I'm on medication for the condition which is known as central post stroke pain but it hasn't been effective in my particular case, it hasn't made any difference at all to the pain levels. It's something that it's, it's a pain that's very, very hard to describe. Having had pain before, childbirth and so forth, it's something that is over and done with and it's a mean, you know there's a finite end, you've got it for a period of a block of time and then hopefully it will go. This pain has been here for a very long time and it's something that has been, now become part of my life in the way that I have to lead my life and I have to adapt to the way I live around it. It causes me a huge amount of wasted energy fighting the pain because I want to do things and I'm physically exhausted and can't do what I want to do with my children. I haven't slept a full night through since the pain started, which was 2 years ago, because I'll find I'll get to bed and it'll wake me and it feels at its worst as if somebody's trying to pull my arm, twist it and pull it away from my body. I've no perception of where my arm is at this point. It's as if somebody's put a spear and turning it deep inside my shoulder, all down my arm into my lower arm and into my hand and I have to, I'll get up and I'll do my physio or I'll have a hot bath.
Sometimes I won't stay upstairs because I'll wake my daughters. I'll come down here and I'll, I'll even wash the kitchen floor or, my right hand, fortunately I'm right handed, I, I'll do ironing. It's mind over matter. You have to not let it beat you. It's something that you just have to get through in a way. There are certain things that make it an awful lot worse and I avoid them cold. I can walk past a freezer in a supermarket and it's as if somebody's put a knife through my shoulder. It's there all the time at different levels. At its worst, it's like your worst nightmare, it's something that I couldn't begin to describe because I've never had pain that bad before. It's as if, it's frozen. I've never been skiing and I've never had frostbite but it's so icy cold all the time deep in my shoulder, it's as if it's on fire and that's, that's a really ridiculous way to describe it but it feels like frostbite constantly in my shoulder and down my arm so it has completely, completely changed my life, the pain that the stroke itself means to pain to me because it's the only deficit I've unfortunately been left with. At the moment, there isn't really any other treatment for it. I've tried reflexology, I've tried acupuncture, I've tried hypnosis. To be honest, I'd jump off a cliff naked if somebody said it would work and I'd even got to the stage where I'd been to see my family doctor and wasn't coping with the pain and was under stress, also, in different areas of my life and that impacted greatly on the extent of the pain and the depth of it, the intensity is far, far worse if I get very upset. I've known, I've no idea why that should interact but I know from my experience that if I get worried, stressed, very upset, my pain is a thousand times worse or maybe my ability to deal with isn't as good. So I try and avoid the things that I know will make it worse.
It's not an easy pain to live with because it's not constant, it's here all the time but then it can come in a quick sudden surge for no apparent reason and literally wake me from a deep sleep and, and I'll wake and I'll just, I'll just be rocking, as you do with cramp when you have to wait for it to subside and then when it gets past that intensity I go and I do my physio or I'll have a bath. I feel, I found that relaxation tapes help enormously that I, I'll do a set of physio and then I'll put a tape on and I do find that very, very positive and very therapeutic. |
