Wednesday, 30 July 2008

Shopping and Pie

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)

Monday, 28 July 2008

Annual Review

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!

Sunday, 27 July 2008

Greatham Family Picnic!

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)

Friday, 25 July 2008


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.

Wednesday, 23 July 2008

Spring...well Summer Clean!

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)

Tuesday, 22 July 2008

A Lovely Family Day

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!

Monday, 21 July 2008


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!!!!

Monday, 14 July 2008

Bertie-dogsitting and Grand Reunions

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 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!!

Thursday, 10 July 2008

Hayfever Trials and the Listening Post

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.


"Thank God For The Internet"

Monday, 7 July 2008

Just a few photos!

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!

Friday, 4 July 2008

Hospital Admission

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