this was written and posted by Teadrinker on painconcern and posted with permission:-
Pain slunk into my life one hot, sticky day in July about 7 years ago. It doesn’t have an exact date of birth. It doesn’t have a name, and for a very long time neither of us was really sure why it had chosen me. But chosen me it had, and once it had settled down and made its bed in the roots of my teeth, it began to poke its bony fingers around the rest of my head, nosing about to see what other misery it could impact on my unremarkable life.
I made it quite clear that it wasn’t welcome, but it just laughed and embedded itself into my ear, nose, cheek, lips, neck, shoulder, arm and hand. It started out by whining softly but stepped up its attack with screaming, shouting, thumping, cramping, pinching, itching and burning. It drilled through the side of my skull, and stuck pins in my fingers in the middle of the night. It had loud parties when I needed to be quiet, but was remarkably shy in front of doctors and hid on MRI scans, helping to perpetuate the idea that maybe it wasn’t there at all and I was merely suffering from was an overactive imagination.
Of course, it liked nothing more than to resurface on the bus ride home, bouncing on the seats and throbbing in time to the engine. It crashed into rooms unexpectedly, demanding attention, and never mind that there were deadlines to meet at work, or two small children in my life that really needed me. It threw tantrums at family gatherings and behaved appallingly on longed-for nights out, refusing to stay at home with the babysitter.
I tried to persuade it to leave, gently at first with paracetamol , and when it didn’t take the hint, I hurled stronger stuff at it, recommended by countless GPs and hospital consultants. It simply consumed the medication and burped in my face, and laughed at the acupuncture needles, and was extremely rude to the osteopath.
Sometimes it brought its even more terrible friend Migraine with it. I could never get anything done then, and it was easier to let the pair of them walk all over me.
I did my best to get on with life, but every day was a bitter battle because of this awkward thing sitting on my left shoulder, yelling in my face all the time. It tried its hardest to drag me down to its level, to the pits of despair. Every day was frustratingly miserable, every new medicine or treatment was a game of clutching at straws, a game I seemed to be losing at.
Eventually I found a straw I could grab hold of, and Pain agreed with me that it would sit still in the background for a bit if the doctors fed it with botox every now and again. It also doesn’t like physiotherapists very much, and will stay on the naughty step for a short while when I bring out the heat packs and try to slow down.
I don’t know when I realised that Pain was here to stay, and that I was the boss. It took a lot for me to accept that it wasn’t going to just melt into oblivion never to return, and that I would have to be the one to take charge.
It turns out that I have been put together a bit wrong and it’s a long and slow road to correct the misalignments and the physical discomfort that brings. But if Pain wants to come on this journey with me it will have to follow my rules, and I will have to compromise sometimes.
So here we are, seven years on, and it’s hunched up on my shoulder right now, trying to goad me into letting it have a massive blow out celebration and a sleepover with its new friends Sciatica and Lower Back Pain. I have tickled it under the chin with my repeat prescription and told it a resounding, “no.” We are trying to rub along together and make the best of things. Tomorrow it might slap me round the chops when I’m not looking, but today is a good day.
written by Teadrinker on painconcern
this is the permission letter I got from Teadrinker to post the prose:-
yes, that's fine to do that - I will leave it to you as i'm not a member of that community (and hopefully won't have to be!). I'd like to see the comments though. I want people to know it's possible to live better with pain, but I am also very aware that I am a lot luckier than most people and everyone's situation is different. I have also been very suspicious of anyone, or any book, that mentions "living with your pain" or "beating your pain" - if you are in the midst of a lot of pain the last thing you need is someone telling you to "be positive" because what you really want is for all the pain to go away forever, and it's terrifying to have to face up to it always being there. For me, every time a doctor or well-meaning friend mentioned being positive and learning to cope with it I felt that they were being dismissive of my need for a diagnosis and a cure, and were perhaps suggesting that I was putting it on. (It was a good year between me buying a book recommended by a pain consultant called "Overcoming Chronic Pain" and me actually being brave enough to open it).
I am no Pollyanna and quite a pessimist anyway, but I think that if can get a bit of control over the pain and put it into perspective it makes it easier to bear.
Perhaps you could also share these comments with the NRAS people - I don't want anyone to think I'm being all preachy. I've looked after people in hospital with arthritis so I know what a horrible thing it can be.