They say you shouldn’t speak too soon, guess what? I did! I published my post yesterday and within an hour I was once more struggling to keep going, my arms and legs were once more tight throughout and feeling as they were going to explode, in fact, I was feeling as though I was going to explode. I pushed through until just after 2pm and went to bed as I couldn’t even manage to click on one more item on a screen, I had to stop that very second and headed to my bed. Just like all last week, it took me a while to manage to relax, my arms somehow relaxed first and as I was working on the rest of me I became aware that they felt like lead, totally dead and useless. I didn’t move them I was to scared to as I had to get some sleep so I lay there, arms dead and legs slowly drifting into a relaxed state, but totally aware of the fact that I was still wound up and so tired that I no matter what my body did after, I had no choice but to give in and sleep. How long I slept I don’t know, but in all, I was in bed for 2 hours and when I woke my arms were still dead, well at least that was how they felt, I could move them and use them to pull on my clothes, but they felt dead, beyond fatigue. Fatigue is a muscular thing and yes all of the muscles were fatigued, but it was almost as though my nerves had found a way of joining in, they were sluggish in their actions and the only sensation they were returning was one of an amplified nothing. When I pinched myself I could feel it, but the nothing was bigger and more over powering than the pain, not like a limb that has lost circulations this was different, some things were similar, but there was more that was different to make it stand out above anything else. I have felt this a lot in the last few weeks, as you can see describing it is difficult as in many ways it is like trying to describe silence to someone who has never heard anything other than one sound. There is a known absence of life, even though there is function and feeling, both my arms and legs have all been falling into this state lately once I have been in bed for a while and it takes time for them to come back to anywhere near normal.

This morning when I got up I timed just how long it took for my arms and legs to feel like they would be of any use to anyone, it took about 15 minutes. I had all the time been using them, but they were acting without any of the feelings we usually get when we move a limb. It really hard to explain this in a way that doesn’t sound verging on the insane, but I could, for example, feel the keys on the keyboard as I touched them, but the sensations that goes with that action, the feelings we have that tell us our figures are moving, without having to look at them to be sure, were missing. Trust me it is as bizarre to live through as it sounds, by now you would think I would be used to all the screwy things that my body does, but it doesn’t matter how long you live with things like this, they still have the power to astound, confuse and even scare you. I learnt along time ago to not try and explain them vocally to others, over the years I got kind of fed up with people looking at me as though I was a lunatic, at least when I write them down, I can reread, rewrite and rethink, until it sounds about right and if I get it wrong, well I can’t see your face or have to deal once more with someone who is confused, or worse still is ridiculing me.

I have for years now used a relaxation technique that I was taught back in the 80’s, I lie there and I concentrate on each section of my body, bit by bit, I start with my toes and I consciously relax the muscles and tell them then to sleep, sending the order down through my body to the muscles I am working on, once relaxed I move upwards to the next section. Normally I am asleep by the time I reach my arms, often a lot sooner, I don’t know if I felt it from the start or if it is something I have somehow invented since, but when I send the command to go to sleep, I actually feel it travelling through me to my chosen destination, like a wave of sleep energy. I mention it because firstly it works really well and I would recommend that others try it, but also because it is that wave feeling, the feeling of it being a wave of energy, but not sent by me, that I feel when my arms and legs are shutting down on their own. I realised last night, I just hadn’t put the two together before, on those occasions when my body drains of energy and I simply can’t do anything else, it is the exact same sensation, expect I don’t pull the plug, it jumps out by itself. I have to say that given a choice between muscles that want to explode and muscles that just go to sleep on me, I would choose them going to sleep anytime.

I wish I understood what triggers all these sensations and actions, sometimes I know it is stress or something else that has happened, but for the most, I just have to get on with them. What I do now know about the muscle tightening episodes is they all start the same way, I thought I had it worked out in the middle of last week, but it was also the point when I raised my medications and they stopped for a few days, so yes I am wondering about my meds again, but because it happened yesterday I can say totally without a doubt they start in my right leg. In fact, I can be even more precise about it, they start in the thigh muscle of my right leg like it is at this very second the muscles just start to tighten and it spreads through me from there. No matter how many times I have tried to take a break it at this point, I have always failed. Not even using the relaxation technique works unless I go and lie down first, I have tired over and over to make it work when I am sitting up, but I always fail, which I am guessing is because my spine isn’t relaxed unless I am in bed.

With everything that is happening right now I am going to make one more guess, I think that there is an answer and that it is a simple one, I have new lesions forming on my spine. The never ending diaphragm spasm, or hug, it’s occasional partners in my upper ribcage and lower abdomen, the pains in my side, the increase in bowel and bladder problems, the continual tightening of muscles and a few other smaller things, all point to it. My progression in the last year has been marked and doesn’t seem to be slowing down, I don’t need a neuro to tell me this because it has been a long time coming and not unexpected in any way. For me, it is more of what next that bothers me, not why it has already done what it has and that is all they can ever tell you.

Please read my blog from 2 years ago today – 29/06/12 – How are you? 

It is going to be one of those days, I can see that already and it is only 10am. The District Nurse phoned to check I was OK and if I wanted her to come out and see me, I answered all her questions and said that I was fine, Sods Law they call it and I’m there again. I had been off the phone for maybe 15 mins and I started throwing up again, which was one of the reasons she called. The Doctor wasn’t happy about the fact I was sick on Saturday night and he didn’t think it was food poisoning and…..