Once again, I have been exceptionally terrible and failed to blog recently - though I shouldnt be suprprised, its a fairly expected occourance now and one which I do not appear to fail to conform to. However, once again I am sat at my laptop struggling to come up with something remotely interesting to say, or even come up with something that I can tell you about in a way which is eloquent in any fashion.

This week I received a phone call from a member of staff at Asthma UK giving me some information about their various volunteer roles. One of which is a role requiring me to share my experiences of living with asthma, speaking to groups about the work AUK does and collecting cheques and expressing thanks to donors. I had a most pleasant conversation, and was prompted to think about how I would put my experiences into words, how I would adequately express the impact it has on my life and how, if at all the work of AUK has benefited me. So considering that I am struggling to produce a even slightly interesting post, I have decided that I will have a go at explaining to anyone who has persevered this far the above, and I apologise most propitiously to anyone who is unfortunate enough to attend one of the events at which I am speaking and will therefore hear this again.

I guess I could begin by explaining how people react when they hear about my experiences and how I feel about them all, because there is a possibility that you may react in a similar way. People tend to look shocked when I tell them that being sick doesn't scare me any more, that its just a part of my life now. They look at me like I am mad, either that or they look at me in a way which clearly shows that they feel sorry for me. But they needn't, my life is rich in so many ways, and anything that I lack with regards to my health, is compensated for many times over. However telling you this has caused me to think and question myself, asking myself if anything about this scares me. I suppose the most honest answer that I would give would be that I fear the way this has become second nature to me, normal almost and how I cant honestly imagine my life panning out in any other way. I guess I have in some way lost my identity and taken on a new one, one of a completely different person. I don't even think twice about taking handfuls of tablets, needles don't phase me any more and in A&E the majority of the doctors seam to know me by name, greet me like an old friend and treat me like one.   

If I could have sat down five years ago and made a prediction for the last half decade, I would never have predicted this, but you know what? I wouldn't change any of it, not in a million years, not if I was offered all the worlds riches. This doesn't mean that I don't want to get better, quite the opposite is true in fact. I long to be able to get up in the morning and decide that I am going to go shopping or swimming without having to worry about medication and if I will be able to manage the day out, without having t figure out how my body will cope and if I am willing to risk getting sick for it. I want to be able to go to the pub, dance until 3am and then attempt to stumble silently through the door so that my mum doesn't hear me and tell me off for waking her up. I want to be young and crazy, do a normal 20 year old type thing, have a hangover the next day and be told that its all self inflicted, I want to cringe when people tell me about the silly things I said or did.

However, despite all of these wishes and longing everything i have been through has taught me just what is important in life, what should never be sacrificed, and because of that I would change anything. You learn who your real friends are when you are sick, who really cares for you. Your friends become spilt into two, those who make excuses not to visit because hospitals make them uncomfortable and those who travel for hours to see you or cancel work so that you are not alone.

I have met people who know what asthma can do to a persons life. There are now amazing individuals in my world that can honestly say 'I know how you feel.' and can laugh through the bad times and celebrate the good. They have taught me that its okay to be upset sometimes, and ask 'Why me?', but that the most important thing is just getting up and going on, accepting that this does not have to define or break me and that I don't have to face everything or indeed anything alone.

I have met people who are much, much sicker than me - dying from the effects that asthma has had on their body. I have met people who are were I am now, for whom things have for better and can offer me advice and encouragement, remind me that it can all change - this isn't it. I have also been able to help others, say 'I know how you feel' also and help them laugh through the bad times, hold their hand when everything gets too much and help them forget for a while.

I have become a much more compassionate person, and I have learnt to see the beauty in every dark, dull day - and smile through the pain that it may bring. I have learnt to live every day with a positive outlook and take on every challenge with a smile. But most of al I can say that I will never take another breath for granted, I will never fail to appreciate moments of good health and happiness or forget those who also struggle without them.

I find myself battling to remain sympathetic when people complain about having to have one blood test, a cold or a twisted ankle. It makes me wish that a cold was the least of my worries, and that a cold was just a cold to me. I know that a common cold cold land me in ITU - it has in the not so distant past, that a sickness bug could cause me to go into adrenal crisis or that any attack could be the one that takes my life. But if anything it has made me appreciate every day, hour, minute, second of my life and hold onto all the good that is in it.

But most of all I have realised that people just don't seam to realise how lucky they are, how they should cherish every last scrap of health that they own and never take it for granted. Its hard to truly appreciate something though, until you no longer have it.

I can honestly say that I have forgotten just about everything that has happened in the space of time between my last post and this. Its like when someone comes up to you and asks you a really easy question, but when your on the spot, the answer disappears into the recesses of your mind, only to emerge when the need for the answer has dispersed. Knowing me, chances are as soon as I hit publish, a whole load of important events will come to mind and I will kick myself for not remembering them in time to come up with some sort of artistic retelling. I'm currently struggling to stay awake, after every word I type, I can feel a blanket of tiredness covering me over and my eyelids desperately fighting against my determination to stay awake. One more hour and then rest, one more hour and I can give up the battle with tiredness. So it's time to stop typing and start engaging with an activity that will keep me awake! Farewell!

It's not been that long since I last updated - but quite a lot as happened in that short period of time. Where to start? My first year at university is officially over! Well I say over, I have a few pieces of work and an exam that need handing in/sitting, which I should have done by now but I had to get extensions for. So once they are handed in, that's it! One year down, two to go! I am hoping for a slightly less eventful second year though, and hopefully one that will reduce my stress levels.... Though saying that, I think I am the happiest I've ever been whilst in education, UCS was definitely the right choice for me. Other people can turn their nose up, and say that I'm going to a second rate uni, or taking the easy option by living at home, but I had to make the decison that I could live with best, as this was was definitely the best choice.

Since I last blogged dad has made amazing progress. He took his first steps the other day, and can now walk around to the other side of the bed, he was so happy when he told me, his face lit up. He has been out of the house aswell. Going into town in his wheelchair, going out for coffee, sitting in the garden - its all been really good for him, and he's much brighter for it, I'm starting to see a bit of my old dad shining through again, and it's amazing. The other day he even scooted around in his chair, made my step mum a cuppa and did some dusting! Wont be long before he's out mowing the lawn and washing his car! The best thing has to be that he went around to the residential home my step mum works at for his first proper bath since the accident, apparently the old people didn't want him to leave, he obviously went down a storm!

Rather annoyingly so I managed to land myself in hospital since my last blog, and it was a bit of a roller ouster admission actually. I went in not really expecting to be in too long, I had the feeling that after a good dose of mag and a short stint on amino I'd be out, but it didn't quite go to plan! I hate going through A&E, even at 4am when it was deathly quiet they manage to seriously overlook me. I arrived wheezing, unable to speak more than a couple of words and handed the triage nurse my EC information... She looked at it, stuck a Sats probe on my finger, saw it was 96% and sat me in the waiting room, even though my EC info warns them about that. Five minutes later another nurse spotted me, took me through to majors and actually got a doctor to listen to my chest, which despite the fact my Sats were still good was pretty much silent.

From then it was all go, I went from majors to resus, where I was drugged up and informed my C02 and Lactate levels were up and sent to ITU, where I spent about four days on a mix of amino, random doses of mag, CPAP and 02 among other things. I then had the relief of being moved to a ward for two nights, but then begain scaring too many consultants with my nighttime antics and got sent back to ITU. Bloody hell some of those ITU nurses are grumpy cows, good job most of their patients are vented cause they would have been murdered by now if not!

I am home now though, and so so pleased to be! I am going to stay with my wonderful friend florence for a couple of nights tomorrow, and we have made some plans to go to the beach and maybe the lido in Cambridge which will be lovely, especially as the weather is so good at the moment. I am a tad worried though, seams like since my last admission I've been desaturating when moving around, which is something that's not normally an issue by now. I often need 02 when I'm in so that I can pop to the shop but that requirement normally goes off before I'm discharged, and I wasn't really off it before they let me home. Which means tomorrow I have to ring my resp nurse and explain the whole thing to her, and hope she comes up with a soloution which doesn't involve admission or more steroids!

Anyway, I'm off now. I'm feeling a bit sick, which may be due to a dodgy burger, but I'm hoping not! Maybe if I have a sleep it will go away!

Much love, X

Sometimes life is good, and it hands you opportunities and abilities that you could never have dreamed you would have. But sometimes life isnt, it takes away those opportunities and abilities and leaves you wondering 'what next?'. But through it all, the good and the bad it is important to remember what you did have, and what you can have again - and to hold your head up high and carry on.

The past month or so has been a roller coaster. Everything has been so up in the air and manic, sometimes it's hard to know if I should be happy things are getting better, or sad because things are getting worse. It's so easy to sit outside of a situation looking in, and make judgements. It's so much harder to carry through any judgements you might have made when it's you in the driving seat - and I am learning that now.

I always thought after my dads accident that I would be forever happy that he came through it alive, and that he can carry on, and that through all the crap we had become closer. But right now I am struggling to think that way. Of course I am happy he's alive, but when I see him in pain and in a situation which means he will be suffering for so long I struggle to remain hopeful and jolly. But I must, the mask must go on and I must put on a happy face and keep going no matter what I really feel. What right do I have to be so upset when it's not even me that's suffering? If this is what it's like for me, what must he be feeling, I can come home, put on some loud music and attempt to drown out the thoughts, imagine that none of this has happened - he can't. He has to live with the consequences of that day for the rest of his life and there is no escape. I know he is lucky to be here, he will walk again, he has not been unfortunate enough to have suffer any sort of brain injury and he can have a life. But it's not HIS life, it's not the life that he is used too and the life he deserves.

But I need to get over that, and be strong for him when he can't be for himself. I've also had the added crap of being in hospital myself. I was doing so well, and had managed to sort myself out into a routine and avoid anything that might set me off. After having had admissions in November, December and January I managed to stay out for the whole of Feburary and March. I was so, so pleased and I was starting to relax and get back into the swing of things with uni and lowering my steriod dosage, but then it all went tits up, excuse my language, and I ended up back in hospital. So now I am back to having to lower my steroids slowly and spending time figuring out if I am actually well enough to do half of the things that I want to do.

 Luckily the weird fibromyalgia/ME like symptoms seam to be easing off. I am still having to take painkillers regularly, but I am not in as much pain as I was before, where I was counting down the minutes until my next dose. I am also a lot more mobile and unless I am going somewhere that I know I am going to be walking lots I can manage without my crutch. Though thanks to my somewhat rebellious lungs I am having to balance my asthma with the pain. I am also getting a lot better with the fatigue side of things, and I am able to do most things as long as I balance those with rest well enough. I tend to spend most of my days off in bed, and have to rest a lot once uni is finished, but I am coping a lot better. Fingers crossed it stays that way, and it doesn't get worse again. However, the fact that I am writing this at 4am also shows that I am struggling to sleep at the moment. Most probably because of the sheer amount of crap I seam to have running through my mind most of the time! Though I am beginning to feel rather sleepy, and for that reason I am going to stop writing and see if I can trick my body into allowing me some sleep.

 Anyway. For anyone who is reading this, I hope you are well and that you are not bored of my ramblings by now, take care, much love - Kirsty xx

It's been about three weeks since I last updated you guys, and what a few weeks it has been. Most definitely the past weeks will never be forgotten and to be honest I hope I never do forget them.

I will hold my hands up and say that I have been a terrible daughter. I haven't made the effort with my dad like I should have, I've moaned about him when he didn't deserve it and i have judged him when I should have been supporting him. Overall, I haven't acted in the way a daughter should have, and that's something that I will always, always regret. Theres no excuse for it, I can't come up with any substantial reason why I have acted like this, except for my own incompetences as a daughter, and overall a person.

 There is an old, well known saying 'You don't know what you have, until you don't have it anymore' and I think the same can be said for nearly not having something anymore. When you are faced with the possibility of loosing someone you love, it makes you realise just how much you love them, what a big part they actually do have in your life and just how much you wouldn't be ale to cope without them. I can safely say that the past few weeks have taught me this, and I hope it is a lesson I will never forget. I realise now, just how important my dad is to me, how much brighter the world is for his existence and how dark my life would be without him. Never again will I fail to make an effort to be in my dads life, and to allow him into mine. You only get one set of parents, one father and I will cherish him with all my being.

 Thankfully, after so many days in hospital the end is near. He should be home within the next few days, and the next steps of his recovery will begin. It's not going to be easy, he's going to have to adjust, let people in and allow people to help him when he needs it. Not only that, but we are going to have to come to terms with the fact that we will need to help him in so many ways, and that it's going to be hard. But we are a family, and we will stick together because that's what families do. They support each other through thick and thin, good and bad, and they don't judge. The accept each other for their strengths and limitations and I know, in my heart of hearts that we will come out of the other side of this stronger for it.

It sounds hopelessly melodramaric to say that this week as been one of the most challenging of my life, and almost certainly one which at its end my family will never be the same again, but I can not think of any other way of describing it. Sunday night my dad was in an accident, one which he was more than lucky to come out of alive. Someone was truly watching over him that night, and despite the fact that this is a truly life changing accident, whoever that was saved me from loosing my dad that night. Sunday evening mum had a phone call. I quite often over hear her on the phone, if she hears bad news we get the standard 'Oh my god! That's awful, keep me informed won't you?'. It's normal for mum to get calls like that, working with the elderly, death and illness are part of the job. But something was different, I felt some seance of foreboding about this phone call and I didn't know why, until ashen faced mum came down and told me that dad had been in an accident and broken both legs. I was worried for my dad and I was upset that he must be in a lot of pain, but people break legs all the time, two broken legs, though horrible can't be that bad can they? But it wasn't just broken legs, plaster casts and pain killers were going to do nothing for him. I arrived at the hospital, and when I saw all of my dads wives family in the waiting room suspected that this was more than a couple of breaks. When I was walked around to resus my suspicions were confirmed. He looked so vaunerble, my dad, my strong, proud, bulletproof dad was laying there broken and in pain - and I couldn't do anything about it. I'll never forget the look of confusion and pain in his eyes, he didn't know what had happened to him. He didn't know where he was. All he knew was that he was hurting, and he was scared, and at the point in time I would have done anything, anything I could to have removed that pain and that fear. Over the next few hours I realised just how lucky I was to be standing there holding his hand, and having him looking back at me. I was so close to loosing my dad that night, so close to not having a father to walk me down the isle, and nothing can prepare you for that. I was soon to learn that he had collided with a 4x4 whilst out on his motorbike, and air lifted to the nearest specialised trauma centre they could find. There he was diagnosed with two badly fractured femur's, a broken wrist, a broken arm, a dislocated shoulder, broken nose, broken sinus bone and widespread brusing. The next day they added brusing to the skull to that list. The next day I arrived to find him pale and exhausted, and was informed that over night he had taken a turn for the worse. His sats were worryingly low, when he took his mask off to have a sip of water they promptly dropped to 75%, they suspected that his lungs had been damaged in the accident, and we're ready to move him from ITU to NCCU - but our prayers were answered, and now he is picking up a little. Right now we are all struggling to come to terms with the fact that my dad has been in a life changing accident, that he may never be able to do all the things that he used to do. He's struggling to come to terms with the fact that this is going to be a long, hard road to journey up. I still have my foolish moments, the points in the day where I shut my eyes and tell myself when I open them it will all be over. Or when I'm walking to the bus I catch a glimpse of someone who looks a little like him, and my heart starts for a second, as a glimmer of hope makes me believe the whole thing was a bad nightmare. I'm finding myself clinging on to the last day that we spent together, him walking along, darting out of my was as I go to hit him for some tasteless joke. I wonder if he will ever dart away like that again? I am getting into what now feels like a routine of waking up wishing, going into a long crying jag, stemming my tears long enough to eat and then crying some more before pulling myself together and going to the hospital. The six hours there are painfully slow, and yet the look in my dads eyes when I have to leave him make me wish I never had to leave.. But I have to, and so I go home, cry some more, and fool my body into a chemically induced sleep. I know this routine is going to be my life for a long time, and though I feel selfish for saying so, I don't know how much more of it I can take. I just want my old daddy back, the one who spent most Sundays whiz zing around the countryside on his pride and joy, the dad who would spend hours with us playing tigers and lions, just to keep us amused. I want him well again, and not being able to make that happen makes me want to hide in my little world where nothing is impossible and nothing will cause me sadness.

It has been a while since I last posted on here, I would apologyse to you all - but chances are theres no one to apologise too! I mainly write this for myself to be honest, its a kind of therpy for me, helps me organise my crazy life and thoughts into one simple post (if only it was that easy in real life!). I cant say that anything groundbreaking or life changeing has occoured in the past month or even anything worth reporting.

Uni is going well - my attendance has been slightly shoddy, I have had a few days off because of illness but otherwise all is well. I have also handed in my first UCS history assignment, and I am just starting on an English one, which is due in a couple of weeks. Fingers crossed they go well and they don't both come back as fails - I don't think I would be able to contain my disappointment if that was the case! I am actually enjoying English a lot more than I thought I would. Mainly because at the moment we are reading short stories, so my poor concentration is catered for! I have also fallen in love with my new kindle. So many books on such a small gadget! Its amazing! I really do sound like I should have been born in centuries gone by.

My student loan has also arrived, and thankfully I am in a much better financial situation for it. Even if the student loan company has not thought to go against their general theme of making major mistakes with loan amounts, at least I now have money! I must say i am a terrible with money. I will only ever be rich if the money comes in just as swiftly as it leaves, and I don't think that possible. Though after months of no money, I think i deserve a week in which I get myself all the little bits I have been lacking over the last few months.

Oh, I have also managed to, in my infinite wisdom, drop my iPhone down the toilet. I now have a rather temperamental phone, which is lacking sound, a camera and a home button. Thankfully the water damage only went as far as to damage those areas and not the entire thing. Roll on upgrade day, just cant come soon enough I am telling you that for sure.

I have positive and negative news as far as my health is concerned. Up until recently my chest has been fairly well behaved, I am now on 15mg of pred as a maintaince, which is the lowest I have been on for at least six months! I have only had a few occasional where I have needed to increase it up to 40 for a few days, but I have always managed to get back down to my maintaince dose relatively easily - its a miracle. Rather annoyingly so I am going through a rough patch at the moment, I was very close to making a visit to hotel de la nhs last night, but I managed to get things under control. I must remember though that even though I am going through a rough patch at the mo - things will get better, because they have been so much better recently. One set back doesn't mean I have to start all over again!

The negative news is that a previous near diagnosis of ME/CFS has risen its ugly head with vengeance. My notes now state that I have fibromyalgia and ME - a diagnosis which I resent in every way possible. I guess if it was something like a chest infection, where there are good, established methods of treatment, I wouldn't be so resentful of it. I guess I would even be pleased that my symptoms have been given a name and can now be treated - but no such luck. I am better than I was though - much better. I am now able to get in and out of the bath by myself, and I can manage the occasional walk into town. Though the tiredness and pain that hits the next day is so intense and indescribable that I am not sure if it is worth it. I have also given in and started using a crutch to help me get around, I was finding myself so wobbly that i had lost confidence, as much as i hated admitting i needed it, it has helped. They have also managed to get my general pain a bit more under control, but I am still getting a lot of 'breakthrough' pain, there's not much more they can do except oramorph which I really don't want, so I am trying sleeping tablets in the hope that I can just sleep though the pain and that maybe sleeping well will help me be able to cope with it better. I don't know, I have had one night of good sleep, but I haven't noticed any improvement during the day time yet to be honest.

There is also the very exciting news that a wee Scottish lass called Gilly  is coming to stay with me for a week at the end of this month! we are spending a night in a five star London hotel, meeting the wonderful Kirsten and  spending a day in Cambridge with my partner in crime, Emma! I am going back to the land of the scot's afterwards, where I have been promised a commando Scottish man playing the bagpipes in a kilt and an introduction to some bizarre activity called 'Egg Rolling'. Don't ask me, I haven't a clue.

Anyway, I am going to sign off now, and try to rest my weary head! i promise i wont leave it so long next time!

Muchous Lovas
Kirsty xx

Today has been on of those 'nothing' days, the sort of day you look back on and cant actually pin point anything you have done which is remotely worthwhile. Some would say that constitutes a good, relaxing Sunday, others would say its a display of my laziness. I have chosen to go with the first summary!

Tomorrow is the start of my second week at University and I am looking forwards to getting on with life and getting a routine going again. I find it some what comforting that I have plans for almost every day of the week, even if those plans only occupy a part of the day, yet I feel these may be due to change, it is all dependant on the answer I get tomorrow regarding my full-time or part-time status.

If I am officially a full time student, I will again be entitled to a student loan. Thankfully this will mean I do not have to worry about finding work. It is not that I do not want to work, not in the slightest, but I know that to earn enough to support myself I would end up having only one day a week off. Which for me is thoroughly unrealistic, I am already struggling at the moment, I wouldn't cope with working or being at uni six days out of seven. There is also the problem that most part time jobs wouldn't provide me with enough income/days of work to realistically qualify for sick pay, and with my health being as it is, I need the security of knowing that when I am ill or in hospital, I still have some sort of income.

I have spent some time today tidying my work space, and I am planning on buying some magazine boxes tomorrow, so that I can have one for each module and store my things in some sort of order. I am fed up of searching through piles of papers to ascertain which will be useful and which wont! I also have to sort my notice board out, it is somewhat erratic!

Anyway, I am off now, I am thinking about an early night, but I am running out of painkillers so I don't know how likely a restful sleep is. I think a trip to get some more is in order, I must get some potassium top up juice whilst i'm there.

Night night -
Kirsty x

I get the feeling that this week has somewhat taken its toll - I've not really had a day where I have relaxed completely, and so my body is now screaming at me! I have that horrible feeling like I have cotton wall in my ears, my muscles and joints are killing me and I may as well be walking on a fricking bouncy castle - my balance is bad enough!

Right now I don't think I even have the energy to get up, and if I'm still feeling like this in the morning then I'll stay in my bloody bed! Thankfully I've taken some painkillers which are helping a little, and my lungs are being somewhat behaved so all is not too bad :)

Anyway. I'm going to sleep now, I can barely keep my eyes open!

Night x

Once again my thriving social life is taking its toll. Its so hard to keep up with all my friends and the many, many plans I have, my life is just one big social gathering! How I cope with being in such high demand I will never know.

Hah.

If you take into account the fact that this is written at 10pm on a Friday night, you will probably guess, and rightly so - that the last paragraph was overly sarcastic. I'm not sure if its normal for a girl in her twenties to be in her pj's by 8pm on a Friday night, but then again - has there ever been anything normal about me? I am a craft loving historian who worships her pyjamas after all!

I feel the need to document the incidence of pure ninja skill that I displayed a few minutes. Whilst sitting here typing a photo frame fell off my wall, which I caught. As I went to catch said frame I knocked my laptop, which I stopped from hitting the floor with my foot. The laptop cable however was wrapped around the lamp, and pulled the lamp from the table, which I caught with the other hand. All in the space of a few seconds. If that isn't impressive I don't know what is!

I have had quite a good 'lung' day today, I was grumbly earlier whilst walking around Cambridge, but thankfully thats settled now and I feel okay! If all carries on like this I am on track for reducing my steroid's this Sunday, so fingers crossed! If I do I will be on the lowest dose of steroids I have been on for nearly 4 months, impressive huh? Only problem is, I cant actually remember if i've been taking 30mg or 25mg! I shall have to consult my dosset box!

Anyway, I am going to go now. I have a headache brewing and Tilly (My cat) has decided that I am not allowed to type anymore, shes nudging the screen with her head, and attacking my hands as i type. The princess obviously wants some attention.

Sleep well all! 

Kirsty - aka the happy wheezer!