I woke at midnight, I wasn’t sure the second I woke what was wrong I just knew something was and that it had broken my sleep abruptly. Then it happened again, I can say that as the second it did I knew that was it, that was what had disturbed me, something really hard to do these days. My lower legs both of them were in pain and not a spasm, this was different almost as though they were causing me pain just because they could. I lay there for a few seconds and as I often do when just lying there, I felt the same pain building in different parts of me, getting more intense and forcing me to move. I decided to take one of my booster tablets and head for the kitchen where I could sit for a few minutes and let the tablet take hold whilst having a cigarette, when I opened the door I was relieved to find that it was lovely and warm, the tumble dryer was on, I guessed that meant Adam might still be awake but I didn’t want to take the chance of disturbing him, so I sat there in the dark until I had finished my cigarette and headed back to bed, in the hope I would be able to return to sleep.
3:30, that was the time, I remember just looking at the clock, then slipping back into sleep. 5:03, this time, I was awake and no doubt that it was pain that had taken hold of me again, I don’t know why, but if I am roused by pain once in a night, it always manages to do it again and again, if I sleep through, well no problems. I tried the booster pill and cigarette trick, but this time, it failed, I lay there hoping that sleep would take over, but no luck. In the last few years I have noticed pain that has no source, no spam behind it becoming stronger and more an everyday event than it ever was before. It has grown and most annoyingly it is usually more painful when I am in bed than anywhere else, like I said yesterday, ever time I stopped moving my hands the pain took over. It is several months ago now but I do also remember writing that I can’t actually lie in bed with my hands touching me at all, this leaves me in a somewhat odd position of lying on my back, with my arms six or so inches away from my body. They have to be that far away unless they creep closer to me before I am truly asleep, should they touch me it is like lightning being released into my thumbs and then through my hands. I have tried leaving them outside the bed, but the colder air out there makes them burn from figure tip to shoulder and if I rest them on top of me, the weight of them is magnified somehow, creating a feeling of intense pressure inside me, leave them too long and that pressure turns into pain.
So there I was lying in bed with the maximum painkillers I am prescribed and desperate to sleep, but either my skin was on fire, or the pain inside my skin was screaming at me. My upper body felt once again as though someone had laid a lead blanket over it, you know the sort that they cover parts of you with when you are having an x-ray. A dead weight crushing me gently from shoulder to waist, with my diaphragm locked as it normally is when I lie down. I don’t know what it is about being in bed, but all these things happen nightly, just normally I manage to go to sleep within minutes and they are gone, it is the daytime that I feel them the most and they stop me from sleeping all too often. I am quite sure that is why I am more tired than usual, as sleep doesn’t happen every afternoon any longer, all too often I lie there for an hour, give up and get up. I lay there for that hour this morning and had to give up just after 6am, the longer I lie there the more intense it all gets, until breathing is difficult and my entire skin is burning, with needle sharp pins inside it jabbing without end, at tight numbed muscles that feel as though they are becoming made of concrete. The longest I have been able to stand it has been two hours, but I don’t remember it being as bad back then as it is these days, so just after 6 I got up and brought myself through here, giving up on completing my night sleep.
Nerve pain used to happen in small areas, limited intense short spells but often several within one day, now well now I don’t think it ever goes away truly, I just distract myself from it during the day whenever I can. If I stop, if I don’t have something to keep at least my mind running away from it, then it can be just as bad as when I am lying down, but as we all know, silence and darkness always make pain worse. I guess the fact that when I am sat here my brain is running and my hands are moving, enough to blank out whatever it is doing, but from my diaphragm down, there is no great distraction, hence, the pain I always have now in my legs and my backside. I can’t put a date on it, or even a month or year as to when it changed from isolated incidences to constant grinding down and eating away constantly in my legs, but I do know that they were the first to go. Even then it only spread to the rest of my body when things were bad, for years my upper half of me still just had those one-offs, those short spells of driving me mad, disappearing again into a distant memory just waiting to wake again. What I do know without a single doubt is that this time last year, it was not nearly as bad as it is now. These things sort of sneak up on you, when you live with something all the time, you don’t notice that it has become worse or even more painful, it edges step by step into your life taking away a tiny slither at a time, then suddenly something like last night happens and you are aware.
There are no doubts left, no chance that I am wrong, nothing no matter how I try to remember it a time in the past 18 months that I have been without a single part of me truly pain-free. It has to be at least that if not more, the only good point if there is one, is that my legs are still worse than the rest of me when it comes to levels of pain, but the rest of me is catching up and I guess it is only time until it does. Sometimes you just have to admit these things, give in to what is happening, as hiding and pretending has totally failed. Maybe this afternoon I will find some comfort in being in bed and actually catch up just a little on the sleep that I lost.
Please read my blog from 2 years ago today 25/05/12 – My MS Truth
If it wasn’t for writing these posts every day I don’t think I would know which day it was or even which month, what is happening outside my home sort of floats past unnoticed. Every day I probably watch more news broadcast than most and I am totally up to date on current affairs but that isn’t the world I am talking about, the big events are always clear and there, I know about them but they could equally be on any day of any month and slowly I could actually add into that, any year. When you no longer work and no longer have interactions with those outside you……