For those that don’t live with an illness that slowly destroys more and more of your body, I know it must be really hard to imagine the truth of our lives and how we even manage to keep going. I know because Adam has said it over and over again that he just doesn’t know how I keep going and I guess that to many it must appear that we are living in an unpredictable nightmare. It is just as hard for me to imagine a life without it, my life has been this way for 30 yrs, I have no memory of a how it was to live without pain, or exhaustion, or without any of the other monsters that nightmares bring, I wish I could but those memories are no longer there. I guess that really is the simplest explanation there is, this is normal, everyday, nothing that I haven’t done before, it is quiet simply my life as it always has been. Yes thing have become worse, and new things have appeared but without even meaning to you just sweep them and embrace them along with everything else you live with, just as everyone does with all that old age brings their way, they all become your life. That doesn’t mean that I am no longer surprised by or distressed by the things my body gets up to, but I have learned that all I can do is accept it and wait for the next new trick.
It doesn’t take a Mensa IQ to work out that pain and memory problems are the worst and most distressing, but there are still times when I find myself, if you like playing with the strange sensations that I live with. There are hours and hours of amusement to be had from a body that thinks up new games to be played, for playing predict the next spot with slow motion pins and needles, to trying to trigger again that strange sensation that just happened a minute before, or finding a way round yet another problem your body has created. Last night I found myself lying in bed and suddenly being shocked by my right arm, it didn’t feel any different from any of the rest of me until I brought it firmly against my side and suddenly it was on fire where ever there was skin to skin contact. Separating them again instantly stopped it and no matter how I tried pressing my arm on the mattress nothing happened, return it to skin contact by my side or laid across my stomach and once again the fire returned, of course today, well yes it has once again gone. Oddities like that happen almost daily, if you seriously tried to find the reason behind it you would drive yourself mad, because there is no logic. Knowing the medical definition of what is happening doesn’t help at all, you can’t see the covering of your nerves, so the fact it is being eaten away isn’t really that much of a help, especially as it will play with one nerve, get fed up and move on to a different one. Nerves can spark and fire off for seconds or hours, they can cause anything from total numbness through to eye-watering pain and beyond. Tiny areas or entire limbs can be lost to them, what ever they choose to do, happens, just as it has been from the very first one so far back, that you can’t remember it.
I remember being accused of being melodramatic, of complaining about nothing as nobody could possibly have the catalogue of things I was saying was wrong with me, but I knew that it was real, all to real and that was in my early twenties. Finding myself in my 50’s is more surprising than anything else, as I honestly believed that my body wasn’t going to make it and then someone would have to believe that I wasn’t well, a medical diagnosis did that instead. I can’t remember a body that wasn’t filled with stupid pains and daft sensations as I said this has been my life for as long as I remember. Right now I want you to sit totally still and work from your feet to head, make a mental note of everything you can feel, as in sensations and pain. For me the soles of both feet are on fire and there is a constant triggering spasm on my left calf and shin, the pain from it is travelling straight through my knee, where I don’t know what is happening but it works as an amplifier up to my thigh and in to my hip. My backside hurts as well but that is a side effect not my health, around waist level there is a twitch that makes the entire upper half of my body twitch and move about as it doesn’t know how to stay still. Both my hands are now in constant pain, depending on position and activity, but sitting still, well they just plain hurt, my right thumb seems to be the start point of a pain that travels right up the side of my arm to my shoulder and then on to just beside my ear, make sense of that one! My diaphragm is tight and there is pain right across my front, with an MS hug in the lower 3 ribs on the right, there is also pain travelling from the side of my breast up into my arm pit. My face is covered as always with a light pins and needles sensation, one that all to often makes me scratch at, awake or asleep, but sleep often leaves tracks and occasionally scars as well. My left eye and cheek have one of there favourite things going on, a feeling as though they have slipped on my face and are just hanging there. How does that compare with what you feel right now? That is my normal, it varies on what it is doing, but it is always doing something, there is never just nothing, never pain free, never sensation free, never just free at all.
So how do I live with this, how do I not? It is as daft as asking someone who was born without legs, if they miss being able to walk, they don’t know as they have never done it, I don’t know life without all the conditions that now live with me. This all of it is quite simply my life.