Today has been a miserable day. A very fed up sort of a day. Today I have been well and truly stuck in the hodpits. Physically, things are slowly improving and the consultant is keen to try to get the aminophylline down tomorrow morning. I don't feel fantastically stable, but I do feel better than when we tried to reduce the aminophylline last Friday, and I've been doing okay the last couple of days on a reduced dose, so hopefully all will go okay. My lungs feel a bit twitchy and gunky still - more than usual at this stage of things - but it's right that we try to get the aminophylline down and see how things go. After all, I need to get the drip down before I can begin to think about getting home.
Home is definitely where I need to be heading towards. I'm so sick of hospital. I'm sick of being ill and of the relentless nature of it all. It's months and months since I've been truly well and it's taking it's toll. I feel like I lose myself to illness ... like I become nothing but illness, with only illness to talk about and only illness playing any part in my life. The life of illness is not a life, it is existence. It is the mere getting through each day, but without any other real purpose. This is why I try to live a real life as much as I can when I can, because we all need purpose and reason and positive things. I need things other than medicine to keep me ... real.
Right now I feel like I am a container for disease and decrepitude. I feel so seperate from all that makes me who I am. I ought to have started back at university last week, and now I don't know if I'm going to have missed so much that I'm going to have to defer a year. I worry about that. It's not what I want to do, but at the same time, I don't want to compromise my chances of success on the course simply because I've been ill - the result would reflect my illness, not me. I can't do anything about this until I get home and can speak to the course director, but it doesn't stop me from fretting.
I will write. I have been writing in my head. I have a couple of bits and pieces floating around in my mind that I want to put down on paper for my book, but I haven't had the brain power to think in a writerly matter. Writing will keep a bit of me real. Thinking about the writing keeps that bit of me alive, but I actually need to do it if I'm to sustain the life, and for that to happen I need just a tad more energy. I'm so exhausted.
When I think of how active I used to be I marvel at myself, not that I was anything marvellous or special, but just that I could do all those things. In actuality, all I did were the things of normal living, but so many of those things are so far removed from what my life has become that they now seem amazing to me. I never thought I'd be reduced to lying in a hospital bed, day after day counting the holes in the ceiling tiles, and every day knowing that there'd still be sixteen hundred in each one. Okay, so I won't be here forever, but I know that when I leave it will only be a temporary departure, and that when I return there will still be sixteen hundred little holes in each ceiling tile, and that when I return I will be back at the beginning of another fight for breath. If I'm lucky I'll get through it, but it's never without its scars because even each scratch of an interruption in life leaves its mark.
Maybe none of this makes any sense. Maybe it's all a huge ramble that means nothing to anyone but me. Maybe I'm just feeling sorry for myself. Maybe so. That doesn't matter. The fact is that I'm miserable, and to be honest, I think it's reasonable that I'm miserable about it all sometimes, and maybe it's even reasonable that I tell you about the misery, after all, you have the choice of whether or not to read it - I don't have the choice of whether or not I experience the things I do. Yes, I will allow myself to wallow for a while, because sometimes wallowing can be the healthy thing to do. Wallow then let go knowing that I've given myself permission and the time to feel what needs to be felt. To misquote Michael Leunig, 'Let it go. Let it out. Let it all unravel. Make it a path on which to travel.' (The Prayer Tree, 1990).