Good morning world and here we go again, another day to work my way through. Sorry I have been reading all the responses to yesterdays post on here but mainly on Twitter and I am getting back very much what I had heard in the past, pain clinics don’t really help. I know until I go and speak to them I won’t know what they can or can’t do for me, but I just wish there were more people saying it help, rather than a clear majority saying it doesn’t. I find it so frustrating that here we are in a medical world that can transplant major organs, but the simplest thing that most humans suffer from to some extent in their lives, still defeat us.
When I had my first signs of MS it was for me the pain that I noticed first, apparently not everyone with MS does have pain, I only found that out recently and it amazed me as I hadn’t heard it before. It also came with the nice after note that there is little that can be done as the pain increases through out our lives. It is wonderful when medical people cheer you up with those statements. Not having people believing that there is really the level of pain you are suffering, is hard to handle. I at one point convinced myself that I had to be the worlds biggest wimp, as everyone must be the same of me and the dismissive attitude I experienced from the Doctor had to be because everyone lived like that. Pain grinds you down and with the ‘none belief’ of others it also pushed me into depression, something that since I have had my Diagnosis has never reappeared, but I can fully understand how someone that was in that position could actually commit suicide. What ever is wrong with you, if you have pain continually, even a mild pain is highly destructive when there is no escape.
With the aid of all my drugs and a couple of good gins on top I am lucky now as I get the sleep I need so much, but if I didn’t I would have gone mad long ago. For me the only other mild escape I have from it is when I keep myself busy here at my PC, distraction does help and that is a fact! Sit in a chair starring at the TV or lie in your bed trying to sleep and then you know how bad it really is. Even sat here I have to keep moving, shifting the pressure areas that my weight is on. As I now know though that shifting is actually causing more pain, the pelvic one. There is no escape, everything is a pay off, relieve one, aggravate another. There is no universal thing that I can compare it to and setting it out so it can be understood is really difficult. I can’t say clearly that it is like, or if you imagine, it isn’t describable in that way, as I could never have imagined it before it began. None of the illnesses I have had in the past get anywhere near it as at this second there little of me that isn’t at the very least aching.
So many of us live this way and yet as I said at the beginning we are still no closer of bringing relief to any of us. Until that happens we all just live with it and unfortunately there are always going to be too many of us. Managing pain actually is the wrong thing to call it, pain can’t be managed, what is managed it our ability to live with it. I manage my life around it, to ensure I can cope with it, the pain doesn’t actually change, it is my coping mechanisms that are managed, pain is defiant, self-centered and relentless and we have to be just the same in return.