I lay down last night with nothing in my head other than to simply go to sleep, I was so tired and the muscles in my limbs had been screaming at me all evening, sometimes I am actually grateful that I no longer have taut stomach muscles, as it is only the muscles I put to constant use that ever ache like that. It always takes me a couple of minutes to relax and let my body settle on the mattress, even then I know that isn’t the end of my day, it takes more time to locate those parts of me that haven’t truly given in for the day, those small muscles in my neck and shoulders that are so taut that I don’t even know they are until everything around them has totally collapsed. Suddenly my brain snapped back into actions as I could feel something odd, I had gone from mentally flat to alert in a flash, anything new always catches me that way, but I have learned the art of just bringing my mind back to action whilst my body slips further into sleep mode. I waited to see if I felt it again and it didn’t disappoint, but this time, it wasn’t vague and odd, this time, it was alive. I was sensing it from the back of my body but it was clearly inside my left ribcage, inside or out of my lung I wasn’t so sure, it was just how I would imagine it would feel inside a cloud when a lightening storm is building, the electricity circling and sparking, building up to the point where a bolt flies to ground. There was no bolt though, just this mix of tingling, sharpness and pain, but not bad enough that I would at any other time even pay attention to. At the same time, my normal sensation of a lead-lined waistcoat had settled on my chest and my chest was tightening as it so often does these days when I go to bed. It was so odd and so fascinating that I didn’t want to move, I was scared if I did, that it would all stop and I wanted time to get to know it and possibly work out what it was and more importantly, why?
You would think that after 30 plus years of living with odd one off’s and constant bizarreness that I would actually by now be doing the total opposite of last night, that I would have just moved to disrupt it, put an end to it and just go to sleep, but I can’t. It doesn’t matter what my body does, I have to still study it, I might not get any answers, as I didn’t last night other than the obvious nerves sparking, but I can’t just let it pass, I have to keep trying to work it all out. At this very second all the surface skin on both of my arms, from shoulder to wrist is burning, not painfully, but like I had been outside yesterday in the sun, for just that tiny bit too long. I wasn’t outside yesterday and I haven’t had sunburn for at least 20 years, yes I know that is a nerve sensation, but I still want to know, where is it worst? Which part of me started it? Why won’t it go away? Why can’t it be soothed by cold water or creams? If they work on sunburn why don’t they work on this? Just questions, more questions and still more of them, 30 odd years of questions without any true answer other than what has become the doctors fall back, it’s your MS, but that isn’t an answer, it’s a statement.
Listening to my body is a double edged sword, yes I have to, if not at this second, but I will have to, just as I have proved in the last few weeks, I had to listen despite trying to ignore the important things. It’s a double edged sword not because of that, but because it is both fascinating and frightening at the same time, hence the questions. I know without a doubt that if 20 people had that same experience I did last night that at about a quarter of them would now be dreading through the internet looking for the cause, convinced there is something serious wrong with their lungs and 10% of those would be talking to a doctor very soon. Even screwed up bodies occasionally get something wrong with them other than what is screwing them up, but people like me aren’t allowed to think that way, we just have to lie there and work it out, calling a doctor over every mad feeling would require a personal doctor sat here to answer a question every few minutes. When you listen all the time you discover a million weird or odd things, none more important than an itchy piece of skin, but they can still concern us, confuse us and occasionally totally scare the hell out of us. No, I wasn’t scared by last night, I am just using it as an example. As an experiment I would suggest that you go and lie motionless, totally motionless in a dark room for an hour and listen to your body, no daydreaming, or story telling allowed, your mind has to focus just on your body. All of you, even those who are fit and healthy will feel something, it’s natural, but most of you will feel something you never noticed before.
I learned a long time ago to listen to my body all the time, not out of paranoia, but because I had to. I have to be aware of the fatigue levels in all of my muscles, what my energy levels are and where the most heightened sensations are, as for me they are usually the areas that easiest turn to pain. I need to know not the exact counted number, but if I am having more spasms than normal if I am then I know I will become exhausted sooner and I need to pace myself with more care, if I want to make the end of the day. I have to be aware of all those sensations and what they can do and what I was doing when it started, just in case I have found a trigger. I can’t ignore my body totally ever, my concentration on it changes, drifts and separates just as my concentration does with everything, but part of me, is always listening, always working out what might happen next. I actually can’t fully remember a time anymore when how my body was, wasn’t the first thought of the day, or even the last, what was meant to be the vessel that cared for and carried me through life, has flipped places and my entire life is now spent caring for that vessel.
Please read my blog from 2 years ago today – 13/07/12 – Awkward Invitation
I have started out on a new adventure and I’m actually looking forward to this encounter with Facebook far more than my personal page which I still 6 months later never quite finished. Facebook never seem of an interest before I started to see writing now as part of me rather than a nice little hobby, stepping that line and taking it seriously has changed a lot. I still have the original Facebook…..
Love and hugs from Western New York in the US.