I woke with that unmistakable urge to run, something that isn’t possible and is becoming more of an issue than I expected. It doesn’t matter how I try to control my fluid intake each evening, or how I have been trying to retrain my bladder, I am still having nights where making it through to the next morning, is impossible. 6:30 am, not too early I suppose, but still early. The time didn’t matter as much as that desire telling me to move quickly, and to reach the bathroom, as soon as possible. I have developed the art of putting on my dressing gown without shifting off the side of the bed. It’s a huge advantage, as that motion of standing isn’t too safe, not just because of the falling risk, but it has a clear bladder release issue attached too. Once I have my gown on, I simply slide across to my chair, and out of the room as fast as I can. I’ve learned not to go too fast, speed in the dark isn’t advised. Door jams have an amazing art of suddenly, jumping out, in front of you, when you least expect it. I made it, no issues what so ever until the final second, but even then, I was at least in the right location. I don’t think there is a greater pleasure than relieving an overfull bladder, especially since I moved into my chair. Sitting there was the purest pleasure, and so was the thought of heading into the kitchen for a quiet cigarette. Just before I stood up, I suddenly felt wrong, totally wrong. I’ve felt light headed before, that was nothing new, but this was slightly different, somehow it was one sided, just on my right side. All my limbs were also tingling and felt numb, I just didn’t feel right, and I still had to stand, walk three steps, before I could sit in my chair. To say I was reluctant to do this, is putting it mildly, I had felt fine getting there, but suddenly I felt wrong and I didn’t like it, but all I could think of was getting out of there and into the kitchen.

Lately, I have been more and more aware of that feeling as though my body is closing down, in the past I couldn’t find any other way of describing it, it was exactly how my body feels when I am lying in bed ready to go to sleep. Just occasionally, it is just my hands or my legs that are filled with an intense tingling and numbness, but all too often, it is my entire body. If you have ever had a general anesthetic then you might just remember that odd sensation just before you go under. There is a ringing sound in your head and every part of your body is flooded with this overpowering sensation, somehow more alive than normal, while at the same time, your totally aware it is all closing down. There is a sudden flush of this intense tingling and you’re gone. Now thought, I’m not gone, I am stuck in that moment. At times, I have also described it as though my skin isn’t receiving enough oxygen. Just the same way that you might feel if you have lost circulation to a limb, as it restores itself, it is flushed with sensations, that is almost exactly how it can feel. It’s not really unpleasant, but neither is it something you would want to feel forever. I have noticed for a long time that it can appear if I sit still, or isolated in a single limb if I don’t move it for a while. Things have been changing over the last few months, I have discovered that all I need to do is close my eyes for a few seconds and sit still, then bang, it appears and builds and builds, only vanishing when I move again.

I was intrigued with my discovery and I admit that I have been playing with it for a couple of months now. Starting and stopping it, trying to understand what it might be and what is causing it, without much luck. Then a few night ago, I was sat on the settee as I often am, hunched over my knees, watching the TV and gently swaying from side to side. What made me do it, I’m not sure, but I decided to stop myself from swaying. I rarely sit still, partly because I have a stupid nerve that fires painlessly and makes my upper half jolt back and forwards, or twitch abruptly to one side. Somewhere along the line, I had added in the swaying and did it totally without thought. So I stopped. Instantly, there was that damned sensation. As soon as I started to sway, it was gone, stop and it was back. If I took a drink or a draw on my E-cig, it stopped, but when I stopped moving, it came back. This discovery has been receiving my attention ever since. I don’t think there has been a waking hour recently that I haven’t been able to trigger, or stop it, not quite at will, more at command. It became clearer and clearer that I am, in fact, never without it, unless I am moving in some way. The more I played the more I discovered that I actually avoid sitting still. It is something I just don’t do, without conscious thought. I am almost constantly doing something, if not physically move around, I am typing, smoking, drinking, vaping or swaying. After years of doing it, I suddenly understood why I sway, I do it, to stop those sensations, something all the different medications, have never even touched.

So there I was sat on the loo, dreading getting up. For some reason, the bathroom has been the sight of some of my most spectacular falls, so it isn’t exactly my favourite room in the house. But, I couldn’t stay there, I had to stand up and move. As I did so, it all vanished. I made it to the kitchen, lit a cigarette and relaxed into my chair to enjoy it. Once I had finished it, I decided to sit for a few moments, just quietly there in the dark, then suddenly, I was hit by it again. I don’t know why, but that was the second that it all fell into place, that all those hours of playing with it actually formed a final conclusion. It has to be there all the time, all of it, not just when I’m not moving, the movement is a distraction, not a cure. At times, I have clearly felt it when I have been moving, but always just in small area’s. It might be my lips, or the side of my temple, or even my foot, if I didn’t have a strong enough distraction, it would remind me it was there, but let my body move and it stops, and what better way of making all your body, from my feet to the top of my head, than swaying.

They aren’t horrendous sensations or anything, but they aren’t always pleasant either. Clearly my brain had found the solution, long before I even knew that I had a problem. I have been doing this for years, but it is only recently that it has become more intense and faster in its action, that I started to question it. I think it was a couple of months ago that I spotted it in my hands, in the gaps in my thoughts when I was typing. I remember right that they were shutting down, as soon as I rested them. Well, that is now a daily event and guess what, I have now caught myself starting to sway in those gaps as well. Our bodies and even more so our brains are amazing places. I’ve known that for a long time, but the longer I live with this mad condition, the more I realise just how true that is. I still don’t totally understand the cause, other than it clearly has something to do with my nervous system being totally shot. That is pretty clear, why else would every nerve in my body be experiencing sensations, that don’t have a hard and fast explanation. I can only guess that tingling is one of the simpler sensations to create, blindly like this. What I do know, is that the longer I don’t move, that tingling grows and is normally joined with numbness and occasionally followed by pain. Almost as though there is some kind of hierarchy to sensations. What am I going to discover next, that my brain is already sitting here smugly holding onto, just waiting for the opportunity to shock me with?

Please read my blog from 2 years ago today – 04/11/2013 – Just a little control please

So many days just seem to bleed into another, nothing to define them from each other once you are no longer working. I woke this morning as I do quite often totally lost as to which day it was or if I needed to wake Adam so that he wasn’t late for work, then suddenly…..