I seem to be suffering from brain overload today, a thousand thoughts about a thousand things and most with no connection to each other at all. It’s not new, it’s something I remember since my childhood, a desire to know why what and who has been a constant companion, which considering the fact I have a condition that there are no answers to, is either a good thing, or a total nightmare. Questions race around inside my head all the time and by the time I have looked into one, I have forgotten the ones I had originally and replaced them with a whole new range to choose from. Trying to write them all down is a real chore and all I do, is land up with pages and pages of scribble that is hard to read and a total muddle of subjects. I actually do own a Dictaphone, which I haven’t used since I was working, as somehow talking out loud to a small whirring tape just feels silly. If you have never used one, there is a major problem in finding the piece you actually want to hear again, it could be anywhere in a half hour long tape, turning what was meant to be a memory aid into a frustrating lump of plastic. I am totally sure that I have lost the really important questions, the ones that might actually make a difference to me, buried under those annoying niggles, like why do people post photo’s of landscapes on-line without telling you where they are taken? Do they actually really have scripts for Coronation Street, or do they just point the camera and hope? What are the chances of there being a mega eruption in Yellow Stone and how long would it take for the plant to die? What is the point of Ant and Dec? Who is it in Riyandh that is reading my blog, are they locals or English speakers living in Saudi Arabia? I guess you get the picture, just be glad you aren’t caught up in the middle of it, as it can get really crowded in there.
Adam came home last night looking wiped out, for once he actually looked as tired as I felt. I’m not sure why but I have noticed that I am a lot more tired recently, just as Adam said the other day, he often gets the feeling I am simply staying up because I want to be with him and if he wasn’t there I would have gone to bed much earlier. It is so hard to give in and just climb into bed when my body wants to, it isn’t as though life just disappears because my body can’t deal with it. I know I have often said just how hard it is and how I refuse to give in and sleep more, but there is going to be a point when the choice will be removed when there will be no options left. It is something I have found myself thinking about a lot, something I am sure is showing in the subjects I have chosen to write about in the past month or so, how do you know, when is that point and how do you deal with, not just for sleep, but for activity, rest, pain and all the other things that make up my life. Clearly I know that these points are starting to appear, I am not saying that I am there right this second, but they are getting closer, there are changes ahead of me and not years away, more like weeks or maybe months.
I have been aware of everything slowing down and everything getting just that bit harder, even if it is just fetching a glass of coke from the kitchen, nothing feels as simple or as easy as it was this time, six months ago, everything has changed in that time. I woke last night at around 2am, I was lying there not with my eyes open as I hadn’t managed to get that far, all I was aware of was the fact that my entire body felt like it was vibrating from within. The other day I said that my hands had a sensation like there was something alive just below my skin, more than just a tingle, but not pins and needles, well last night my entire body was like that. I lay there with what I think is best described as similar to the sensation we all get occasionally were we feel without touching it or looking for it, our own pulse, this wasn’t my pulse it was much faster and it was everywhere. My diaphragm and lungs felt solid and each breath was shallow and slow, the only way to keep it from turning to pain, experience at least in that area made it easier to deal with. From my toes to my head there was a this rushing, pulsing, vibrating sensation, but I was still too deeply asleep to open my eyes and even look at the clock, I had to force myself to open my eyes, as I thought if I did it would feel different, that I might just be dreaming it. It made no difference at all, I opened my eyes, saw it was 2 am and I felt exactly the same, my whole body felt as though I couldn’t move it, but I could, I checked, but it didn’t change the sensations at all. I even forced myself to sit up with the idea that I was possibly putting pressure on a nerve group in my spine or neck, nothing changed.
It didn’t take me long after I lay back down to go back to sleep, I woke again at 6am for a second, felt everything was fine and slept again. Right now, yes it is there, but as a background feeling, not driving me nuts or making me feel that it has to end, it’s just there. Last night was far from the first time, usually, I feel it the most either during the day when I go for a lie-down or as I am falling asleep at a lower level. Last night is the first time it was intense enough to actually wake me and something I had never considered would ever be anything other than background, now well who knows, clearly it has the ability to do much more than I ever thought possible. Another thing on my ever growing wait and see list in itself it may not appear as anything other than something annoying with the possibility of escalating to painful, but it does show that every single nerve in my body is now involved. It is only 11:30 and just like yesterday I am already exhausted, at least I have a slight excuse as I have just brought the shopping in and sorted out all the frozen and fridge food, the rest is waiting for Adam when he gets home. It is now a month since I bought any cigarettes, I am still smoking about 10 real cigarettes a day and using my e-cig the rest of the time. I was surprised that Adam hadn’t noticed, well hadn’t said anything, but when I pointed it out to him last night, he said he was very aware as the house smells different. I have to take his word for that as I have only noticed it once, the other morning I woke early and I honestly could tell there was a difference. I have to say I am both shocked and actually pleased that I am making the transition with so much ease, I still have no intention of stopping, as I really do need to go over to the cheapest option, with the occasional luxury of the real thing, but it’s one small thing to pat myself on the back for.
Please read my blog from 2 years ago today – 10/06/12 – Somethings just bug you
Throughout the day I receive comments on my daily post in this blog spot, those comments arrive through twitter and here on the blog. I occasionally find myself worrying when comments are slow to appear, as I then become unsure about the subject I have chosen for that day. What I am doing here is writing about my MS, I don’t actually know if anyone out there in this enormous world……