Yesterday was a more normal day, we didn’t talk about or work on any of the things that filled Saturday night, I think we both needed that small space to breath, before any more happens. I plan this afternoon after I have had my nap to make a few phone calls and see what I can find out, but for yesterday a veil was drawn over everything so we could have a peaceful Sunday together. The renewed feeling of calm I believe is helping me physically, I woke in the morning to find other than the mad pain in the inside of my elbow, the rest of my body was calmer and at fist I found many movements occurred with a new ease, not easy but easier.
I would love to say that that is still the case today, or that it lasted for all of yesterday, but I would be lying. I think it was around 11ish that things returned to normal and the mix of pain and exhaustion had me struggling to complete my daily work. Sat here with my arms feeling so heavy that typing was returned to a chore not a pleasure, I found slowly it spread through out me and I again felt weakened as I had done all last week. The speed that my muscles are collapsing is incredible, just standing for less than a minute turns my legs in to objects of annoyance rather than givers of movement and I have to sit. There demands get louder and louder with every second, not pleading but demanding. It is not only my legs but my arms don’t want to lift a glass and when put down again turn into lead as a warning not to do it again. On the upside though I haven’t had any reason to both stand still and lift a glass to my lips. Like most of thing, yes I had a good morning but it not only crashed out on me, but even once rested again it slowly built up until it. They somethings never really change and I am beginning to really understand just how right those words are.
A few weeks ago before we went for our most recent hospital visit, something new started to happen to me, I know it is MS based and there was no connection to my lungs. Like everyone with MS I get spasms and muscle twitches, at their mildest to someone who doesn’t have MS the best comparison is like those moments when you are about to fall asleep, then suddenly a limb will jump and wake you again. Those twitches can happen any time, in isolation, or several at the same time, the most noticeable of mine is in my spine. I have lost my core strength and it looks as thought I am constantly shifting around as different muscled take over and twitch me from side to side, with sudden stops and starts. I find it a total joy to lie on my bed and have them stilled by my weight on the mattress. Even when I am trying to go to sleep I still have other that will twitch and some that will move with sudden violence, something I don’t find they do when I am totally awake. The closer I get to a true sleep the more the chance of something happening strong enough to wake me, like anyone else. In the last couple of months I have found myself woken more and more by not just a limb or even my entire body have one jump, on sudden spasm that brings me back to wakefulness, I can only describe it as feeling like a mini convulsion. Don’t get me wrong, I don’t think I have something new or something to worry about, but they are really really odd. They don’t last for more than twenty seconds and vary from no pain, to loads of the stuff. It isn’t something that happens daily or even weekly, it would fairer to say that I have had around 12 or 14 in total. I say 12 to 14 as the last two were within minutes of each other, it had cleared and I started again along the sleep path, then suddenly I was once again shaking and awake. Finding your entire body shaking you into being awake is odd and scary at the least. But they stop so suddenly and normality returns totally, I can even be asleep with in minutes, so they aren’t doing anything else other than just annoying me. I can only say from my side what these are like and how long they last, I could be unconscious and convulsing for longer than I am aware, but I really don’t think so. If they were true convulsions I would expect to have them during the day as well.
For now I see them as yet an other annoying thing my body has done to keep me on watch, you never know I might be bored one day by it all, so it has to keep working on surprising me. That is one of the joys of a progressive illness, it doesn’t just mean the symptoms you have keep getting worse, it also means that completely new things appear. It takes time to work out if they are symptoms or if they are something odd that could happen to anyone in the entire world, so you have to wait. If you don’t have a great ability to wait, don’t get ill. Waiting is the thing you do the most, be it for symptoms, doctors, diagnosis or any of it’s other joys.