If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how differently we react to everything when we are diagnosed with a chronic condition. No one who doesn’t have a diagnosed condition would put up with the things we do, they would be kicking and screaming demanding treatment and relief for what I am quite sure many would believe was going to kill them in seconds, due to just how painful it can be. Yet once someone sticks a title on us and slots us into some jagged pigeon hole, we are expected to just get on with it. Our entire way of looking on life becomes warped, as we suddenly accept thing that no one else would, I keep asking myself why am I putting up with this? The answer always comes back quickly and simply, I put up with it because the doctors answer isn’t something I want to accept. I know they would be at a lose as how to stop it as I already fill myself daily with antispasmodic, the only thing they could do is try to remove the pain by pumping even more morphine into me. I also guess that they might stick me in a ward somewhere while they tried to get control over what is happening.
There is a point where you have been through their cycle of trying to get control often enough to predict their reaction, that point also makes you reluctant to the extreme to play their game, their way. I have nothing to prove this, but I am totally sure that at this second there are people around the world in the exact same position. They know what is wrong with themselves, they know how the medical profession work and choosing to put up with something that a healthy person couldn’t even imagine, rather than handing themselves over again. I guess there is a point when you have just had enough of all the prodding and poking, if it means that you then have to put up with things others wouldn’t, well that’s just the way it is and you just have to get on with it, any other option is just too much to bare. I guess I have reached that point that I would quite like to be able to sit down with all my doctors and just talk it through with them, to make it clear that I am now avoiding them, when ever I can, because I fear them taking over control of my life. I know that I need their help, that’s just a fact of the rest of my life, but I want it to be on my terms, not theirs. We never really get the opportunity to have that sort of conversation, doctors always have so many people waiting to see them that you feel you have to go, move on and let the next one in. On top of that is also the sense of relief that they haven’t some great plan for you and you had better run before they think of one. Experience has shown me that all to often just one word, can trigger their sudden desire to have you back for yet more test and prodding with someone else.
This morning has been the first time that I have taken my little blue pills during the day. I have had to take it the last 3 nights in a row, just like everything else, pain is always worst later in the day. It isn’t actually anything to do with the need to sleep, I realised that a long time ago. There is something about watching TV that means you feel the pain, I guess it’s because you are not physically active in any way at all. I spend all day typing or at the least clicking on screen with my mouse, there is always some activity that is required and messages run from hand to brain and back again. Stop, sit, watch TV and you are doing nothing, nothing at all. It took me a while to work out why when my dexterity became bad and I could no longer sit knitting, sewing or something while also enjoying the TV, I suddenly had a huge uplift in my pain during the evening. It’s sounds so simple now, but I no longer had the distraction, pain could now take control with ease. Once again it was proved last night as Adam knew with out a doubt that I was struggling with the pain last night, I wasn’t staying still, switching from one of my strange stretched position, or hunched up over my knees for just a few seconds before a sudden changes when the pain peaked yet again, constant changes as I searched for a way to be able to take a comfortable breath. Now I am not saying that knitting a jumper would have totally changed that, but I bet it would have reduced it.
So what do I do? Do I phone my GP and just let him know what has been happening? Do I take the risk that the call lands me up where I don’t want to be or with more medication that pulls me further down the road of “little left to offer”? I don’t have the answer to any of it today, but I do know that sitting in pain isn’t desirable for anyone.