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!

Forgive me Followers for i have sinned, It's been nearly a week since my last post, partially due to feeling slightly overworked, partially, well mainly due to my disinclinment to work or exertion.

Since my last post two main events worth reporting have occurred. Firstly I have started university, and, despite my less than positive musings it's actually going quite well. People seam to be really friendly and supportive, and so far I am yet to meet a person who proves that thought otherwise. The workload is, without a shadow of a doubt, alot more substantial than that of my old university, but I'm thinking upon that as a good thing, as opposed to a negative. It means I am more likely to do better in my assignments and are prepared, much more realistically for whatever comes next.

It's been nice being around friends again, and spending time with people that I haven't seen for a while. It reminds me though, and makes me wonder, why all of my close friends, or people I get on with most, are at least five years older than myself. Most of them at least ten. Maybe, as it was once put 'I was born middle aged, and just get more so each year'!

The second event that I feel I should notice is my surprise visit to the respatory clinic! Yesterday I made a phone call in the hope that I would find out the date of my appointment, only to be told it is in fact, that day at four!

Luckily my friend who was with me already yesterday, was due to come with me for the appointment so it didn't work out too terribly. Thankfully it actually went quite well, and I didn't leave feeling throughly despondent. She didn't change anything much, but told me to keep on reducing my steroids, like i was, but even more slowly and see what happens, because we can replace it with something less roidy. She wants me to keep an eye on the salbutamol nebs as well, and to make sure that when I use it I actually take notice of how much I'm having and if i could try up to 10 puffs of an MDI first. Looks like I'm going to need some more IgE levels done too, that way I can be assessed for xolair properly.

So yes, overall it was a fairly positive appointment. I felt listened too, she didn't say it's all in my head and she took a lot of time explaining and hearing my opinion on things. Sometimes I wish I had an on demand wheeze! They listen to my chest and say 'oh it's clear' and base treatment a lot of the time on that - despite the fact that I may be good today, but tomorrow I may be awful!

Anyway. Time for me to stop my insignificant rambling,

Mucho lovas
La heureuse wheezerrrrr

So I was rather bored today, and I discovered a web site called 'Letters to my body' - the idea is that people write a letter to their body and email it in to be put up on the site. It looked like fun so I decided to give it a go... Here's my letter to my body.... 

PS. I know this doesn't constitute a real post - im working on it!

Sometimes something happens, something so unexpected that you are left standing there struggling to believe the events that have just unfolded. It leaves you suspended in a moment where you are unsure if it is indeed reality you are living in. Today held one of such moments, and if I am honest, a part of my mind is still stuck in that moment. That 'something' is sometimes good, sometimes bad, and today it just happened to be bad.

The person it happened to couldn't be a nicer person if she tried, and so does not, in any way deserve this, but nothing other than happiness. She is a person who I would trust with not just my own life, but anyone who I care about, and to see her treated in such a way doesn't just anger me, it saddens me. I will be there for her throughout all of this, and I do whatever it takes so that in the end the outcome of all of this will be the one she deserves, not this.

This weekend is due to be a busy one, and if I am honest I have deliberately planned it this way. I am hoping that the sheer amount I have left myself to some how fit into 48 hours will distract me from my first day at university on Monday. I have work tomorrow - thankfully mine is the sort of job where if it is quiet I can get on with some work, and so I will be planning on spending some of the day sifting through sources and taking copious amounts of notes on said sources. Then, all there is to do is to somehow transform this into an acceptable essay plan, which I am happy to allow my lecturer to see. I think luck is needed. After that, I am back to the wonderfully exciting task of reading historically academic texts and various other forms of literature.

I am also due to start filming my video blog ('vlog') this weekend, the plan being that I will record two short videos, the first will be filmed on Sunday. I am thinking that Sundays 'vlog' will be mainly an introduction to the crazy world of Kirsty, what its like to live with a set of misbehaving lungs, and what that means in terms of education and work. Hopefully Mondays vlog will contain a report of what was a successful first day. Fingers, toes, and just about everything else crossed.

Anyway, I will sign off now - there's much, much more that I can say, but I will save that for another day. Thank you for reading,
Kirsty - Aka, Happy Wheezer!

I was planning on blogging yesterday, but I felt so awful I couldn't bare to even look at the screen, typing was completely out of the question. After blogging on Tuesday night it took me a long time to neb my lungs into submission, which subsequently dropped my already pathetic potassium levels, by 7am I was cramping all over and vomiting like a baby with reflux! Thankfully I managed to get some yucky fizzy potassium containing crap into me and a few hours later I felt so, so much better, I was just left feeling rather ran down for the rest of the day. But I was even well enough for waffle time! Waffle time, waffle time, would you like some waffles of mine!?

Its not long until I am starting uni again, as I said before I am really nervous about it - but the excitement is starting to break through, and I am starting to relax a little! I am going to be doing a video blog for Asthma UK about what it is like to go to university with brittle asthma, and some tips for others that are going through the same thing, and i'm very excited about it. I will make sure the links go on here, so that if you want to, you can have a look!

Anyway its getting late, and I have to be up early tomorrow, so I shall say good bye, and update tomorrow!

Kirsty x

The fact that I am writing this at 6am might make you wonder why on earth I have awoken so early. If only. Sadly, I'm yet to fall asleep. I seam to have, as usually happens when something important is approaching, developed another chest infection. Just in time for university on Monday. Typical.

However, I am hoping that because I have caught it early, and I will be starting on the old anti bug juice tomorrow, I will manage to ride this one out at home. Fingers crossed all goes well, and there's no need to return to costa de la nhs!

I have had a lovely week with my friend, it's been a pleasure to spend some time with her before uni starts and life gets in the way of socialising! Thankfully I still have another few days left at Masion de la Ellie - and they look like they will be a good few data. Tomorrow will be spent chilling, dealing with my unruly lungs and quite possibly baking. Thursday is a trip to the much loved IKEA - at which mine and Ellie's ability to shop is truly showcased. Friday, well I haven't a clue what the plan is, but I can't imagine it will be anything short of relaxing and enjoyable!

Anyway, it's time for me to say goodbye. I'm starting to get cramp in my hands and arms, caused mainly by by the fact my potassium is probably in my boots, and aided by typing away on my phone.

Let's hope I get at least a few hours sleep - wish me luck.

Much love,
Kirsty x

I must apologise for becoming somewhat lax in the blogging department. I noticed my last blog was Wednesday, and being today Sunday I appear to be a bit behind. I am happy to say that my break from blogging was not due to anything such as illness, for once - but quite the opposite! I have spent the week staying with a friend - we have been watching rubbish on television and generally being unproductive. I can safely say I have enjoyed every minute of it.

The Monday after next is when I am starting at university again, but this time I will be living at home and traveling into bury each day. It probably doesn't surprise you that I am just as nervous as I was last time I blogged about the whole situation - but a part of me is looking forwards to getting back into the swing of things and learning again.

I am looking forwards to the week ahead, my last week of freedom! I am planning on staying with my friend until the weekend, when I have work, Sunday will be spent preparing for university. I am planning on collecting some work from home when I pop back at some point in the next few days, so hopefully if I get some of that done during the week, which should save me the stress of attempting to do it all on Sunday.

Anyway, it's getting late, and I would like to try and sleep tonight, so that I am at least half awake and out of bed at a reasonable hour tomorrow. Though, thanks to the copious amounts of salbutamol I've been chugging on the past few days, I am all crampy and my heart fluttery. Hopefully my body will right itself - like I said, I would like to sleep tonight!

So, I am finally home, and its looking like it will stay that way, even though there was a massive drama with the asthma nurse at the hospital, and I can safely say I will not be attending any more appointments there. Everything was actually going really well when I was discharged the first time, I had been put on two new drugs, theophylline was due to be started in clinic, to see if I would tolerate it, and xolair was a real option... then it all went tits up.

The asthma nurse arrived on my second admission, the first thing she said was 'You do not need nebs at home , because if you need nebulising you should be at the doctors or hospital' she then went on to say that I also shouldn't be on pred long term. Which is lovely - I would LOVE to be off pred and nebs, but really? I'm sitting here having aminiphylline pumped into my body for the second time in a week and you are trying to say that I need to stop taking my meds? Crazy woman. Does she think that I like pumping all this crap into my body? The best thing she said was 'your chest is clear, you have no wheeze and your peak flow is good, you don't need nebs' to which I replied 'That's because I had a neb half an hour ago.' We were just going around and around in circles.

So anyway, after she left I saw a consultant who was really positive, and agreed with the initial plan and not with her. The next day I saw a different consultant who then took me off the inhalers that were started a few days ago and wanted to put me on xolair and immunosuppressants and see if that worked enough to decrease my pred, but then the next day she was back. She walked in on ward round and told me I wasn't going to be discharged until I had stayed in for another 24 hours, so that she could prove to me that I didn't need regular nebs, and that i was not going on xolair or any other new tablets. If she hadn't have been so rude about it, and listened to what I was saying after I told her that it had already been tried and hadn't worked, then it might not have ended up with me self discharging and making a formal complaint! There was also the fact that it was a Friday afternoon, by the time i would be due my next neb she would be gone anyway, so she wouldn't be there to see me when I needed one! I would be stuck there all weekend...

All this has left me in a bit of a pickle! I am off to my GP on Tuesday and I am hoping for a referral to a specialist brittle asthma unit in Birmingham, they accept referrals from all over the country, and are supposed to be really good. So fingers crossed I guess. It just seams to me if your asthma isn't controlled in the standard way, then you are either accused of making it up, or not taking your medication properly, even though I have had two severe attacks in the past two weeks, and have had multiple admissions - how am I making it up?! They don't admit people for no reason you know! I just hope that something gets sorted soon, I am at the end of my tether with all of this, and I am running out of energy.

Ello Ello!!

I've been extremely lazy and neglected my blog for the past few days! I'm just trying to think back over the past few days, to see if there is anything special to report!

I was discharged from the amazing West Suffolk hotel, they let me go after a lot of begging. Funnily enough they wrote 'Patient keen to discharge home, registrar has explained that it would be best for patient to remain in hospital' y I think I'm just a stubborn bugger! As far as I'm concerned if they arnt doing anything I can do at home then I may aswell be at home!

Sadly, it didn't work out like that - I had one night in my own bed, andu lungs gave out. I was staying with my friend Ellie, she really puts up with alot from me! They were obviously keen to have me back though cause the paramedics even red phoned me, I had a welcome party, banners, streamers the lot!! They must have missed me.... Who can blame them? I am special AND important!

Plus, I'm not a faker like some people I know *cough*GILLLYEMMA*cough*!

Though I can't say I'm looking forwards to the whole seeing my consultant bit..... I hope it's the nice lady who discharged me and not the horrible man who did rounds one day!! If it is I won't be impressed!

Anyway, I think it's time for me to buzz for another neb and then I'll try get some sleep, exhausted!