This is a day that is going to be dominated by my legs, they have been screaming at me since I first woke. It is almost impossible without lying down to actually remove all weight from them, it doesn’t matter how I sit the pressure builds in my thighs and joins itself to my shins and calf’s. I have joked over the years with Adam about wanting new or no legs in preference to the ones I have, this is very much one of those days. It is strange but one of the things that does help a little is to use the foot massager, it is the massage that helps but keeping my legs moving even slowly, just running my feet slowly back and forward on the wooden cylinders. I suppose it is a constant mild repositioning of the pressure points, but it is distracting. Not long ago I would have found it really easy to do two things at the same time, now keeping my feet moving takes so much of my concentration that writing at the same time is a real challenge.
I had been planning all week that today was going to be the day that I was going to dye my hair, it hasn’t been done for several months, but sods law looks as though it is going to win again and my hair may get washed but that will be it. It is only 10:30 so I may be making a premature conclusion, the progress of the day will tell. Thursdays are strange days for me, when I was working I occasionally had that Wednesday feeling, hump day, but since the job went Thursday has taken over, and I am really not sure why. My weeks structure has remained the same thanks to Adam working, if I was on my own I think I truly would loose the point of having any daily structure, I can see it would be all to easy to just drift everyday with no need or desire to know which day it was.
I used to often think about what would happen if I didn’t have Adam with me and his support through all of this. I know there will be many out there who are in that position and I really don’t think I would manage on my own at all. The challenges of every day life is one thing but for me I know the hardest thing would be dealing with the outside world. The damage that has been done to my brain means that I don’t deal well with change and things not happening when they should. Just thinking about having strangers in and out of my home, doing things like cleaning and so on is distressing just as a thought, the reality would be horrific. I have said often that I need things to be constant, to know where everything is exactly, down to it’s position and direction. Dealing with someone who wasn’t here exactly when I expect them and them moving anything in my home without putting it back to within a millimeter of where I have put it, I really would go mad very quickly. It is hard to explain how distressing I find anything that isn’t just as it should be, to an outsider it would appear to be like an out of control OCD but it isn’t it is more than that. Change is highly distressing as it leaves me feeling lost and often terrified. In fact this is a silly example that has happened in the last few days.
As we are heading into winter I like to have the curtains shut before dark so that they help to hold the heat of the day in the house. At this point in the year it is important as I am trying not to put the heating on yet. Adam closes the curtains and I then go round finishing them off, if you can see no light around them then there are no gaps to let the cold in, simple. There is one curtain that really is a pain to manage and that is the bathroom one, on occasions it can take five minutes or more to get it just right. For the past week when I have got up in the morning I have found the curtain has moved and there are not just gaps but it is not tucked the way I left it. As the days past my tucking and tweaking increased, but in the morning there were the gaps again. It took me several days of going in there and feeling not just total frustration, but a strange combination of upset and fearful. I would look at the curtain in disbelief and felt like I was going to war with it, even tweaking it again in the knowledge it would soon be open. Last night I spent about 15 minutes removing the ornaments, twisting and weighing down all the edges I could as I replaced the ornaments again. Some pieces would shift while I was pulling and I would have to do them again, I even found tears on my face as I got angry as I couldn’t make it stay, but eventually I was convinced that I would win, and it would be just as I left it when I got up. This morning there is was again, moved, light and cold air, coming in round those horrid gaps again! So I asked Adam what seemed an equally mad question of was he moving the curtain, he was. When he had his shower late at night after I was asleep he had been opening the window, undoing all my tweaks and twists, and letting out all the precious hot air, then closing it badly again!
I know it is so silly to get wound up about a curtain, but if I can’t deal with a curtain, how would I deal with a stranger? Without Adam here to yes on occasions drive me mad, but mainly keep me on the level by working with my mad brain, I wouldn’t manage at all. For those of you out there managing on your own, well I salute you as I know I couldn’t do it.