If you live with chronic illness, you generally live with chronic pain. That pain can be anywhere, it can be in the same place all the time, or it can be transient. It can be easy to explain or it can leave you constantly puzzled and constantly questioning, is this part of my condition, or is this something else. At times it seems as though its only purpose is to drive us made, at others, it feels like a warning. Pain can dominate our days, or it can lie quiet, just waiting to catch you off guard, like some kind of ninja style assassin. Whichever it is, there is only one thing for sure, it is going to hurt, regardless of the medication, or the care that we take, it will hurt us.
Personally, I have few memories of life without pain. Brief spells in my childhood, but, the dominate memories, all contain pain of some sort. In fact, not my first, but my second memory of my life, is all about pain, not from illness, but from curiosity. I must have been about three, definitely no older. My mother had one of those old-fashioned sewing machines, mind you, it probably wasn’t that old at the time. She was using it and I was stood watching the flywheel at the back of it. Those spinning spokes fascinated me and despite my mother’s warnings, I just had to put my finger into them. Other than the pain, I don’t remember much else, other than the fact, that it ripped my fingernail off. The first pain, that had no explanation, didn’t show up until I reached my twenties, and from then on, I don’t remember ever being free of it.
These days, I don’t think there is a minute of my day, that doesn’t include pain. I know that that sounds horrific, but I’m not talking about the stop you dead pain that leaves you in tears, no I’m talking about those smaller ones, those aches and pains that seem to live in every cell. A sudden pain in my lung, when I take a breath, then in my lower gut, from something moving inside. Along with the one that for no reason which appeared high in my left lung, next down to my diaphragm, and a shooting spasm in the arch of my left foot, with an ache sitting steadily in my right shin, just as the back of both lungs gently burn and both arms complain about typing. I wrote that as it was happening, which means it probably took twice as long as it did for you to read it. A snapshot of me, but I could go on and on as every minute is like that. There is no silence in my body, no time, other than when I am asleep, that pain leaves my alone. Thanks to the medications, the very ones I so wish, I didn’t have to take, all of it is at a level that I can cope with, a level I have adapted to see as normality.
If it wasn’t for those tablets and elixirs that I swallow on the demand of the clock, I don’t know what life would be like. If I forget or get lost in time, if I don’t take them, when they can take over from the previous batch, I get a glimpse. It’s enough to send me moving about as fast as I can, to correct my mistake. Even then, I know there will be some medication still in my system. Not enough to keep me in my normality, so the truth, the reality of life without them, I have no idea, and although I don’t want to take them, I also know, I couldn’t stand to live without them. That is how controlling pain is. It takes over our lives, in ways that those who have never felt it, can possibly every understand. Whether I like it or not, my life is pain, low level or extreme, it is my life and I can’t escape it, any more than all those who share my lot of life with chronic illness, can escape theirs.
If we didn’t adapt, if we couldn’t adapt, then none of us would exist for long. They can prescribe all the drugs they like, but, they never take all the pain alway. I used to wonder why it was that when reading history, there appears to have not been, half the illnesses there are now, I think I now understand. Imagine your life in 1500’s, what would you have done, with no drugs, no treatments strong enough to help you, or nothing to help you at all. Even not, nothing gives us the freedom and peace that we yearn for, but they get close enough, to stop us from being driven insane. I used to fear that I would lose my sanity. I used to fear that I would fall into those deep depressions that so many do. As I have written before, I have been there a long time ago, drive by the hell of my earlier life, so I know depression when I see it. Adapting isn’t enough, it’s essential, but not enough.
For me, I have two sanctuaries, the first is clear, this, everything that I write, this is my free and constant counselor. You don’t need a person to talk through how you feel. Write it down and firstly, you fix so much in your own head, just because it’s no longer just in there. Publish it, and the world tells you what needs to be done. My second, I’ve also written about many times, simple relaxation. I know many poo-poo it, but the longer you use it, the more practised you become, you really can remove pain, but unfortunately, only while you’re doing it and for a short while afterwards. Having said that, recently I have discovered that even when I am writing, I can apply a not quite so effective, but helpful level of relaxation when the pain gets too annoying. I guess, that that is one of the tricks, that once you’ve mastered the silent lying down in the dark version, becomes possible. A few seconds concentrating on the top and base of my spine, then the area where the pain is worst, can often give me the relief I need, when pain edges above normal. It helps, just as constantly checking my posture, even when it’s not causing pain, all adds up to some form of control. When all else fails, then there are more meds. those booster pills, which flood me with a quick shock of more Morphine. They are always there beside me, ready for ease of access, but I keep them, for when nothing else works.
Pain is our life, fact, yes, we and our doctors can tweak at it, but its ours for life. Strangely, once you accept that as a fact, life get’s easier. Before I did, I made it worse, I fretted and stressed about it. I was still at the point when I stupidly believed, that medication should take it away totally. If only someone had explained that it didn’t work that way, maybe, I might have avoided a couple of years of what was, self-imposed hell. Now I understand. Now I get it. I don’t like it, but I get it.
Please read my blog from 2 years ago today – 01/01/2014 – Your future laid out before you
Two Rooms Plus Utilities 