Sunday, 13 May 2012
Well I've decided to finally get my arse in gear and update this. Wayhey!! Only taken me 4 months! I've had so many people asking me to post a wee update and I can only apologise to everyone (and there were a lot of you!) that I promised to do so but never did. I swear I had every intention of updating it but I've had literally zero motivation to do much these past few months, especially write in this. Anyhoo I'm here now, so once I'm started it's pretty easy to carry on :)
Most of you all pretty much know what I've been up to since the new year. Mainly because it really isn't much at all! Most of it has been spent in the hospital (nothing new there). I've been on and off IV's roughly every 2 weeks, had a couple of spells where I was a bit more unwell than 'normal', but managed to do some of the courses of IV's at home when I've been feeling up to it.
Also had another false alarm back in February which never came to much. They called me in the middle of the night and I was in hospital at the time but was feeling reasonably well by this point. Anyway, it never got any further than a few phone calls over the next hour between the transplant co-ordinators, the doctor up here that night, the folk at the donors end, and me obviously. Turns out my infection levels were still a bit high to risk going through with it and some blood tests on the donor came back positive for Hepatitis B. Then later on when they removed the organs they found that the lungs were pretty dodgy looking. Bad lungs from a 50-year old male smoker with Hep B? Think I'll hold out a wee bit longer thanks!
So because of the lack of progression in terms of these new lungs appearing, I've become pretty bloody fed up! Which is another reason I've not written in here, cause I don't want to put you all in a downer with all my depressing moaning. But now I've started you'll just need to deal with it!
It's only the past few months that it's really started to bother me. Probably cause before I had always clung onto whatever wee bits of independence I still had, but all those have gradually disappeared and I've realised how totally reliant I am on Rab and other people. I know everyone keeps telling me they don't mind helping me but it's not about that, it's the fact that I just want to be able to do these things myself. Things like getting showered or drying my hair or even just reaching something across the room because my NIV wont stretch far enough. Then there's things that I've not done in so long that people don't think about not being able to do but for me is either impossible or such a monumental struggle that there's just no point in trying cause I get too frustrated at all the planning that needs to be done to do it.
And I think now it's started to get me so fed up I just don't have the motivation to do the things that have been keeping me occupied like watching the telly, DVDs, reading, texting people. I even find now that most days I don't want to see or speak to anyone. It's nothing personal I swear! It's just that I think I'd rather sleep until the phone rings to say "get ready, we've got you some sexy new lungs!". But I really don't know when that will be. Or now I'm starting to think even if that'll be...
Just one last thing before I go. Something I don't think some people quite understand and I find myself repeating constantly. I can't come to gigs, birthdays, nights out, parties etc. I'm on this ventilator 24 hours a day and I can't go outside with it on. Which means I can't leave my house at all. And this won't change until I get my transplant, which I don't know when I'm getting either. I don't mean for it to sound short or snappy but I'm not sure how else to say it any more for everyone to understand. I guess being cooped up in the house/hospital for so long has turned me into a moody wee bitch eh? ;)
Well that's all for now I suppose. Let's hope I don't disappear from the bloggy world for another 4 months