I am not going to say this too loudly but…..I think my bronchitis is going away. I slept again last night with the top of the bed raised by the elevator and this morning I woke again without a painful back and able to breathe, after yesterday’s start it is just wonderful. It really is madness where you wake one day feeling as though there is no air available and the next on the most occasional cough and one that I wouldn’t even bother normally mentioning, life is really mad at times. I do now think I have found the cure for my back pain, not to sleep with the mattress raised all the time but to keep changing it, that way the pressure points change nightly rather than constant pressure in just one place. I never thought that I would sleep for 11 hours per night or that I would have to find myself, ways of not causing myself pain, but I guess it is just one of those problems that no one thinks about or warns you about, now there is an ever growing list! I know all to well that our bodies weren’t designed for doing little other than sitting and lying all the time, but I never thought that it could really cause so many painful issues.

I know I haven’t really written much in the last few days about how I am now, other than my cough, but sometimes it just feels as though I have nothing else to say and I have a need to move away from it all. It is so hard to find a true escape now, with my other hobby of playing complex PC games now gone, time away from just living in pain is now hared to find. In the past year I know that I have stepped down a long way, I don’t need to read back to know that, as I no longer have any time where I am pain-free or even pain so mild that I can truly ignore it. New areas have joined in and I am now at the point where I would find it really hard to locate any part of me that hasn’t caused me significant pain in the last week, never mind the last year. I can see now just how easy it would be to give up, there is a temptation to phone the doctor and insist on a meds rise, one that would let me just lie around like a brainless zombie. I never totally understood those I saw on TV who’s illness had taken them to that point where they gave up, a place where they had withdrawn from the life almost totally, just lying in bed isolated out of choice and long before they really had no other options. Now though I think I have a better picture of what could really cause that reaction.

Don’t get me wrong I am by no means ready to give up, I have just found that point where understanding, of others, has appeared, as I can now really feel that future as a possibility. It’s hard to explain something that you have just yourself glimpsed, being in constant never ending pain, that only ever changes in intensity and never leaves is tough, not because the pain itself is hard to handle, but because it wears you down in ways you never thought anything could. I have always thought myself a strong person and never once thought that something would get the better of me. It doesn’t matter what life has thrown at me and it has thrown a lot, I have always been able to see the future as somewhere things get better, I can’t see that same future any longer. It’s a very small statement but it’s one that changes everything and there is no way of fighting what is a fact, I am not going to get better than I am at this second, as there hasn’t been even one day in the past year that I felt better than the day before. I hinted at this yesterday when I said my flares have become rarer but the progression has got worse, what makes the mental shift I don’t know, but it happened.

The future isn’t rosy and I have known that for many years, the change is subtle but enough to make me see more clearly what lies ahead. I guess it is like everything else, we think we know what is ahead but it’s just not what you expect when you get there. My body is forcing me into once again finding a new way to live, into adapting to my limitations as they are, as they aren’t going to get better. The problem is I can’t see how to adapt past where I am, other than to do what I don’t want to, give into what it tells me to do. I know my muscles are getting weaker and weaker, just holding my arms at the level to type is getting harder and harder, I have to stop several times in just one sentence, not to just reread and think about what I am saying, but because my muscles need to rest, they just can’t keep going. All to often I find myself just sitting here, staring at the screen with everything ready in my head, but unable to put it down in words just because I can’t make my arms do anything and it’s not just my arms.

My body is slowing down on me, just as my brain is, where the point is that they stop me from doing anything at all, well who knows, but I do now understand exactly how it happens. The question is, is that knowledge a good thing or a bad thing? I suppose the answer to that is in how I handle it myself. I am not ready to give in, yes occasionally, the odd day here and there, well they exist and I know it, but overall I am not ready to let this thing take over, it’s just a daily process of making what I can out of I have. For now it is a mindset change, it’s something I have to make myself comfortable with and I think that is the hardest bit of all, I have to start working on finding a new meaning to the future as unless a total cure appears tomorrow, the future just isn’t a place where things get better any longer.

Please read my blog from 2 years ago today – 08/03/12 – Flare Day 3

I had little sleep again last night. Trying to sleep was equally draining as trying to find a position to lie in, but it made me more determined to keep documenting the process. It is one of those facts of life that once a pain has gone you really don’t remember exactly how bad it was or the exact places it was in. Think of the worst accident or pain you have ever had, I bet you can’t really remember it anything like as clearly as it was felt at the time. Ask any woman who has had a baby, she…..