I can’t find a single muscle or limb that will give me peace although I am doing everything I can to find a position that suites them precisely, a situation that has now lasted for 4 days. Like almost everything, when I wake they are at their most peaceful, stiff but not painful and happy once warmed up to act as almost everyone body does. So my morning reply to Adam when he ask how I am, of OK, is not telling any lie, but only because he is asking before it has had time to realise I am once again not lying in my bed, the preferred position. I guess it is usually around 9:30 that everything kicks of and I would say it is fair to say I am at my best everyday before that time. At first I went into my cover up and wait and see option, it is always the preferable state as you never know what the day will hold, of even if it will last past the hour you are in. On top of that thought is a fact that has joined into my life recently, I wake unable to remember the pain of the day before, it isn’t until it appears again that I then connect all the time fields together. There is unfortunate fact, when you forget things, it is then impossible to know when you started to forget. It feels like living in a spiral, you are aware it has happened before and if you could just reach back to that spiraling point you could make sense of it, but once out of reach, it is gone.
I am finding all to often these days that the day before has gone, not that I have forgotten the day happened but if I tried to sit here and list all the pains and the problems of the day, well I doubt very much that I would list half of it. A year ago I would forget symptoms from a few weeks or months before, but now until it happens again, well all to often it is gone. Right now a pain has reappear under my left ribs, I know it was there yesterday and for the 3 or 4 days prior, I also know I have had it many many time in the last year, but until it started again I would have been totally unable to describe it or put my fingers exactly where it is. Finding myself already not wanting to move any part of me just in case I cause myself more pain, well that is enough to remind me quite clearly. Adam and I decided to stop the physio as I have been in so much pain every evening that we couldn’t help wondering if it was doing more harm than good. On a couple of occasions when he had been working on my spine, I suddenly lost the feeling in the right arm, it didn’t last long, but the fear of playing with the unknown has put us both off. Clearly there is also a question of was it the physio or me, when it came to this pain that was driving me to bed nightly and not just nightly. Yesterday I went to bed for an hour in the morning and 3 hrs in the afternoon, yet still headed there again at 8:30. Yes I sleep but I go there in the hope of finding peace form the worst of the pain.
I know that I said it was 4 days, but it could be longer, 4 days though feels like the right time period since I was last able to find any peace, or that I could be totally motionless yet in pain. I remember years ago long before my MS was diagnosed that I would get spells where my arms and legs would feel like this, but then that was all it was, for me to feel this with all the meds they are pumping into me, well I don’t fully understand. Then there is the real pain, well that too is raised, but is it fair to be putting all of this down to the physio, I doubt it. So where do I put the time point this time, that point where if it hasn’t got better I will call the doctors, or is it the one I will forget about or tell myself that I don’t actually need to make that call. I know that I have been fighting talking to them because I also know what the answer will be, more drugs, more opportunities to forget because they are fuzzing my mind, something I want more than anything to avoid.
I know I am sounding self pitying and down, but I’m not, I am just trying hard to make sense of what I don’t want to believe. I know that yet again I am holding onto that tiny thread marked ‘it will get better’, so I wait for what exact sign I just don’t know. How do you spot when what you can’t remember is no longer there? Yes I can write it here that I am having optical migraines, icepick headaches, that every muscle feels as though it is under attack and that there is no longer physical comfort without it taking time and effort to find it. I can write what I want, but what I remember are two different things. All of this often feels like some kind of madness, knowing and not knowing, they seem so black and white but the truth is they are so far apart and so hard to pin down and all they do is make things worse. Running away sounds all to often like the best option, but when you can’t even walk how do you run. I used to use my work as a way out, but that went to, I can’t hide anywhere any longer, I have to live this out 24hrs a day never knowing what will be my next step or what will happen without my consent.
Today the pain will rise and the muscles will slowly get heavier, each aching and each telling me to stop what I’m doing and rest. I will have no choice but to listen to them and loose yet another part of my life, the alternative, more meds and still more of my life lost. Knowing and not knowing which is the best?