Welcome

Welcome to my page, which I hope will entertain you in some way, shape or form. I am your average 21 year old, I laugh too much, have moments of obvious immaturity and spend far too much time procrastinating. A lot of my time is spent dealing with my health, I'm in and out of hospital with severe allergic (brittle) asthma most of the time. I hope, however foolishly, that this page will provide you with an insight into what its like to live in my world, from admissions, clinic appointments and many, many days in bed.

Sunday 30 June 2013

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.

Thursday 27 June 2013

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

Saturday 22 June 2013

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