Clinical Justification

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

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!

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!

Poppy Puppy Sitting

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 Bird Has Landed!!!

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.

Munchausen by Internet

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

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

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...

... 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!

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!

Postpals

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!!!!

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

Health Visitors....

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.

Totally Retro Steak & Ale Pie

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!)

The Week Of Sunshine

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)

Been a while...

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)

A Response To The Wordpress

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

Long Weekend

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.