I have so often wished that there was a machine that could record your every thought, so all I had to do was listen back to it in the morning and type my blog from my oh so perfect words, written in my mind as I went to sleep. I think since I was a child I told myself stories to help me fall asleep, back then and for most of my life they were the type of story that we all think would be a major best seller if only we could write them. In the months since I started blogging, well clearly this has been my night time rambling and somehow they are always more eloquent and more interesting than what appears each morning. Simple, but perfectly formed and with such skill when it comes to my explanations and painting the picture of how I actually feel, then morning arrives and there is nothing, not one single word is remembered. I am not sure why but when I lie down during the day, I just lie there listening to my body, making mental notes of how or if something feels. That is the time I spend most, just trying to analyse what the days effect is and how it is different or similar to the day before. I do add in small adjustments at night, but that is more often part of the process of jotting down what is supposed to form the next days addition. Yes,I would really like to be sat here just copy typing through my already written epic, rather than sitting here digging and scrapping away all the mess that engulfs my nights work.
I know that the main thing I was working through was simple, how or what to do about this heat and how to write about it without boring everyone else and myself. It’s hard when one thing takes over your life, not just for you but for all those around you, no one want to talk through the same thing over and over again, especially when there isn’t a wonderful fix to the annoyance. So when I woke to find that the house was refreshingly cooler, I instantly forgave Adam for leaving all the windows open. I don’t mind one or two, but all of them is as daft to me as removing all the walls, once you are asleep the temperature could go in any direction and the house is victim to it. Yet even with the house being cooler than it has been for many days, I still wanted to pick up my stick, I am still lightheaded and still unsure if I can move anywhere in total safety, the stick just gives me that touch of reassurance. Time will tell if it makes the difference I am searching for.
If I am being completely honest it isn’t just being lightheaded that makes me grab for my stick, the pain in my legs has been increasing slowly. Yes it is my left that is yet again the worst, but both seem to burn from the sole of my foot to about a third of the way up, the most painful is my left which also hurts down from buttock to my knee. Often the pain will suddenly increase, that alone can make my jolt to one side or another. This isn’t new just worse, being a creature who sits perched on my chair at the back of the living room, moving somewhere only when I really have to, walking is a limited process, so pain when walking is a limited problem and not one I find myself talking about much. Like everyone who has MS or any mobility problems I find it easiest to move around in the morning, not for the first half hour after I wake. Then I am so stiff that I manage a great impression of an Egyptian mummy, but once loosened off, I find the closest I get to speed for any point of the day. I still walk in a fashion that shows clearly there is something wrong, but I am more comfortable thanks to pride, to walk around with my hand out ready to catch hold of anything should I fall. When alone I am happy to sit anywhere I happen to be when I need to, with Adam here I always make my destination without stopping. It is a pride that I always pay for later in the day, why I still insist on not letting him see my world without him, is totally stupid, but I guarantee there are millions out there being stupid right now.
As the day passes I get slower and slower, the shuffle slowly becomes my favorite action as lifting my feet from the floor is just to much. Why waste more energy when a shuffle will get me there just as well? I have for some reason no problem with anyone witnessing my shuffle, probably because when it starts I have no way of stopping it, but they still won’t see me stopping and starting. By midday my muscles are locked and painful, showing the classic MS gait, frequently there will be spasms although I am lucky enough that most happen when sitting, otherwise my time on the floor would be greater. To find that now I am in pain constantly and in a way that feel like those muscles could easily collapse, is more than just annoying, it is a sign that my mobility is once again getting worse. It started when we slowly lifted out of spring into summer and long before the temperatures that knocked me out did, as easy as it is to jump to conclusions what I really need to do is wait. Like everything else, time is the real test and the only thing that will give me the truth, summer or progression?