There is nothing in this world as wonderful as a new pair of earplugs. I only use a set for a couple of days then change them, but last night their impact on what I could hear, seemed somewhat marked. I know I have said it several times, but I so wish I had bought both them and my eye mask 40 years ago. Just like there are occasions that you step into the shower it is so perfectly balanced in temperature and strength, that you just don’t want to have to leave it. Last night, when I put my earplugs in the closing off the outside world, was sublime. There is a perfection, even a joy, in finding yourself in total silence. Add the total blackness that the mask supplies and the comfort of my bed with the duvet fluffed and settled over and around me, and my isolated cocoon is complete. There is nothing like being allowed to be totally undisturbed by anything other than your own thoughts. Isolated and totally free of interruption. I was so ready to sleep last night that finding everything just falling into place without effort was wonderful. I didn’t lie there awake long. Just long enough to appreciate how good it all felt and to run through the day before drifting off into glorious sleep.
I was woken by the unmistakable demand of an over full bladder. No matter how it complained, I was finding it incredibly hard to find the conscious levels required to actually move. It is a feeling that I know all to well and it’s one that I really don’t like. It’s almost as though someone has drugged me and I am having to fight my way to a position where I could show I was alive. It is a real struggle, one that takes several attempts to actually achieve. Pulling myself to the surface over and over, then failing as I slipped back into a fitful sleep. Even when I do manage to actually move and pull myself up into a sitting position, I can’t even then actually move with ease. I sat there this morning feeling terrible and wishing that I could just lie down again. The world was moving, I could feel it although my eyes were shut, I also knew it wasn’t moving at all. It’s a feeling of dizziness but it is totally in my head. So much so that my actual brain feels as though it has been turned into mush that is swimming around within my skull. Often I wake to find that the machine that pulped it is still active and thumping in time with my pulse, whilst a strange sort of low whistle sounds in the background. In normal dizziness your eyes confirm what you feel, this has no affect on my vision at all. I was sat there feeling completely wrong and struggling with a simple question that had to be answered before I went anywhere. Pyjamas or just dressing gown? It was just 14 minutes until the alarm was due to sound, but I just wasn’t sure if I should just get up and stay up, or come back to bed for those last few minutes. I decided that getting up was the logical answer and once dressed I headed for the loo.
I have woken many times recently feeling like this, so I knew before I stood that walking was going to be interesting and that I was going to have to walk with care. My balance always starts to swim with my brain, one second throwing me backwards, the next to my side. Staggering along with what I can only describe as a penguin shuffle, is now a well-known start to my day. From doorpost to the wall and onwards until I find the safety of somewhere to sit again, this morning that was the much-needed relief of the toilet. It was a good thing that I wasn’t in a hurry to do anything else, as I swear that every drop of yesterday’s 2 liters of fluid was all there waiting to leave. From one seat to another in the next door kitchen was my next goal, along with the first cigarette of the day. something that didn’t go well. Just a few puffs and I had to put it out, I just couldn’t take it as it was making me feel even worse. I sat in the kitchen as I have found myself doing more and more when waking at night, not just in the morning. I was just sat there doing nothing, unable to do anything might be a better way of putting it. It’s like I don’t actually know how to move, I sit, blank and cut off from everything, almost as though I am about to go back to sleep exactly where I am. There is a numbness surrounding me and it closes in around my brain more than anywhere else. My mornings are becoming a battlefield, this is happening all to often for my liking. It takes time, a lot of time for me to actually start to feel normal. Today, it was just over an hour before the worst of it was gone, but I still don’t feel great.
Jake just called me and when we were talking, I suddenly stopped. It was more than my normal forgetting words or what I was talking about. It was like those blanks that I get when sitting in the kitchen. It was so dramatic a silence that it was Jakes’ voice demanding was I OK that snapped me out of it. I said, “yes I’m fine”, then shut up again as I desperately tried to work out what had just happened. I still don’t know. My brain just stopped. I was suddenly nowhere and nothing, without a clue of how to get back. Even when Jake tried to help me get back on track, I struggled to find anything that matched the words he said back to me. I doubt the whole thing even lasted a minute, but it felt like it went on forever. That is the first time that has ever happened to me. I don’t like it. It somehow felt like a terrifying place to be and I don’t want to go back there. I often got lost in my words or forget what I was talking about, but this felt so different, it was deeper and stronger than anything I have ever known before. It has even managed to leave something behind it, other than that fear that it triggered. It has left me feeling lost. Not just about what happened, it’s a feeling of being lost about everything.
I said yesterday there are so many small things happening just now. I can’t pick one out which as being the most important or the reason behind it. There is nothing I can blame for it either, but what I do know is something is changing and something is growing in what it is doing to me. My right arm this morning was once again not quite right. It wasn’t as bad as Sunday, but it was numb and I couldn’t make a closed fist again. Now, it’s back to normal. The only common string seems to be sleep, all these new things seem to be worse when I wake, which is totally the opposite of how my life normally is. It feels as though I have two different things happening to me right now. My PRMS and this other thing, which I know is managing to make my PRMS worse at the same time. Whatever happened when I was talking to Jake, I don’t know, but I really don’t feel right, even writing is hard. I just hope it makes as much sense to you, as it does to me as I am writing it.
Please read my blog from 2 years ago – 21/07/2013 – First a funeral, then the will
Well the plans are started and we have talked through a range of things that we agree has to be done so that we can both move on and we can both make the most of the time we have with each other. Strangely it wasn’t……