Often I am set off on my daily post by a comment that appeared on twitter in response to one of my tweets, but I had to totally love one, out of complete understanding that I read this morning. I had posted a picture on Facebook and put out a tweet something along the lines of “how nice it is to have the entire bed to yourself”, the response came from another who suffers with chronic pain, “especially when parts of your body choose to sleep in different directions”. I immediately saw myself lying in bed, yes on my back but with both my left arm and leg stretched across Adams side and my right leg out of the bed with my foot on the floor. Not elegant of pretty, but all too often a fair description of just one of the many positions that most would just think mad, but at that moment is where I can find comfort. It is all too often a fact that I wish we actually had an even bigger bed, because surely it would offer up, even more, possibilities. Comfort has become one of those things that verges on obsession and not only in bed, I have all to often caught myself sitting in a strange screwed up position and suddenly glad there is no one there to witness it, as that would be just another pain to bare.
The truth about chronic pain is that unless your medication can take it away, none of either the strange or even logical positions you can manage, don’t take pain away, they simply ease it for a short time, until it realises what you have done and forces you to move again. It’s not like trying to deal with the everyday pains, the pains we all know, those caused by an accident or strain, where there is normally a position or surface, or even a temperature change that will help to ease it. Like everyone I have had my fair share of back strains or muscles that I didn’t even know I had, objecting to being exercised, those pains eat away in one area and all you have to do is find what works for them, the rest of your body doesn’t matter. Now try imagining that your entire body is in pain, varying from aches that throb and grind, through to pain so sharp and so intense you can’t even bare to move it. You might be able to bring some relief to say your hand, but in doing so, well you may causing worse pain higher in your arm, every motion causes a cascade of reactions, passing the pain on and triggering new ones. Chronic pain doesn’t just eat at one point it eats at your entire body.
Right now I am as always dosed up on Morphine, Gabapentin, Amitriptyline and Paracetamol, I take that lot not to be pain-free, but to be at a point where I can manage and I can get on with just living. I suppose at some point in my life I was pain-free, but I have no clear memory of it, at best I remember that I was maintained at a low ache but I was so used to it, no one would have known. In fact I am sure no one knew, even those closest to me, as I saw it at that point as normal. I know that this may sound odd but I had been told so many times that there was nothing wrong with me, that I had come to the conclusion that everyone had pain, just as I did and I was just a wimp of the highest order. The pain I have now, despite all those painkiller is far worse than it was then. I have questioned many times if they are doing their job and what it would be like if I didn’t take them, trust me my trials prove beyond any doubt that they do work. I know that it doesn’t paint a pretty picture of the life that I lead, but remember it isn’t just my life, there are millions just like me who spend every waking moment in pain and trying to get rid of it. Little will ease chronic pain, but it doesn’t stop you ever trying.
I have seen so many beds, braces, gizmo’s, wraps and so on that are advertised to a market who will try almost anything to just find comfort. In the past I was given several to try, their effect was so minor that the work of setting them up or putting them on just removed any benefit. The pressure of any surface you are sat on or lying on, will make a slight difference, but the rest of your body that isn’t in contact with anything still hurts, often worse. Even if I could float in the air, the pain would still be there, I know because I tried things like baths and swimming, but the pain is inside and it goes on. Once you have accepted that and learned for yourself what works best for you, then all you can do is get on with it. There would be no point in my sitting here feeling sorry for myself, or whining at every movement, I still have a life to live and I am going to make the most of it. If that means that I have to lie in my bed in positions that are on the surface are ridicules, well that’s what I will do and yes I do still often laugh at myself because I know without anyone telling me just how silly it looks.
Life with chronic pain is hard, some days harder than others but there are always the bright points in every day, those moment where maybe you can’t totally forget about it, but you can put it to the back of your mind, you can still enjoy life.
Please read my blog from 2 years ago today – 13/03/12 – Friendship
Jake phoned me this morning to continue has story about his drum kit, so my diaphragm spasm hadn’t given me a true escape, just a delay. I now know that the snare drum is the same one as used by the drummer from ‘Metallica’, enough said, I can feel you drifting off already. He asked me is Tracy was in Glasgow just now? That kind of surprised me. Tracy was probably the best female friend I ever had. We met when we both lived in Rhu and is often the way, we met through our children. My daughter was attending the nursery school at HMS Faslane, the children…..