really gets to the point, but yet remains an important exploration of how I feel about me, and my life how it is right now, with alot of referencing to what has come before with the odd mention of obsessive Marillion love along the way...enjoy!!

The new Marillion album 'Somewhere Else' was released at the start of this month. It may sound rather odd, just some band and a new album, kind of exciting, but not earth-shattering.

Then again it is Marillion, and after thirteen years of following them around the world they have become a bit more to me than just a band, and the new album release more than just a good excuse to go down into town. (Not that you can really ever buy their album down at HMV, but you get the drift)

With sometimes years between albums, whenever one comes out it is rather momentous, as I know, that no matter what, it will inevitably become part of the fabric of the rest of my life, and I will never quite look at things the same way again.

I had expected the album to be different. Last year when I first left my husband Bryan, I had this whole massive 'hurrah I'm free look at the sparkly world' type high, and I knew that to some extent the lead singer h was going through a similar thing, I was really looking forward to the album sound-tracking my new life, in the same way all the other albums have.

The the day I got the album I had been at my sisters, and her friend who she lives with put it on my i-pod for me. My beautiful sister is very unhappy at the moment, for reasons I won't go into here, but I really understood how she felt to a large extent. It reminded me of things I try and forget about Bryan and all the very real love connected to him.

....anyway I listened to the album on the train, which was not the greatest place as there was alot of surrounding noise but my initial reaction was one of horror.

All the songs sounded really samey, alot of them were messy, the vocals were terrible and the lyrics repetitive and shit. I think my precise description at the time was 'It sounds like a bad Radiohead album, after the highs of Ok Computer when they just descended into whining over noise so over-experimental it couldn't be called music'

However I did not utterly despair, as I often hate the new Marillion album, and usually have to listen to it some number of times before I 'get it'. I don't know what that says about them as a band, that I have to 'brainwash' myself into loving something, or that their music is just complex and takes time to understand...being utterly biased I shall of course plumb for the latter explanation.

Determined to 'brainwash' myself, and give the album a fair chance I listened to it again later that night as I did my physio, on headphones in a quiet dark room - there are really two ideal places to hear Marillion, this being one, the other being in the front row of their gigs whilst jumping and singing my heart out!

As I sat there listening carefully to the words and all the many intricate layers of sound, along with all the memories of the day in my mind, along with all the other older memories I had thought of, along with on-running concerns I have about my head and heart and the way the work the whole point of the album hit me, and it was all I could do to not cry.

I try endlessly to explain Marillion and why I am so obsessive about them, and yet I constantly fail to articulate it all and just sound like a crazy loon!

This band is about more than music, it's about more than countless adventures around the world and all the friends from the front row so precious they are like family, this music sounds like how I feel, really deep down inside my heart, and inside my soul.

It manages to encompass so many tangled threads of memory and emotion, and draw them together into a single coherent whole, giving a richness and level of depth and colour that I just can't seem to come up with on my own in my head. It doesn't solve anything I suppose but just the recognition that it's there and that's how I feel somehow makes it all easier to deal with.

I shall deal with what I see to be the two threads of the album separately...

Firstly - We Should ALL be good and save the planet!

This is something I know the band, particularly h, are passionate about and was expecting some sort of statement about it all. The fact they are all pretty much in their fifties and looking at the legacy they are leaving to their children in terms of the planet must be something that is on their minds to some degree.

This also couples with the general media shift at the moment, I don't watch much TV or read the newspapers either, but yet I have noticed of late there has been a significant push to change the world and start making some actual changes to the way we do stuff, to make our societies more sustainable.

I am under few positive illusions as to why this is. It looks good for business and political parties and for the most part I have little hope that it will last or that the 'changes' being made are little more than lip-service to the true depth of the problem, however I would rather this than nothing.

The constant tangle of despair of what we have done to the world, and how we are going to fix it, and all the falseness surrounding the issue, is, I feel, captured. Marillion know they have a large and utterly adoring fan-base, I can very easily see how they feel it is important to use that power of voice to try and achieve something more constructive than getting their album in the top 10 and for that I have the deepest respect for them.

It may have all been said before, it may be cheesy, but SO what??!! Good on them for standing up and saying it anyway, because it needs to be said.

I think the best quote on the matter from the album would have to be 'Give me a smile, hold out your hand, I don't want your money, I don't want your land. I want you to wake up and do something strange, I want you to wake up and feel someone else's pain'

What an utterly fantastic an idea, should be the band aid theme-tune!!

Secondly - How the hell you get over a marriage and it's collapse.

It is important to note at the start the way the two themes intertwine, as they both involve a lot of looking at the world, and the state of it, in horror. Looking at the macro-cosom and the micro-cosom I guess.

I am probably being terribly naive, and doing the typical 'no one else could possibly be hurting as much as me' type reaction, but I do genuinely think that getting over a marriage is a very hard thing to do.

To a very large extent I'm fine, and that it is probably easier for me than for Bryan as I was the one who chose to leave. I don't want him back, and I'm not angry at him. I'm probably one of the most unusual ex-partners ever in that I still love him and care about him very much, and I want nothing more than for him to be utterly happy in everything he does, and would love to see him with some new girlie who made him really happy.

However all that said there is a part of me that will always feel sad about the fact it didn't work out. Though I'm happier now, though I know that it was not going to work and that we were just destroying each other, there was ALOT of love there. I did NOT take my marriage vows lightly, and I broke them even less lightly. I swore to something, and I bound my entire being to that with white gold and love, and yet when it came to it I couldn't hold to it. Forever I will be disappointed in myself for that utter failure of myself.

Not long after I left Bryan I wrote him a letter. I wrote it with the intent that I would keep in a box for a month, and then if I still felt the same I would send it to him. I never actually did as it seemed like a bad idea as it would probably have just upset him, and it seemed like something that would ease my own conscious more than it would do anything for him. But in there I said that I doubted I would ever love anyone again, or words to that effect.

I often do this, I write things, and then it's only in retrospect I realise quite how true they actually are.

A big part of being able to leave Bryan, and get over it all hinged on me being a single entity and the strength I found in being on my own. I didn't actually want a boyfriend, in alot of ways I am still not convinced I'm at the point where I do want one, despite actually having one, and not wanting to be without him, if that makes any sense at all!

It is very difficult.

I'm not a pretentious person who likes to have barriers and walls and not get over things, or not let people in. I am hopelessly naive and childish and I believe in poetic love, and think that people should love, and that you should never deny that.

I firmly believe you should retain innocence and not get jaded by the bad things that happen, and that you should still uphold the original pure ideal you had when you were little, long before you hit the real world.

But now I'm here, now I'm living it, it is harder said than done, and that letter comes back to haunt me.

I cannot describe how it felt to marry another person adequately enough to then cover what it means to have broken that. I stood in that room and I swore it, I have never meant anything more in my whole life, and if for some obscure reason I had to do it all again tomorrow in order to make the fact I took the original vow valid I would without hesitation.

I really meant it, I wanted that life with Bryan, in sickness, health, poorness, wealth, till death do us part. To this day I just find it so heart-breakingly sad that neither of us could be enough to each other to hold to such a high ideal. I have moved on now, I live in a different world in a different life, but it doesn't detract in anyway that not very long at all ago I swore my soul to something else entirely.

So inevitably as a result I find it quite hard to believe in love now irrelevant of how real and how deep it feels, because part of me always says 'well yes but you said that last time Toria'. It all jars rather unpleasantly with my ideals.

I don't like the way I doubt myself, and the way I feel about Luke, it makes me feel very sad and horribly guilty. I know it is terribly silly, I love Luke, I love him in an utterly different way to Bryan. I know how special Luke is, and in many ways I feel closer to him, and more like a wife to him than I ever did to Bryan.

Luke and I are meant to be together, we have been before in another time and space before the world began, it may sound silly, and it may well be my over active imagination but I honestly believe that is the case and that for whatever reason I have found him again. When we first started seeing each other I cried so much with the immense relief that I had found him again. Like my little soul had been missing him for all the wide eons of time since I last was with him.

It is the reason I refuse to let Luke go, despite the fact that I'm probably not quite ready for him. I refuse to let what has happened to get in the way of my life now, I don't pretend it doesn't affect it, but I will not let it change the way I behave and over-rule what I want in the here and now.

I want Luke more than anything I love him more than I can express and he makes me incredibly happy and gives me more support and love than I think anyone ever has before in my life.

But forever?

I have come to the conclusion that until I can be more sensible I shall live with the attitude that forever is as long as this life lasts. It isn't perfect, I wish I had more faith in myself and love, but I realise it is not something I can force, and that it is something that will come back to me in time because I'm the sort of person that believes in it enough to make it happen.

....so circling to the point... this is what Somewhere Else sounds like, this hopeless tangled mess of love and guilt and disappointment and lost faith that you are trying to regain, this is what this album FEELS like.

To me the questionable chords and vocals, repetitive lyrics and themes echo it all, that is just what it is like inside my head, and inside my heart. I want it to be something better, I want it all to be neater, but that just isn't how it is, this is the core-truth of it all, and for that sole reason this album has become one of my very favourites.

It is very easy for me to over-identify with the protagonist of the album, and assume it is all h and the rest of the band just saying what they feel about themselves and their lives poetically, and to a large extent I think what makes Marillion so fantastic is that there isn't really a protagonist at all.
It is just honest, they serve up 'this is my life, this is how it feels' and all around the world a big nutty bunch of us have gone 'yeah holy-crap I feel just like that too!' and despite sounding very little like any other of their albums, once again the fantastic thing that makes Marillion what they are has shone through.

An ending... I need to come up with one of those before you die of horrid boredom, if you haven't already...I shall do the cheesy thing, and do the Somewhere Else ending.. you want my album review in short, this is it in a single quote...

'What I have here in my hand
Is like knowing but deeper
It’s why I am here
It’s why I am here'

So this would be the start...

2007-04-13T10:18:00.000+01:00

I don't really know how this blog is going to turn out, I had another one a while ago that began as a tour-diary plotting my adventures as I skipped about the globe following my beloved bands, but then it descended into the odd update usually posted when I felt particularly strongly about some event or another.

I like having diaries, I try and keep one, though I start off well I then don't find the time to write them. Though I have decided that having an online one where I can type it in, and it will keep it for me in a nice ordered fashion may help matters. I have a tendency to not write anything for a while, and then write pages of stuff, which my little paper diary isn't really suitable for, so hopefully this will provide a better space for that. It will also be more legible!!

To some extent this is an homage to my friends Oli and Emily who both have blogs which I have found to be terrifying, amusing and a source of more strength than I can even begin to quantify. They both plot their end-stage Cystic Fibrosis journeys towards heart-lung transplants, and in Emily's case the life that follows one. The amount of times I have sat reading them and read my own frustrations before me, or been forced to admit a truth I was otherwise avoiding doesn't bare counting. I have come to the conclusion that it would be helpful to me to go through that process myself rather than extrapolating from theirs.

This element of self support is a continuing theme. I often find it helpful to read stuff written some time ago at a point when I was feeling strong and together, it reminds me what I am capable of, and stops me sinking into hopeless self pity, or just acts as a venting platform so I can drop the issue and move on.

In-fact the title of this blog comes from something I wrote once, I have referred to it so often now that I forget where I originally wrote it, but I think it first appeared in a letter I wrote to my dear friend h explaining everything that had been going on in my world, most notably its recent collapse, but I had come through it, and all the healing from it, with the strong determined attitude that I continue to uphold, this being...

...I was not made for one person, nor one life and I am capable of anything.

Oslo the LONG Version - Day III

2006-03-26T17:15:00.001+01:00

March 26^th 2006

Up a little too early, about 6.30, but I figured that I may as well get going and then I wouldn’t need to panic about being late. I shoved all my stuff in my bag and arranged the things I may need near the top. Clearly still in my very sensible and organized traveler mode. I checked out the hotel with no effort and walked down to central Oslo with the intention of getting a bus from the centre to the bus station as I wasn’t convinced I would find it again.

One last walk through the park, trying to absorb as much of it as I could and stuff it into my head do that I would be able to recall all of the stillness and the ice and the beauty of it when I was home. I was also quite shattered and kept having to stop and rest.

I got back to the central square, one last look around it, one last stroke across all the memories that were formed here and around here. Then focus on getting home.

It was too early in the morning for the buses and trams to be running, and so I wouldn’t be able to catch one to the bus station. I was going to have to figure it out on my own. Sensibly I thought that my map may have something as touristy as the bus station marked on it, sadly however that was clearly far too obvious a thing to mark on there. Zen navigation it would have to be then!

Wander wander wander…ooo woolly jumpers…that green frog one is still winning the ‘most hideous’ competition…yeah it should be kind of this way… the pavements in Oslo are odd, they look all broken up, I wonder if that is the freeze thaw erosion, or if they are like that because the broken surface stops sheet ice forming… Ice and pavement management in the CBD wow that would be a fascinating project… ooo tram lines I bet if you stuck your tongue on the metal it would be cold enough to stick…yeah this way I suppose…wow look at all that water melting through the slush, it makes little sparkly cave structures, why little snow dragons and ice fairies could live there… ooo pretty blue tiles along the walls… they are familiar…oh wow that would be the bus station then woot! Go Toria!! And with half an hour to spare haha how good am I?!

I bought lots of water and some chocolate because the only other things they were selling were rather nasty plastic looking hotdogs. I sat munching hungrily as this was the first thing I’d eaten since the salad back in Stanstead airport. I was going to save the Snickers bar for later, but decided that was a silly idea and that I wanted to eat it now.

The silver bus pulled up and I got on, he didn’t say anything about putting my bag under the bus, so I just took it on with me. I sat at the back as that was where there was most room. There were too many people to be able to fit everyone on, so I was glad I’d got there early as I couldn’t really cope with finding an alternative route. I do hope those people managed to go on the train or something and get there in time for their flights, on the basis they didn’t seem too upset at the time I guess they had another plan.

I decided to listen to the gig from the night before, though had to spend nearly half an hour fast-forwarding through all the pre-gig chat. Not helped by the fact I kept slipping so it would go to the end of the ‘track’ and I’d have to start all over again! Argh! Way too tired to be patient enough for this!

We went to the airport a quick route as the bus was too full already for it to be worth going the long route via all the stops. The journey was noticeably shorter and I didn’t fall asleep this time. I did have to resist the urge to wave goodbye to Oslo as we left the last bits of the trailing docks behind us. I was so sad that I had to leave, I wanted to stay. I liked who I was here.

That sounds odd I know, but with everything that has happened surrounding me leaving Bryan it’s been a while since I felt entirely together and myself. But here a lot of the pieces had come together. There is this person that I see in myself and I strive to be like that always. It’s very hard to define in words but it is the person I regard myself to be at heart.

In short it’s the kind of person I am when I’m with Adam or Jonathon. The comfortable mix of serious, intelligent, thoughtful and observant laid alongside confident, funny, caring, sexy, strong and together all wrapped up in this sparkly excitable magical imaginative way of perceiving and understanding everything.

I’d achieved that here and it was nice to remember how it feels inside when I’m like that. It is a very comfortable and perfect way to feel. That is how I am meant to be, that is how I am when I’m happy.

I lay back in the seat of the coach and let the gig wash over me, it was a decent recording, not bad for a first attempt, and such a precious little thing to own. Going to gigs is almost always part of a whole big adventure, so they aren’t just music they are a soundtrack to the wider tapestry of life that surround them, I suppose that’s why I like going so much.

The bus got to the airport quite early, so I was sat there for quite a long time, I just sleepily sat listening to the disc and trying to keep awake. There was a group of American lads heading back to the UK. I followed a little of their conversation, they had been up in the mountains and were all going over their adventures that largely seemed to involve trying to snowboard and all the inevitable falling over that goes along with it. It was really sweet.

Then it was time to queue up, I sleepily stood there, there was a lady with a very big bright green bag in front of me and a girl with a set of skis taped up with brown parcel tape, though she also had a flowery strap round them, very pretty. All checked in I had a quick look at the little shop, I had thought about buying Alex a troll keyring as they were scary and hideous and he would probably love it! But then I got distracted by these amazing posters of Norway that they had. There was one of the northern lights green and rippling in the night sky, I had hoped I would have been far enough north to have seen them but I hadn’t been, so this made a good substitute!

Then over to the x-ray machine, it did make me laugh the comparison between the big fenced off section for this that there is as Stanstead, compared to here where you just kind of wandered up to a glass doorway and you were there. Remembering to shove my mobile in the box this time I wandered through the metal detector, and set it off! It was my belt that had tripped it. In retrospect it is quite worrying that my belt didn’t trigger the one in the UK, as it does actually have an awful lot of metal along it!

Then through into duty free, which it has to be said is a lot less nauseating when opposite is a massive wall of glass looking onto a forest draped in snow…add in Steve Hogarth beautifully and evocatively singing ‘I still dream, of Arganon’ and believe me you are sorted :o)

It suddenly occurred to me that I hadn’t bought any ‘Smile’ pronounced smeel, very tempting to do that in a Gollum voice hehe! It is a type of chocolate that all the boys had told me I would have to try, along with brown cheese which is apparently traditional Norwegian food. Lucy Jordache (Marillion’s manager/ PR person/ I have no idea what!) got totally addicted to it last time she was over, the idea of that along with all the boys rolling their eyes at the cliché girl, made me want to try it! So I bought that and shoved it in my bag so I wouldn’t eat it till I got home, and so I could share it with everyone.

I then wandered up and sat on the floor by passport control waiting for it to open- hehe teeny tiny airport! When it did I queued with everyone, and then as I went through I asked the man if he could stamp my passport for me. Technically now we are in chummy border free Europe he didn’t need to, but I think that is incredibly boring, and that actually the whole point of a passport (aside from giving away your origin when you play the guess the nationality game) is to collect stamps from all the wonderful places you visit! This rather spiffing chap with sparkly blue eyes (who I think rather viewed me the way he probably does his grandchildren) seemed to agree and gleefully stamped my passport, still brandishing his stamper he asked if one was enough, giggling I said thank you one was just perfect! At the same time thinking I will get a second when I come back!

Then a little wait, more marveling of the gorgeous stylish clean airport, wistfully looking out on the dark heavy snow laden sky and wishing I didn’t have to go. Then boarding, I was glad there wasn’t a connecting bridge this time, it gave me a last few precious moments in the air. I stood at the foot of the steps up to the aircraft just letting the cold breeze run through my hair, and just breathing. I wanted to be able to take it home with me, somehow bottle this air so I could breathe it all the time.

Up the steps, stood at the top of them, the poetry of repetition drawing a suitable close to the adventure. I can’t leave this air, I want it to feel like this when I breathe all the time, its been too long since it was this easy to breathe, and since I felt like my lungs actually worked, and them having air in them was a pretty thing and not just hard. So so hard to tear myself away from it. One last breath, sharp and crystal in my lungs, pure cold oxygen in my blood. Wow. I will have back soon. I will come back.

Into the aircraft and down the cramped isle into a window seat! Definitely having a window seat this time! I stayed awake for take off, and kept my face pressed against the glass so that I could drink in every last second of Norway and all her snow. Then up and into the dark grey clouds which swirled misty around us. I fell asleep before we broke into the blue sky above.

My sleep was patchy and broken but distracted me from feeling rough in the nasty pressurized airless cabin. I finished the gig, and decided that because Steve had been talking about it I wanted to listen to ‘This Strange Engine’ but I fell asleep half way through it. Then I woke up again and we were over London and nearly home.

I felt really quite unwell when I got off the plane, and my bag was very heavy, and it was a long walk down to the terminal building. I did think that I may actually collapse which would have been rather annoying, but thankfully I didn’t. I got to passport control where there was a massive queue, this time I did decide to pull the sickly card on the basis I was quite sickly.

The people at the front were a bit miffed with me, but when I, rather breathlessly, explained I wasn’t well, they looked horribly guilty and apologized. I said it was OK they weren’t to know. They had been on holiday in Italy and had, had a lovely time, which thought was very sweet.

Then through nothing to declare, singing the obligatory ‘Nothing To Declare’ song in my head. I always find this bit a little odd, after all the checks, and gates and traveling you are suddenly through the last barrier and just left to your own devices in whichever country it is you have just entered. I always have the unpleasant sensation that I am miling like a sheep!

Down to the coach terminal. I walked outside into the February drizzle, and I could hardly breathe. It was really warm, over sixteen degrees, and the air was thick and muggy, it was like breathing treacle. Usually England isn’t quite this bad, and it was just an unfortunate coincidence that it was horrifically muggy and humid, but it did leave me with the overwhelming urge to just turn around and find my way back to Norway by the quickest possible route.

The bus wasn’t due in for nearly an hour, so I went to the little waiting to room. It was quite possibly the most dirty dingy little place I have ever seen, I was upset to think that on the frontier where people enter our country this is one of the first impressions they must get of us. Who ever manages that place should be utterly ashamed of themselves.

While I was waiting I called my mummy and told her what time the bus would get back to Luton and to ask if she would mind picking me up. I had meant to save my adventures till I got home, but I couldn’t wait so I told her then! Besides which I know it annoys my dad when I get excited and talk too loud, so if I told her now it would be out my system before I got home.

Eventually the bus came and I got on, I fell asleep quickly and didn’t wake up till we got to Luton. It was weird; I had got so used to going through airport procedure I felt like I should have to show someone my passport before I got off the bus.

Then after a little while Mummy and Alex arrived and took me home.

Mmm definitely want to go back – Norway beautiful magical place I’m in love :o)