There are things that unless you can actually connect your brains, that are so hard to put into words and try as you might to explain or describe, remain stubbornly impossible to understand. The sharing of sensations, both physical and mental are a constant stumbling point for me, I can’t be 100% sure that what and the way I have written something has conveyed not just the individual sections, but also the combined and total effect. Yes there have been loads of occasions when I have had a comment or tweet, telling me that I have, but there is always still that element of doubt. Trust me to have set out on a project that will streatch me to my linguistic and knowledge limits. I have through out my blog made a point of trying to get across everything in a manner that even someone who is fit and healthy should be able to imagine and feel for themselves, if in a minor fashion but to give you all a glimpse. So when last night I decided that I wanted to try and remember everything about how I felt at the end of a day, when I am at my worst, I eventually realised that it might not be possible as so much goes on and so many different things are happening, I would be bound to miss something. Writing it all down wouldn’t work, as that would interrupt everything and change it, so with that in mind, I am gong to give it my best shot.
I have a nap every afternoon for usually around 2 hours, I do so so that I can be awake enough to enjoy some time with Adam everyday, without that nap I would probably be in my bad by 7pm, so I am taking my evening as starting when I get out of my bed. Not surprisingly I don’t wake up filled with life but I do wake with some degree of refreshment, I also always wake up hungry, it’s an over powering hunger that I don’t feel at other time of day, so that is when I normally have my dinner and eat it while I am sorting out the tweets which I missed when asleep. This point in the day is when I actually start my wind down toward the end of the day, there is no writing and everything is set so I relax. Sitting is at a low point, and there is always sharp pain not so much in my backside but across the backs of my thighs, and at the tip of my coxis. The nerves in my feet are already starting their pins and needles game, tingling not just as they used to on the soles,but also across the top, running into the numbness around my ankles and up the lower section of both legs. It isn’t painful but it is more annoying than anything else, this is the time of day that small groups of spasms start, again they don’t really hurt as they used to but I am aware of the muscles cramping and turning hard before letting ago again. The worst pain in my legs is always the front of my calves which both feel constantly as though a razor is removing the top layers of my skin, and my left thigh has a shard of glass digging into the outer side of it. The level of all these things is still what I would call background, yes they are there but they are always there, and a bit like annoying lift music, you learn to switch off your reaction to it and to put it where it belongs, there but not reacted to. It is at this time of day that my walking start to go and there is no chance of me walking anywhere without it being obvious that is something wrong. The ligament in the backs of my leg seem to tighten and become stiff, in the morning they seem to vary a lot, but as the day goes on they always behave in the same way. Although it looks bad the stiffened legs and dropped left foot is more annoying than painful, it’s not painless but bearable. If you are looking for pain in the lower half of my body then look to my thighs and pelvis area, every step I take cause pain somewhere in that area, I think the changing position is due to my tendons but I can’t be sure.
From my waist up I will at the point in the day be having more and more problems with my dexterity, which in a funny way is a good thing, as it forces me off my PC. Typing and even using my mouse is painful, both hands are clearly telling me they have had enough for another day and I listen to them, so somewhere between 5pm and 6:45pm everything is switched off. Across my mid region I will have the normal feeling of pressure, a discomfort that makes me sit more upright or will force me to lean forward. I will also be twitching, a movement that has been with me now for about 8 years. There is some nerve in my spine area that sparks constantly unless I am lying down, when it can’t make me wobble and jerk. The hunching forward is also a way of stabilizing this and allows me to sit still, which when watching TV is a preferred choice.
My left arm is usually by then feeling useless, it will be numb and heavy, just hanging at my side while walking or if really bad I will be guarding it, holding it up across my body, often with my right hand holding. If Adam is home by now I have to talk, early on this isn’t to bad and I really enjoy having some conversation that actually isn’t typed. I will also by this time have moved my cushions so that I can sit on the settee, with him. The pain in my legs always get worse once I have made that move, instead of the pain at the top of my thighs, it will have moved up and is more centered on my backside. I will often be sat there massaging my hands and arms, as the pain from a days activity will need relieving, a massage doesn’t get rid of the pain but it helps.
For 2 hours I am sat watching TV and talking, and the above is the base line from which those 2 hours are built on. I am splitting this blog here and will write the remaining section tomorrow, sorry but my hands are getting rather sore and I am guessing I have about the same again to type before I have this topic complete.