Where did they go??

I used to wake up at night, almost every night, with cramps and spasms. This has all but vanished. They haven't gone completely but compared to what it used to be like it's like nothing is wrong sometimes. My headaches aren't anywhere near as bad as they were. I'm not a person to take pills for the hell of it so every headache I used to just grin and bear until it passed, but these days I'm not expecting my mid-morning apres-steroid headache.

What I'm trying to say here is that the most uncomfortable part of this illness seems to have passed. Every day I'm still fully aware of having C.I.D.P. but through careful medical planing and a bit of physio I'm feeling so much better.

All of that makes me wonder where all the pain went. Is it hiding under a rock somewhere waiting to strike again when I least expect it? Will I wake up some day to find that I'm back to square one? In all probability it's unlikely but these thoughts linger in the back of my head sometimes.

If I stayed as I am now for the rest of my life without improving any more I wouldn't complain but I'm not sure how much of a head wreck it would be if I was to start getting worse again. For today I'm happy with everything, I can walk, cycle, go fishing, play my guitar and fiddle and do it all pretty much pain free and I seem to be improving bit by bit all the time. The doctor has reduced my steroid dose again and that's a good thing and the amount of time I'll be spending in hospital is set to reduce as well, instead of coming in every five weeks I'll be in every six weeks. By this time next year we reckon we could stretch that out to nine weeks. It's all good news so staying positive in my head is important and worrying about going backwards is pointless, as for where the pain is gone, I hope some big banker or bondholder has it instead.

Back again

I'm back on my blog and back in the hospital, my city residence as I like to call it. I haven't written anything for ages 'coz my laptop has been on the blink and shuts down randomly and if I'm half way through something I lose the lot.

The hospital is a bit crazy today, it's changeover day and there's a lot of new faces around. It's not a problem for me but the new doctors on the wards are rushed off their feet. I turned up here just after nine and almost straight away had my line put in, but I'm still waiting for my immunoglobulin to turn up..I'm sure it's around here somewhere and everyone is too busy to get it.

I come in every five weeks now, that is five weeks at home and one week in here. I'm a lot stronger now and have hardly any drop off in power or co-ordination. It's not that long ago that I used to have to use my wheelchair to get in here for my treatment. I can walk a good distance now before my legs start giving in and on a good day I can run a bit, but that really does wreck me so I avoid it as much as I can. I can cycle quite a bit better now but not at any kind of pace, it's great to get out and get some air in my lungs.

When I think back on where I was last year and the year before I reckon I could put all this down as a life changing experience. It's certainly changed my perspective on things and what I've figured out is to live life and get out and meet people, visit places, have fun, go and see the things that you've always talked about seeing, and most of all don't get trapped inside the same four walls...there's a whole world out there and we don't get a second chance.