I am waiting for the doorbell to ring as the MS nurse is due here today, with her due in an hour I am having to do the thing I hate most about NHS staff coming to my home, I am having to let the heat out of my house. Because I am a smoker I have to open my windows an hour before they arrive, so this will be the last NHS staff allowed into the house now until next summer, as long as nothing really nasty happens. They don’t leave a cheque behind them to pay for the heating.
I am still tired and still in pain and for once someone will see me not at my worst by any means, but not a my best either. I often seem to have that type of luck that means appointments usually coincide with when I am on the better side, which I have seen as sods law over all the years. I felt not to bad this morning but rapidly slipped as I woke up properly, now two and half hours on, I desperately want to head back to my bed and sleep for several more hours. If offered hibernation today I would accept, it is that type of tiredness, to my very core. I think my questioning is over and I am in flare, not a horrendous one but one that is all over rather than centered as I have found them to be in the past. In the last month or so I have just felt myself slipping and there hasn’t been my normal breaking mechanism that I had years ago. I faced up to that yesterday and started to put myself back together for the millionth time, but I feel so rotten that is going to take time. I really wish that I would learn from all this, but somehow I don’t.
I had hoped to be making great strides with my book but it fell onto a hold spot a few days ago as I just don’t feel up to working on it, all I want to do is coast and sleep, I know there is no point fighting as I only make it worse when I do. There is nothing that I can do but go along with it and wait for the first days of improvement to appear. Even keeping up with this is a draining experience that I landed up scrimping on when it came to my Twitter post yesterday. OK they are all scheduled, but they still take time and energy to actually write and set in place to run, I had also planned to cook dinner last night, as Adam coming home at a set time, would limit my ability to burn anything, and didn’t get there and I doubt that I will either again tonight. There just isn’t any energy to do anything else than sit or sleep, not being able to, or really wanting to fight against and that is where my final flare decision has come from. Flares remove all the fight, they wash away everything that is you and replaces it with an empty void, just like all voids there is nothing but a vague echo of what should be there. Every muscle and bone has a damper attached, resiting the messages to move preferring to remain motionless unless pushed into action. I don’t think that years ago when I was fitter that I could have imagined what I feel now, so to explain it to others takes great care as words aren’t always enough or clear, as words give only a glimpse of the reality.
Imagine being inside a room filled with wet concrete that you have to move through, your body is cocooned by it, supported in it’s position, stopping you from wanting to move, but you have to. Thought and effort allows your arm to reach forward heavy in it’s action as pressure of the concrete makes that simple movement hard, as you move it forward the space you create slowly fills making returning your arm to your side as hard as it was to reach out. The effort of that action drains your core strength so the next action takes more to preform than the first. All the time that you aren’t moving that concrete is setting, action is the only thing that keeps it fluid but those actions drain more and more, replaced with a desire to stay still and accept the cocoon as it becomes more and more comfortable to just stay still, then when you have to move there is less strength and more resistance as the day goes on it increases. I feel as though I could lie in my bed now for hours, not moving, not sleeping, not even existing, but every pain is amplified, every spasm intense and the pressure on my body from mattress or seat becomes needle sharp. The fight between my body and my brain continues all day and my high points are when I can sleep and escape.
I know that all sounds bad, but strangely it has become normal to differing degrees, and I am by no means trying to scare anyone who also has MS as this is just one version, mine and mine alone, there will be others I know who could tell similar stories but none identical. This is how things are when they are bad and when they are good, well the strange thing is you forget so quickly and get on with the good for as long as it lasts. I feel bad for now but I will soon feel good again.