I have had a rather back to front start to my day today, I don’t know why but I found myself doing things in all the wrong order but for some reason, it felt right and did it really matter? I know I have said so many times that routine is so important, but I doubt that switching the order of what I do on my PC is really a violation of that rule, just a sign that my nutty brain is in one of it’s not working absolutely correctly days. I honestly found myself jumping from one thing to another forgetting all the things in between until it suddenly hit me and I stopped and double checked, to find that I hadn’t written my blog, at this second I just wish I knew what I thought I had written about, well it would make this all move a lot faster if I did. Don’t get me wrong I’m not getting fed up writing, I have a funny feeling that that will never happen, but I would be nice to actually know what I am going to write about as I honestly don’t know any more today than I do any other day, the words just keep appearing.
I have been trying to work out something now for about a year, I seem to have developed a strange talent that I don’t understand at all, it has to do with the relaxation process that I use and have spoken about several times. It has to do with telling each part of your body to go to sleep working from your toes upwards, I think I did mention before that I have managed to get it down to the point that I can start at my toes and often be asleep while still working on my legs, plus that I could feel the change in each part of me as I work through it. I have also written many times that when I lie down, the sensations in my ribcage is as though my intercostal muscles are tightening and that a weight is pressing down on me, what I haven’t mentioned is this, it isn’t just my ribcage. Without even using my relaxation system whenever I lie down now, ready to sleep or not, almost my entire body now reacts to the fact I am lying down. It is as though they can’t wait for my mind to sleep, they will head off there all on their own, one by one going somewhat numb, or they stop sending me messages as to where they are. For example, I might know that my feet are about 6 inches apart, but suddenly it will feel as though they are crossed, or that one of my legs is bent, no longer touching the bed at all, but I haven’t moved. The same thing is happening to my arms, but it isn’t just their location I loose, they develop an odd sensation of a mix between numb and tingling, along with being extremely heavy, too heavy to move at all. The mild spasms I wrote about yesterday are also part of shutdown, at night of course when they start I don’t move, they just hold on as though the muscle is slightly ridged although I don’t believe they are, that is how they eventually feel. The oddest one is one I mentioned several months ago as it really is an odd one, all the muscles in my face have learned to join in this shutdown, they though start to feel as though they are going cold and slipping off my face. MS can produce any sensation that it pleases to and although sensations aren’t always painful they can be extremely disturbing and often maddening, like the itch that doesn’t ease regardless how hard you scratch, even to the point of drawing blood.
As I said this started about a year ago, at first it was occasional and usually just one part of me, as time went on it gradually started to spreading, the longer I lay there awake the more of my body it took over. Now when I lie down it starts within a few minutes and it happens all over me at the same time, until recently I really thought it had something to do totally with lying down as I never felt it during the day, but I had missed out one thing, I never really sit motionless during the day. Part of the reason for that is that I have a constant twitch in my spine, I lost my core stability a long time ago, it isn’t really a twitch but that is how it looks. From time to time it will calm down and it will give me some peace, I can stop it by wedging myself with cushions when I am sat on the settee, just as I did for the interview a couple of weeks ago. Normally when I sit on the settee, I spend much of my time leaning forwards as it makes it easier to breathe, but even then my spine goes nuts again. When I am watching TV, I will have my e-cig in my hand and I will be playing with it, or I will be rubbing a finger crossed one of my nails, I never really stop and not move at all. The same goes for sitting here, if I stop typing I start fidgeting in some way or another, I actually had become aware that I was fidgeting far more than I ever used to, I put it down to the fact I can no longer knit or do embroidery as I used to whenever I had spare time. The other day I actually did stop dead, I sat here with my hands over the keyboard but doing nothing at all, within the same amount of time as when I am lying down, everything went into what I now call my ‘shut down mode’. Just as I do every night I felt my body heading off, everything getting heavy and tingling or numb, it was identical and I remembered feeling it sat here before several times. Over the last few days I have tested it, here at my PC, sat on the settee and in bed, if I stop doing anything and I have no physical distraction, my body goes straight into ‘shut down mode’, like a screen saver, it shuts everything that isn’t being used.
Somewhere inside of me I am sure I knew what was going on, why else do I never stop and if I do, I do things like pushing a nail into one of my fingers or nipping my tongue, sending a message of mild pain that is enough to stop me shutting down. As I said earlier, sensations can be distressing and maddening, ‘shut down mode’ is both and I am sure that my distractions are all about avoiding another round of something that is welcome when I go to sleep as I now see it as part of how my body does shut down, but to find it doing the same when you are awake just isn’t right. To have gone in one year from the odd madness in one small area or another before going to sleep, to being the chosen reaction to not moving is worrying, imagination can take it much further and unfortunately, my imagination is just too good at times.
Please read my blog from 2 years ago today – 07/09/12 – Pain Relief Update
A few weeks ago I wrote about a test I was trying with a new cushion and pressure socks to see if I could get some relief from the pains I have in my legs, I hadn’t forgotten to update you I just wanted to give it a bit more time to see what the results really were. The pressure socks do seem to have had a positive result and I am finding the pain in my lower legs has greatly……