Accidental decision

I'm not a whole lot better than yesterday, despite the slight increase in prednisolone, and this morning I was still umming and ahhing about whether or not to phone the ward, as instructed by the registrar yesterday. I decided that I'd see how things went a little longer and would make a decision by three o'clock. The plan was scuppered by falling asleep on the sofa for a few hours and not actually waking up until almost 5pm, so my decision was made by accident, because the docs would've left the ward/gone home by then. I will take things easy over the weekend and hope that things stabilise, or even improve, but obviously if they don't, or if they get worse, then I'll get myself to hospital. As I said yesterday, although my lungs are far from good, I don't actually feel as though I really need to be admitted ... at least not when I'm not doing anything - moving around is a different matter - and perhaps a little longer than 24 hours on increased pred will help. I guess I'll find out.

One of the difficult things about an unstable chronic illness is the interruption it causes in one's life. I can't make firm plans for anything. I can't guarantee that I'll physically be able to do something on a particular day or a particular time. I still make plans, and I really appreciate the things that I get to, but there's always the possibility that I won't be able to follow a plan through. Take tomorrow for example - my friend K and I have taken it upon ourselves to organise monthly social events for those 18+ at church. This month we're doing an evening of games and puddings, which is happening tomorrow evening at another friend's house. Obviously as one of the people organising it I've been wanting to go, and I'm going to be making a Becky-friendly and gluten-free chocolate cake (K has celiac disease), but I know that the way things are lung-wise that there's the possibility that I won't be well enough, although it's not going to be a particularly active night, it's not far away (and I can drive there if I need to), and at least one of the people going is a doctor. I'll be disappointed if I don't get to it, but I know that I need to be sensible so I will see how things go. There is though something I very much want to get to the following Saturday, and this is a friend's 40th birthday party with a medieval theme and compulsory costume. I've known about it for months, I've bought the outfit - a medieval queen's dress (not the genuine thing!) - and I've been looking forward to it for ages. I'm hoping above all hope that I get to this so I have to make sure that I'm well enough. It's so difficult when there are things that I really want to do, have planned to do, and then see the possibility that I might miss out. And it's not just that I miss out on one thing, but that plans are constantly scuppered and can only ever be provisional. Sometimes I find that I make it to whatever it is that's planned, even if I'm having a bad time in the run up to it, but then do a spectacular splat afterwards ... it's almost like adrenaline alone keeps me going, and then it runs out so my lungs give up. Although this sounds odd, I don't mind that so much, because at least I've done something enjoyable and the thing that I wanted to do, though obviously I wish that I didn't have the post-event splat. Only time will tell if I make it to the games and pudding evening tomorrow evening, the medieval party a week tomorrow, and if my lungs will do a post-event splat, but I'm hoping that I get to them both and that breathing improves. In the meantime I have to be careful and sensible. How boring ;o)