I don’t know how to write about the last couple of day, or actually, even where to start, as, in many ways, this all started about a week ago. I know that I have written about all the stress and tribulation of going to the hospital and finding that the tiniest muscles in my face can really destroy you, but there is has been other things taking place, things I was ignoring as I didn’t want to believe they mattered. I’m not sure of the exact day, but I think that it was probably Friday of last week, that I started to find that my arms just weren’t up to doing the limited things I required. At first, it was just this feeling of them becoming tight and stressed. I had to keep stopping and shaking my arms out in the hope that they would carry out the next action without complaint. As the days have ticked on, it has become worse and worse. Even something as simple as clicking my mouse, made my arms feel as though they were going to explode and that I wanted to scream. It wasn’t pain, just a tension that stopped me from living my normal life.
Both of my arms are affected and as I spend nearly all of my day on my PC, well, it was just a matter of time each day before I reached that point, where not just my arms, but I wanted to explode. When your life is limited, and something is doing it’s best to remove even that little that you do have, well, frustration and anger grows quickly. The actions that I am able to complete, are all now stilted and so much slower than I am used to. In the past, I have been used to just my left arm causing me problems off and on, but this time, it is both of them, and that isn’t funny in the slightest. I have literally been sat here in tears, doing my best just to copy past a name off twitter into my spreadsheet, or whatever it was on my spreadsheet into to twitter to send. The tiniest action felt almost impossible, and each one caused the internal tension to grow and grow.
It wasn’t until this Thursday that I really started to take it seriously and to face the fact that it wasn’t just something and nothing, this was something that was totally unignorable. The exhaustion that I thought I had caused by doing just a few facial exercises, was being made worse by every tiny thing that I did, including just trying to hit a few keys on this very keyboard, I’m sat at now. My hands seem to be tingling all the time and my level of feeling I have in them, keeps coming and going. Both of them are also shaking whenever they take the notion, something that is a touch upsetting when you’re trying to light a cigarette or have a drink. It was on Thursday, for the first time ever, I had to switch off my PC just after 4:30, I couldn’t manage anymore, normally, I’m sat here until about 6:30. All I could do was just sit on the settee and hope that resting would bring them back to me. It didn’t.
My left arm is affected from my shoulder down and so far, in my right arm, it is just from the elbow down. There is no way that I can lose one, far less two, after all, they are my only mode of transport these days, there is no other way to move my wheelchair and I don’t dare to use my legs. Stopping and resting may sound like the answer, but as soon as I am motionless, they start shutting down. I can feel it starting at one point, then just spreads and spreads, taking them over totally until they just feel dead, although, I can actually still move them.
When I woke on Friday morning, my left hand was close to useless. I had to coach it into doing what I wanted, but it was once again a slow and daunting process. It was so bad, that I knew there was only one thing to do, to call my Dr for another round of Steriods. He has prescribed me another round of, and I dare you to pronounce it, 500mg once a day for 5 days of, Methylprednisolone, yet another mouthful in more than one way. At this moment, I am without a doubt, losing my hands and I am not going to let a flare take them aways from me as it took my left-hand years ago. Without a doubt, this was the wrong time for me to have gone through all the outings and so on, that, I have in the past week or so. I have been over stressed again and again and my body is once more showing me that I am not up to it and it really doesn’t like it. I have managed in the past to take high dose steroids without much of an issue, although I know that many find them horrific, to me, the worst thing about them is their taste. I don’t know how they do it, but the second they are in your mouth, there it is. It doesn’t matter how quickly you swallow them, or how much liquid you follow them with, that damned taste is there in your mouth, and it’s foul.
Adam was at home on Friday, because we had the visit from the Social Services, something I will write about in my next post as there is too much to tell today. His being at home, though, meant that as soon as he was free, he could take a taxi down to the doctors, fetch the prescription and head home again. I have to take them just once a day, but it does mean, an extra five tablets to swallow, as if I didn’t have enough of them, to take anyway. It is very much a case of swallow and hope as it isn’t a written guarantee, that anything will improve, just my best shot. When I spoke to the doctor he told me to give them for three days and if there wasn’t any sign of improvement, I will need to get in contact with the MS Nurses at the hospital. I know already that that will be a more than interesting conversation since I haven’t been there for about 8 years, I’m just hoping that I don’t have to make it, or when I do, I don’t land up again in their clutches.
Please read my blog from 2 years ago today – 05/06/2014 – Time to kill the bedside
One of the problems I have had all my life is an enquiring mind. I know that many won’t see that as a problem at all, but trust me it is, as it has managed to cause me more strife and lost friendships than anything else. I have always soaked up information, stuff that most people forget or don’t even listen to, in itself that can be a good thing, but the downside is that I have never understood……