There is a duck in the room.

My legs are bad today, Adam noticed it on Friday as he asked if I was OK as I seemed to be more wobbly, his polite way of describing what feels to me as a good imitation of a duck. I am often like that late in the evening. I just noticed what I wrote there, “late in the evening”, otherwise known as just after 7:30pm. lol Anyway as I get tireder and towards my bed time, my walking get stiffer and more painful, as if my legs are just telling the world they have done all they can for today. Both yesterday and this morning I have already noticed that I am not walking as well as I normally would at the start end of the day. It is crazy that without you actually intentionally changing anything, you can go from taking reasonably normal steps, to shuffling along in anything other than a straight line, with your knees almost locked. When I was well I never thought of looking for differences from the awake and energetic me to the tired and ready to go to bed me. Try as I might, I can’t actually remember it that well, but I can find no memory of there being any difference. Now, well it is normally like chalk and cheese, yet today I am already into the shuffle stage and it’s not yet lunchtime.

I don’t suppose when we are so called fit, that we do bother to make even mental notes as to what happens to ourselves each day. Although I know that what I am building here is a great narrative to my illness, it would have had a greater value if I had started it closer to my healthy years. If I had had even just a one pager saying how each part of me reacted to the normal day, how I felt and how things like muscle tone and any aches and pains effected me, well it would give a fuller picture of what is happening. Wishes and dreams don’t work on the past, unfortunately.

Just sitting here I am having spasms and aches in my calf muscles, I am over aware might be the best way of putting it, this isn’t background it is alive and getting to me. I have been keeping silent about it as my legs had settled down recently, I didn’t want to write to much about it, tempting fate if you like. Well fate clearly had more pain lined up and it has arrived already. Unless you yourself have a chronic illness it is hard to understand how symptoms keep changing, I know that before I was ill I thought that it was a case of something starting and then over time just getting worse and worse, for example I never thought that I could loose the use of a limb and then get it back again. I thought once it was gone that was the end of it, so just like my legs I thought the pain would be there all the time, everyday doing nothing like getting worse. Well it’s not like that at all, things do settle down and fade in their intensity, no they don’t go away the just sit there quietly, then suddenly announce themselves, worse than they had been before. Believe me I am so glad that they work that way.

You live in the hope that things will be better tomorrow than they were today or yesterday, usually they aren’t but the great thing is that you very soon forget and you just move on to the next day. It can feel a little like your entire life is all drifting from one thing to another, from one set of traumas to a spell of relief were the trauma is forgotten, then before you know it, it all starts again. Some how my life has lost all the planning and goals for the future, as today is the only day you can trust to be as it is. The scary thing is, it some how doesn’t actually matter any longer. It’s not that I have stopped achieving, or given up on what I want, what I have accepted now is any idea of saying what day or time I will do any of it, it will happen when it does and not before.