Taking that step

I woke really early this morning, I mean really early, 3:15 am. For over a year, I have slept with both earplugs and an eye mask. For the first time in ages, they both failed me. I don’t know what time Adam came to bed last night, but I do know, something woke me and once awake, the urge to go to the toilet was overpowering. The plan was, go to the loo, have a cigarette and back to sleep, but like too many apparently good systems, I hadn’t factored in one rather large element, Adam. I did try to go back to sleep, for a full hour, but it was useless, my earplugs just weren’t strong enough to block out his snoring. Most of the time it isn’t a problem, but today, he was on a roll and determined to continue. Trust me, there is only so much you can take of anything, without just giving up. So here I am, not quite six in the morning and I am once more at my PC. To be fair, the last 20 minutes or so was spent running through the last year of my childhood that I spent in my Father’s home. I don’t have the slightest idea what triggered it, but the memories were there as big and as horrid, as ever. I suspect that we all have memories that we wish we didn’t. Ones that just like mine, choose their time carefully as to when they will appear, which always seems to be at a time, that no matter how intensely you work on changing the subject, how hard you try to relax back into the world of sleep, you simply can’t block them. How I landed up back in Aberdeen in that horrid little house that he rented until their divorce was through, I don’t honestly know. My last conscious thought, one that I chose rather than just appeared, was very different.

Last night, just as I had settled myself into my wheelchair so I could go to bed, I was overcome by a very odd, and somewhat disturbing feeling, that I have now had several times. I honestly can’t remember when I first felt it, several months ago, that is for certain. I haven’t written about it before, because of that disturbing element. It makes it so hard to describe, and means that on the odd occasion I have thought of putting it in here before, really put me off, but this time, I am going to try. The first time I felt it, it was centered on just one limb, but since then, it has varied between either one limb, right up to almost my entire body. No matter where or what it effects, it always appears suddenly, and always in what I would describe, as a wave that travels through me. Where ever it is, that wave as it travels, seems to strip the strength out of me. It is a little like someone has opened a plug at the lowest point and everything is, draining away, strength, sensations and even the feeling of life. Although it feels that way, I can still function, just in a diminished fashion. Last night as I said, I had just made it into my wheelchair when it hit, so clearly, I was going somewhere and I still had to get there.

I was at the far end of the living room, and despite what almost felt like a command to curl up on one side, I had to move. I was sat there, with my legs just hanging under the chair, still gently moving from the momentum, of releasing them from taking my weight, and I was perfectly content to just leave them there. Luckily, neither of them were needed, but I did need both arms, especially as my first move, was to turn myself through 45 degrees. My left arm just didn’t feel as though it had the strength, what it really wanted to do, was to pull itself up, so that it was tucked across the front of me, and to then let the hand fall limp. As I said, this is odd, as I don’t even know, how I knew that that was where it wanted to be. It was somewhat like a memory, a muscle memory if that makes sense. I needed it, to hang more downwards and to take the strain of turning the chair. It obeyed without a problem, but the turning process was slow and laboured, nothing like my normal smooth twist. The next move was the easy one, a straight push of about 16 feet, but it too was at a pace that was just laughable. With each push, I could still feel my limp legs swinging under the chair, like two much fater, but equally limp, pieces of spaghetti. Another 45 degrees, four limp pushes, another 45 degrees and two pushes out into the hall. It took about three times longer than normal and my entire body, even my mind, felt fuzzy and quite simply wrong. At the end of every push, my body was still screaming at me curl up, give up, stop, you can’t do this.

If I had stopped, well, yes, Adam would have come and fetched me, but I didn’t want fetching, I was still my normal pigheaded self. The bathroom was my goal, and I was going there alone. I had brushed my teeth at 8 pm, just an hour earlier, after I had used my steroid inhaler, apparently, it can cause mouth ulcers if you don’t. I had made it, my first achievement from my short list of todo’s just to get to my bed. With the door closed behind me, I sat there in my chair, my head slumped forwards and feeling as though I had been to the North Pole and back. Not because of the temperature, but if you have ever tried pushing a wheelchair on snow, my description will be totally understandable. The wave, that took my strength, and started giving orders, also leaves me feeling somewhat numb. Now out of sight of Adam and free of his offers to help, I just sat there. I knew I had things to do, but I was going to take 30 seconds just to sit and do nothing. My purpose of being in the bathroom, other than going to the toilet, was to clean my face and add my wish serum, the one that’s supposed to make me look younger. Sat sideways onto the sink, I took a deep breath and I reach out for the medicine cabinet, I reached over the sink, opened the door and fetched the wipes. As I settled back into my chair, I was suddenly aware, that my left arm and hand were where they had been screaming to be, curled up, limp and held up in front of me, tucked safely into my chest. I didn’t remember moving it at all. My inaction, that stationary 30 seconds, had let my arm and my left leg, to go totally numb and my arm now had a mild tremor. Everything was a struggle, including standing, which of course was something I had to do. It is moments like this, that are prompting my thoughts of adding in grab bars. I don’t need them all the time, but whenever I feel that weak, I land up wishing they were there. For now, I simply brace myself, one hand on each wall and take the few steps there and back, with care. Toileted, cleansed and creamed, I headed back into the snow to join Adam in the bedroom to say goodnight.

Like all sensations, they have no logic and I would brush it aside if it weren’t for a few things. Firstly, this odd desire to pull my limbs into me, secondly, the incredible weakness that comes with it, and thirdly, the numbness that engulphs me. The first time I felt it, I will be totally honest, I thought that I was having a stroke. If that is what it is, well I am having them from once every couple of weeks, up to three times in the same week. So, unlikely. It has to be part of my PRMS, some kind of intense sensation bomb, as intense is exactly how it feels. What triggers them? I don’t have the slightest idea. Why have they suddenly started? Exactly the same answer. What I do know, although I don’t know how long ago the first one was, it feels as though they are happening more frequently. Read back over the last six months and without a doubt, it is clear that my health has been on the move for a while. As I have also learned there are generally no answers to any of these things, just a case of learning, if possible, what not to do and what to do, when they hit. Now that I have done the most important thing, admitted to myself that something is happening, I hopefully will stand a chance of at least putting my mind at rest about them, if nothing else.


Please read my blog from 2 years ago today – 23/11/2013 – Colour past and future

Much to my surprise I managed to dye my hair without covering myself and the entire kitchen in purple dye. In fact it was really easy due to the fact I hadn’t dyed it for so long, there was nearly 2 inches of…..