I don’t really know where to start today, or even how to put into words what happened last night. I suspect that it started in many ways, just where my post ended yesterday, with me wound up about my morning spent on the phone and the internet still not working properly. When it crashed out about 3 pm, my panic button had been pressed and somehow, I had to face yet another call. Don’t worry, I’m not going into what happened on the phone, just to say, that I was on the edge all the way through. Actually, I do have to tell you one thing they said to me, as I couldn’t believe what they suggested. I was told to unplug the cable that ran from the telephone socket to my router, and to leave it unplugged for three days. Then reconnect and see if the problem was still there. That has to be the most stupid thing I have ever heard. When they said that, I did flip, as I said yesterday, I don’t like being treated as an idiot. The call ended at around 4:30 and when Adam came home at just after five, I was still in a state and the tears flowed freely as I went over what had happened that afternoon.

The pressure on me just seems to have grown and grown in the last few days. As will be clear to those who have read my previous posts, this is not the best situation for me to be in, but it is no one’s fault, just a collection of situations that have snowballed to this point. At first, once I had my tears under control, I thought everything was settled for the day, there was no more we could do, other than just enjoy our evening. I couldn’t help but notice, that my body was still reacting. I had far more tremors and twitches than normal, but they were as always harmless. By the time I was heading for bed, I knew that I was in a bit of a mess, and my final trip to the bathroom proved it. Even with my beautiful new grab rails, I had trouble making my way from my wheelchair to the loo. My legs weren’t just weak, they really were having problems holding me at all. Even my arms when I had to reach from one bar to the next, were flicking and flying around in an alarming manner. When I eventually sat down again, I was totally unable to keep my limbs still, even when I relaxed as far as I could while sitting on a toilet, they didn’t listen to me at all, they just continued to twitch and jump in an alarming fashion.

Once I was finally in the bedroom, I found myself actually unable to get out of my wheelchair. My limbs just felt so tired and useless, that I feared that if I tried to stand, I would land up face down on the floor. I had no choice other than to sit there and wait for Adam to join me, and to help me get to my feet. We stood for a couple of minutes, with Adam taking my weight completely. It was a though he was giving me his strength, in the only way that he could. We cuddle each other frequently, but this was something else and I don’t think either of us wanted to separate. When we did, he placed me gently onto the edge of the bed and bent down to take off my socks, before once again holding me and giving me just what I needed at that moment, his reassurance about life. I thought that was my day over, that all I had to do was put in my earplugs, lie down and find the sleep that always takes away anything that day had brought.

I woke, it was just after midnight and I needed desperately to go to the loo, but there was something wrong, something that just told me that my world had changed. Normally, when I wake, even if it to the sound of the alarm, I wake exactly in the position, that I went to sleep in. I sleep on my back, with my hair spread out above me and down behind the headboard. When your hair is as long as mine, it is the only place to put it, where it won’t get tangled up over night, but it also the sign that proves what I say, I don’t move a muscle once I’m asleep. When I woke, not only was some of my hair lying over one side of me, I had pulled what is meant to be Adams side of the duvet, clear of his side of the bed, and I was lying, still on my back, but on top of it. It wasn’t until I tried to move, that I started to realise just how much trouble I was really in. At first, none of my limbs were really responding,they were moving, just not always in the way that I wanted. Every movement I tried to make, was accompanied by them adding in extra movements I never asked for at all. It took me a couple of minutes to find the way to make my body do what I wanted, and to find my way to a seated position on the edge of the bed. I instinctively knew that standing wasn’t an option, so I reached for my dressing gown and put it on while seated, before pulling myself towards my chair and sliding myself into it.

Controlling my chair was more than a little interesting. The direct messages were successful, but the second I gave one arm freedom from command, it flicked and ticked until I needed it again. Throughout the entire journey, not one part of me was still. From head to toe, I was in motion and there was no way of finding stillness. Every second I was out of bed, not once did I have true control of my own body. It felt like I was having some sort of fit, I was there inside a body, that clearly didn’t belong to me any longer. Most interesting was when I went to the kitchen to try and have a cigarette. It was there, that I was suddenly on familiar ground. This had happened before, milder, but I recognised it, as it was the flailing limbs and inability to manage something as simple as flicking the ash, that triggered my recent post about tremors. Last night, though, was it’s much bigger brother, so much bigger, that I have to admit, in itself, it scared me. The cherry on the cake, was when I started making involuntary sounds from my voice box. It wasn’t me clearing my throat or anything like that, these were clear sounds, some quite, some louder, but all without my actually doing anything. I have never felt that feeling before, of actually having no control over what my body was doing. To date, I have always been able to relax my way out of individual limbs tremor, last night, I had no control what so ever. Until it happens to you, it’s hard to imagine just how distressing it is in itself. Like most people, I have seen my hands weaving their way incorrectly when drunk, but even when drunk, you have more control than you think. Seeing and feeling them jerking and twitching while you try to correct their movement, is beyond any true description I can give.

I have no idea what my body was doing when I was asleep. Whatever it was, it didn’t end at midnight. Again when I woke a 6 am, again to go to the loo, and then again just after 8 when I got up, the bed was in disarray. It appeared each time, that even sleep wasn’t managing to bring peace to my body. It appears that I spent the entire night on the move and that is so abnormal, that I honestly can’t even remember the last time, even the duvet wasn’t close to where it was when I went to sleep. When I mentioned all this to Adam, he said that he had heard me making noises last night, not words just noises, but he didn’t come through as he thought I was just talking in my sleep, something I don’t normally do. I’m glad that he didn’t come through either, I doubt the sight of me flaying about, would have done him any good. Even today has been a day of movement and motion, not as bad as yesterday, but not normal, not the way it should be. All I can do is hope, that it will settle, and finally, go away. I really don’t want this to be anywhere near, a new normal.

Please read my blog from 2 years ago today – 22/04/2014 – Nerve madness

It is strange how when your body can no longer give you the correct signals how it finds a new way of telling you what it either needs or must do. I have now for years had trouble with both my bladder and my bowels, luckily my bowels have never quite had the total disrespect for me that my bladder has as it’s way of telling me I need to empty it is to simply start leaking, effective but embarrassing. My bowels well although at times they have managed the same unsavoury trick, normally they are just that bit more discreet. You would think that somehow you would always know when either needed emptying, discomfort alone would be enough but that is a truly difficult thing to pick out amongst all the other sensations and pains that I get around my pelvic area, strangely I now get a feeling of pressure much higher…..