One lovely afternoon!

So, today has been lovely and I think I've done more today than I have all week! I went to see my Auntie Debbie this afternoon, her garden is beautiful. I've not seen it looking so lovely - all the plants are out and everything just looks really pretty! I wanted to get a photo of the length of it but the sun was really bright and it just wasn't happening - so I got this one of her climbing rose tree. It's beautiful.

Then I went to see my brother and his sister at their flat - it feels weird to say it because though the have been gone over a month now it is all very new still... They are so happy though and have made it so homely it's great to see them so settled! Then I went home and sorted myself out a bit to go over my friend Stacey's for dinner, we had what was my first BBQ of the year! It was lovely to sit in the garden and relax, I had a lovely time and the food was very yummy!

I'm now home and laying on my bed watching The Kings Speech - one of my favorite films I must say... its a great mix of interesting and funny, which is always a good combination :) I'm absolutely bloody knackered after my busy afternoon though and so a good film and a bit of a blog session is just what was needed. I'm on a reducing course of steroids at the moment, trying to get down to my maintenance dose again, which I haven't been on for a good few months. It is slow going and alongside the issues it causes with my bagpipes I have been in a lot of pain, and my muscles have been weaker than usual meaning I am struggling to do much. I get worn out really quickly and can't seam to get comfortable whatever position i'm in, making it hard to get a decent nights sleep!

Oh, and my friend Ellie met Jeremy Kyle at the Newmarket races. I am well jealous! Sad I know!

Anyway, time to say goodnight and finish watching the film! So, night - blog again soon -

Kirsty xx

Quick update!

I hate to say it, but I want it to rain. I want the sun to go away and for it to rain enough to cool England down and stop it being so muggy! Apparently me and the heat are not best suited and I just have a great temptation to scream 'I'm meltingggg, I'm meltingggg' over and over again! I am surprised that my fan is still going strong and hasn't over heated either - its been on pretty much constantly since Friday and I'm not planning on turning it off any time soon.

Whining aside it has been lovely to have a bit of sunshine, and to enjoy it with family and friends - if it was horrible and wet we wouldn't want to go out! Ive had a busy weekend actually and now all I want to do is sleep for a few weeks! Saturday was dads birthday and he had a Hawaiian party at his step daughters house, then the next day (so today) we all went over to Marks and had a Chinese - dad was hungover though so I don't think he enjoyed it quite as much as he could have!

This coming week isn't exactly full of plans, which is definitely conductive to my wish to sleep for as much of it as possible! I think I am going to need it as well, I'm struggling to sit upright to type this, my lungs are moaning and my legs just don't seam to want to work anymore! I'm actually struggling with my BM control in this heat too, as I get all hot and my sugars drop, but then I dont realize they have dropped and end up having a manky hypo, another reason to stay in bed!

On the plus side, this is going to be the last week of extra antibugs and I will be back on my usual prophylactic antibiotics after that. Go me!!!!

Why asthma needs a cure.

I was looking through some photos today and was reminded just how important the work of Asthma UK is. 

The first picture is of me before 4 years of steroids, the second picture is me afterwards. Steroids are a last resort drug and wreck your body, keeping you alive but causing even more problems in the long run.

Asthma needs a cure...

I may not have a degree, but I will remain positive, because life is too beautiful to be disappointed.

I've actually had more page views in the past week than I've had so far this year, which is crazy because all I've been doing is rambling about completely pointless rubbish! Though of course that doesn't actually take note of the number of people who are really reading it - just the ones who stumble across the page...! It does spur me on to write more often and to try and think of something interesting to say though. I am yet to decide if we bloggers are intellectually amazing, due to the fact that we have more to say than a Tweet or Facebook status can hold. Or, if we are in fact intellectual loners, who have so much to say and no one to listen so we type it out and publish it in a tiny corner of cyberspace! What do you guys think?

It’s a funny time of year at the moment, particularly this year as now is the time that the majority of my schoolmates who went off to university are graduating. I can’t help but feel disappointed that I am not graduating too - it highlights just how different my life is to what I had planned, and how my life differs from those peoples that I grew up with. I am trying to think of it in a positive way though, I have still learnt a lot in three years - even if I haven’t finished them with a degree...

If I was a 'normal' student, fresh out of uni I wouldn’t appreciate the fragility of life, the beauty in every second of every day and the need to live every minute like it could be my last. I don’t think I would laugh so much, because I would assume that I would have forever to laugh in. I wouldn’t love as deeply as I would be forever waiting for whatever was around the corner, expecting tomorrow and not living for today. I don’t think that I would truly appreciate every breath, the taste of clean fresh air in my mouth, oxygen running through my body - because I would take each breath for granted, believing that the next one will come just as easily.

I may not have a degree, but I will remain positive, because life is too beautiful to be disappointed.

Hey All,

I don't really have masses to report at the moment, as my days are not particularly filled to the brim with excitement! I have taken to spending a lot of time on craft projects and I am currently working on a scrapbook with holiday pictures in it for a friend, its taking a lot of time to do so its keeping me occupied! I have also taken up knitting, again. Funnily enough I am not massively inept at it, and despite the first few rows looking like Swiss cheese (full of holes) it is now looking much better and is starting to take shape. I will be sure to post a  few pictures of both projects once they are done so that anyone who wants a good laugh at it can...! 

Sadly, the vast quantities of time that I seam to be spending alone, with my cat, are turning me into even more of a batty cat lady and I have even downloaded an app on my iPad for my cat. Its hilarious, she plays it properly for a while and then just starts head butting the screen. As you can see on the picture below she does become rather engrossed in it. Strange animal!

Roll on September when my modules start and I can get going with that - hopefully it will divert my attention from knitting and iPad games for cats, making me feel somewhat less of a recluse! I have decide to start preparing for it soon though, which will mean that I have something else to focus on and make life easier for the start of the course. I realised just how terrible I have become at GCSE standard maths and that's the sort of level you need to be at to get the most out of my next module - so I brought some books and practise papers and I am going to get my maths somewhat up to scratch. How on earth I will manage that I don't know, because despite getting an A or B (My memory isn't that great) at maths I don't think I have any recollection of anything I had to learn! I am also going to be doing some work on AS/A2 human biology and anatomy and physiology. Hopefully that shouldn't be too much of a shock to the system as it wasn't that long ago I studied that and I have had to keep my knowledge up to some degree since then!

Unfortunately my health hasn't been too great as I have had a nasty virus and chest infection so my asthma has been pretty bad. Sadly I had to go into hospital on Sunday, via A&E and ended up on the RCU on N3 which is the equivalent of a respiratory high dependency unit and needed quite a bit of treatment. For those of you who know what it means, my chest was nearing on silent when I arrived, my 02 levels were decreased and my C02 levels increased, which isn't good at all. The doctors were great though and after some nebs, IV magnesium, hydrocortisone and aminophylline I was doing much better and my gasses had levelled out on 4L so I was put on RCU and given IV antibiotics (bug juice). This makes it sound like it was going swimmingly, which it was until the following morning!

I woke up at about 8am and was feeling really, really tearful - so much so that I couldn't speak to anyone without crying and ended up begging my mum to come in and see me. Well, by the time she had arrived I was sobbing constantly, I couldn't speak, couldn't stop crying and all I wanted to do was hug my mum and go home. All the nurses were really confused, as was I, about why on earth I was so upset - they all know me so well and all of the them were saying about how they had never, ever seen me like that before. things continued like that for the rest of the day, getting worse if anything, and by evening visiting I was in such a state that I wouldn't  let my mum go - and ended up self discharging. 

Removing your 02, telling them to stop your aminophylline infusion and leaving against medical advice isn't really the best thing to do. I regret it now, especially as it was a very silly and dangerous move to make - as I was still on IV anti bugs and the consultant who came around pretty much said that if I left i would be back in ICU within the day! Thankfully I proved her wrong, and once home went on a stonking dose of steroids, cocktail of bug juice and very regular nebs... so far I am just about coping so lets just hope that I carry on that way! I have also been doing a lot of chest physio in the hope that I can help shift as much gunk as possible and stop the infection from having a chance to take hold again! 

Since leaving hospital it has been discovered that the IV antibiotics they had me on were a type that I have never had before, and that a possible side effect of them, even though it is rare, are behavioural changes and emotional disturbances. Which explains why I was feeling so distressed, so it has been added to my notes that I should never be prescribed them again. I am rather annoyed that my inpatient team didn't realise that was what was going on, when my regular nurses figured it out straight away when I called them... if they had of it would have saved me a heck of a lot of upset!

Anyway - I am going to go now. I need to go find my cat who is hiding in the garden, and get some sleep!

Nighty -

Kirsty xx

Hey all,

It's been a while since I posted, but I've been taking some time to update my blog a bit, and make it a bit more informative! Its taking some time though and it is still work in progress - but we are getting there. 

There's internal links along the top now which, sadly took me ages to figure out how to place! I hope that they will turn into a bit of a information space as I answered some FAQs I get about asthma, and will have another soon with some links to places that might help if you need someone to talk to about  or just need some advice .

There's also some bits about me. I took part in the '30 questions about living with my illness...' quiz as part of invisible illness week,  and I have put up the answers. But I will add any others so people ask if you have something you think I should answer! There's also apiece  about what all this has taught me about life and living and some pictures of my journey!

I have put some links on my page to a few causes which are close to my heart. The first is Asthma UK, who I often refer to as AUK. They have played a huge part in my life and made it so that everything doesn't feel quite so scary. I've met two great people through AUK, at a weekend away in Manchester, both of them have provided me with loads of support and many giggles. The guys in the Wilson St office in London are the best and I couldn't fault them in any way, they don't just do their job, they really put everything into it and that makes AUK such an exciting charity to work with. 

The second is 'Live Life then Give Life' also known by a shortened version LLTGL! LLTGL is a charity which promotes the NHS organ donation register and encourages people to join it. One of my friends, the one in the picture actually, is suffering from end stage CF and desperately needs a lung transplant. She's fighting, they didn't expect her to see Christmas, then it January, March -until  its July and she's still here fighting this thing day in day out. She deserves this second chance, and she can only get that if people sign up. 

A very close friend of mine Janine, is one of the most genuine and strong people that I know. Thanks to the care she receives at Addenbrookes and Papworth she is still here and still going - and together ACT and LLTGL support the care she gets.

ACT means a lot to myself as they fundraise for Addenbrookes hospital - the hospital in change of all my care. ACT makes it so that patients are well looked after in every way, enabling the medical staff to get on with delivering the medical care that is going to save lives. I don't knew what I'd do if ACT had not funded things such as the library! Die of boredom?! ACT also links into the Addenbrookes website. The doctors at AUH are great. From the minute I walk into a&e I am cared for in the best way possible and they always aim to do what is best for me - even if it means going against the grain. The ward staff on N3 are easily the greatest bunch of people I could hope to be cared for by! Always a smile and a gossip! I don't even think works could describe how great my specialist nurses and doctors are either - it would not do them justice! 

I am aware that the above do scripts do not do the three of them any justice - and I am planning on making sure that they get a proper mention and a clear link to their site as I think it so important they get the recognition and support they deserve. 

I didn't realise tags this update would be quite so lengthy before I even get around to telling you about everything else thats happened, that's okay though - It gives me something to talk about tomorrow :) 

So, till tomorrow!

Kirsty.  Xxx

It’s definitely been some time since I last blogged, if I actually had more than seven followers I might take the time to do it more often! Though, as this blog will tell you a change in circumstances means that I will now, for the mean time at least, have more spare time on my hands.

 Not much has changed around here; dad is still recovering from his accident, and is doing it at a rate that has amazed us all. I think it’s his sheer determination that has done it - but he appears adamant not to let anything stop him, and he had made more progress than we could have ever imagined. Not only is he walking, but he’s only using one stick, he can get up and down the stairs and has managed to start driving again in an adapted automatic. I am more proud of him than I can possibly say and if sheer determination was enough, he would be up and running marathons by now.

 Mark has moved out, he did so yesterday - into a lovely little maisonette with Caroline. It’s weird not having him here - I was always aware of his presence in the house, even if he didn’t leave his man cave much... It is weird not to hear the noise of him tapping on the keyboard and late into the night, and not having to tell him to turn his TV down! I didn’t think I would ever say this - but I think I miss him already! My god I hope he doesn’t ever read this; I’ll never live it down.

University is well, over. I’ve tried for the past two years to get my degree, and to fight whatever my body throws at me to do so, but it’s not happened and I have used all my chances. I missed too much to catch up, lost out on far too much teaching time due to being ill and in hospital and sadly English literature isn’t the sort of subject where you can wing it. One of my exams involved questions on a random selection on the 20 odd books we has read in that module that semester, you can’t blag that no matter how much wishing you do. After a lot of tears and sleepless nights I finally explained it all to mum who was amazng, and as usual supportive to the point where I wondered why on earth I hadn’t spoke to her sooner. Dad was the same. Like all people, I am guilty of moaning about my parents at times - but I can honestly say that I couldn’t ask for better, and even if I could, I wouldn’t want to.

It’s scared me slightly how unreliable my body has become, and now dependant I am now on those around me. I am pretty much constantly breathless and it’s a rare day that my lung function hits above 60%, which makes it so hard to get around and get on with my life. I have become more and more reliant on the health care team at the hospital - and I am now under the allergy nurses, respiratory nurses, physiotherapists, community respiratory team, breathlessness intervention service, diabetes nurses and numerous consultants. I can’t fault them though - they are great and my GP surgery has been excellent at liaising with them all and making sure that I get the care I need, plus if I have any problems my notes scare the other doctors so much that they 'squeeze' me into see my GP who knows me very well.

In terms of treatments there’s not really much more they have to offer me at the moment. We have reached the point of giving up with the Xolair - as we are not sure that it’s having much of an effect. In a way it’s a disappointment and whilst I know that wishful thinking is not going to make it work, it was my light at the end of tunnel and it’s well and truly gone out now. My consultants have told me that my options now revolve around minimising my symptoms with regular nebulised bronchodilators and using prednisolone as maintenance at the lowest dose possible dose to control them. Then I will just have to have a low threshold for increasing it when I am unwell, with the hope of getting there quickly enough to stop the journey to admission.

Prednisolone, the fall back drug for treating asthma has some horrible side effects, and if you was to Google it I think you would be shocked at just how many there are! Steroids as most call them are something that most asthmatics have a hate love relationship with, In short bursts they are massively effective and do not cause any long term side effects. Regular prednisolone use over the years can pretty much ruin your entire body. I have osteoporosis, diabetes, retinopathy, chronic pain, muscular atrophy and adrenal insufficiency as a result of long term steroid use. Some say that it’s a fair price to pay for breathing - and they are right, I’d rather life my life with the side effects than not live at all. I know that my life isn’t going to be massively long because of them - but it’s about the quality of my years and not the quantity of them that matters the most.

Though I cannot say without any fibbing that the inpatient care I receive at Addenbrookes is faultless - but the majority is and it's is a shame that some people seam to manage to ruin all the good work that they have done in one shift! The nurses are amazing and always care for me well. My last admission I was wheeled into the resp ward at 2am and ended up with 4 nurses in my cubicle who had all come for a chat and to see how I am doing. The next morning I was insulted by the senior sister, because apparently she’s allowed to torment her frequent fliers. Then that evening the nurses doing handover were all drawing straws because no one wants to have to be scared by me and my nocturnal asthma. How rude! Loll. The majority of the doctors were great and I had a real laugh with one consultant about hammers and eggs. Don’t ask! Though I always seem to get one doctor who appears t be a complete arse, treats the computer and not the patient and also has a magic stethoscope which means he doesn’t even need to enter the room to know what they sound like....!

A&E staff are great too - they seem to like that I arrive with instructions and follow them because they are too scared to not too! This means I have always had my hydrocort, mag and amino written up and started before I leave the ward. It’s normally to a bed in RHDU, where if I am lucky the night nurse looks over at me and tells the doctor that I am always like this and that they need to stop freaking out! Otherwise I tend to get the really annoying thing where one doctor comes in, wants me in ITU, then another doesn’t, then they leave me on RHDU with close monitoring and decide to prepare in case I need some NIV . By this point I just want to tell them all to sod off and leave me alone! But once I am off RHDU and in the main bit of my lovey N3 everything is much calmer and the amazing staff has made me have some of the best out of many admissions. Thankfully I have only had two admissions in the first 6 months of this year, each one for a couple of weeks, as the care I receive at home is excellent and they really do help stop me from needing to be admitted.

I hate just how many medications that I have to take and the amount of time I have to put in to make sure that I stay well enough to be at home. Every morning I take at least 30 tablets and then insulin on top of that. I then have to do my chest physio which takes about half an hour and my nebuliser which takes about 40 minutes. I have to repeat that again at night and during the day I have more nebulisers and tablets to have. My pharmacist is faultless though - literally! He has really taken an interest in ensuring that my medication is well managed and that everything is given to me on time, even if it means extra work for him. Going to pick up my dossets is no longer something I dread as I can’t be bothered with the hassle of getting everything fixed that has been done wrong! I know that I can trust them to get it all right and greet me with a bad joke about bringing a suitcase or wheelbarrow next time.

 I’m getting better at managing myself now. I know what my limits are and when I can and can’t push them. I have figured out just how long I can carry on before I need to ask for help- and I am getting better at asking for that help and accepting it when its been offered to me. I have kind of turned keeping well into a full time occupation. It’s my job to know exactly what meds I am on, (My repeat list is seven pages) how much and why I take it. I have to keep a good track of appointments and keep everything I am given as information about myself or my condition organised do that I have s record that can move with me.it helps in clinic too - I am very on the ball!

Anyway I will go as its 3am and I am struggling to keep my eyes open! I'll update soon, promise.

Kirsty x

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