Everything is wrong today, all the things that are normally wrong, some are amplified others normal, but on top there seems to be a layer that is more wrong than I have felt it for a while. I noticed within minutes of getting up that my muscles are once again playing the exploding game, but it was once again my left side that screamed the loudest and had found a pain to travel down the inside of my arm, from my arm pit to my finger tips. I can’t form a fist again, yes I can bend my figures but they don’t actually reach the palm of my hand and the more I push them the greater the pain in my arm. The three outside fingers are sending shards of pain when ever I keep them moving for too long, this of course means that my typing has become some what stylised to fit with my ability. I have over the years created my own version of touch typing, I am sure I would be told that I am using all the wrong fingers for every key I use, but it now changes almost daily. I seem to have learned where the keys are, but I then use the figure most able to hit it, rather than the one that is most logical, or that leaves the right fingers in place to find the rest. Years of pain, numbness and even totally deadness have given me so many ways round it all, that I honestly don’t know how I manage to get anything written at all.
Within about an hour of waking the pain started to circle round my upper arm and up over my shoulder and into my neck, if it happened the other way round I wouldn’t have given it the slightest thought, a trapped nerve in my neck, but trapped nerves are never silent, so that has that idea shot dead before it even started. There has to be something about the way the nerves are connected that means I loose digits in three’s, I have tried to work it out often and yes I can find on line a possible explanation as to why the out three fingers might go dead, it happens with carpal tunnel syndrome, something I was once diagnosed with years ago. At the time I didn’t think they were right as I had told them that I kept loosing feeling in all my fingers and had pain in all of them, but they brushed the other fingers away and stuck to their diagnosis. They tried to push me in to having an operation at the time, but I was self employed and as a DJ carried heavy equipment all the time. I couldn’t just take 6 weeks off and not lift anything heavier than a tea cup for that length of time, so I didn’t have it done, a good thing really as the diagnosis was revoked not long after I was told I had MS, it might provides a connection to that finger grouping but that is all, a connection. It falls apart when it is the inner three fingers, as how can my centre finger of both hands be both connected to the inner three and outer three, it doesn’t make sense, any more than the fact I have the same issue in both of my feet.
So here I am once more trying to type with a painful half dead hand and a body that has once more decided that returning to bed would be the most wonderful thing to do. I know I have said many times that one day I am just going to do it, not get up if I wake tired and unwilling to wake, but it is incredibly difficult if you have never been a person who has ever had lie ins. It would be just about as alien to me to either not have a set alarm, as it would be to ignore it, two things I know many including the person who is snoring loudly right this minute, find as easy as just not opening their eyes. I know that many of you will simply not understand why it is such a huge issue, after all, I don’t work and does it really matter what time I am awake or go to sleep, well it does. Quite simply my health doesn’t cope when my routine is changed, I know without a doubt if I stopped setting my alarm, I would slowly like most other people have shift into being a night owl, on the surface still not an issue as yes I could just shift my routine to go with it, but what happens if I had someone coming here to see me, like the daughter, who is here next month, or the doctor, or worse still, I had to go to the hospital to see a doctor. My health would quite simply not cope with it, it is bad enough when my routine is changed around in my waking hours, but to have something thrust into my sleeping hours, well I would be totally destroyed for days, many days, possibly even weeks. It is just not worth it, I have to whether I like it or not, stick to being awake when the working world is, no matter how hard I find it, or how tempting it is to just cuddle back under the duvet for an extra few hours.
I remembered this morning to take the extra 10mg of MST, I know it is a build up medication and that it won’t work straight away, so the fact that an hour after taking my meds that I was still in pain and my muscle were still tense and ready to explode, didn’t really surprise me. I have now also taken my booster pill and yes it has taken the entire list of peaked pain and muscles set to explode away. In effect, I have now the highest amount of Morphine I have ever taken in one go and strangely as I was writing the last paragraph about not taking extra sleep, I actually found myself waking up. It is events like this that convince me I will never be able to understand my body totally, how can taking a drug that is meant to remove pain and relax you, actually wake me up? It is just as mad as when they gave me medication to help me stay awake, raising the dose slowly to the highest they would give me, I still managed to go to sleep an hour after taking it. I would just once like to have a straightforward reaction to anything, not just drugs, just anything, absolutely anything.
Please read my blog from 2 years ago today – 27/07/12 – Desire
I seem to be running behind today, one of those days that you just sort of loose what you should be doing as you keep drifting off into happy places where time doesn’t matter. I actually feel good today, that doesn’t mean that I am not in pain, far from it, but you don’t stop being human just because you have a Chronic illness. All of us have days like the one I have today, a happiness….