I hate me

I thought I had seen everything that my body could do, that was until the other morning. I had woken with the alarm clock and just as normal, I swung my legs over the edge of the mattress, and I placed my feet not quite on the floor, but a fraction of an inch above it. I always sit there for a few seconds, just long enough to be sure I am safe to start getting dressed, it was then that it started. My feet were dancing. Well, they weren’t sitting still, that was for sure. They were flicking up and down, bobbing and twitching from side to side, and I couldn’t stop them. Well, I could, when I pushed them into the floor, but if I just let them be, they danced. I have seen tremor, spasm and so on, but what I was seeing, wasn’t like any of them. It was as thought they had totally independent lives from the rest of me. From my hips down, each leg was bobbing about as thought they were insane. I sat there just watching them, for about a minute or so, it was quite honestly fascinating. I know many wouldn’t have seen it that way, but when you have lived inside a body that does so many odd things, to find a new one and one so detailed, I was fascinated. Eventually, I took control and dressed, somewhat awkwardly, as getting my legs into my trousers was a more than interesting experience, just as putting my socks on was, but I got there.

To be fair, most of my body was a little on the jiggy side, which meant the start of my day was more than just interesting, it was frustrating. Even using my computer mouse wasn’t like most mornings, it appeared that my body had lost all memory of fine motor skills. The cursor frequently flew across the screen in front of my eyes, in response to my involuntary jerks. It didn’t matter if it were my feet, my hands or even my head, nothing wanted to sit still and nothing happened with ease. Clearly it was going to be an entertaining and frustrating day, all rolled into one. I have lived for years with the twitch in my spine that means I jig around when sitting, but usually the rest of me is controllable. Yes, it does get annoying at times and I do get incredibly fed up with my upper body bouncing around, but I can control it. My favourite trick is to push my spine onto a solid surface or to squash myself into the corner of the settee. That way I am trapped and the unwanted movements are restricted. To apply that trick to every twitching part of me, I would have to return to bed, something I had no intention of doing. Sitting at my desk, helped a bit, but I couldn’t just sit here, feet flat on the floor, back shoved into the backrest and my hands flat on the desk, any more than I could go back to bed, there had to be another answer.

Relaxation is another thing that works, but it’s not practical if you want to get on with life. Which was exactly what I wanted to do and did. To my surprise, other than typing, I managed reasonably well. I honestly thought that there was no way of living normally with your body doing so many crazy things, but you can. OK, if someone had been watching me, it would have looked wild, but even though everything took a bit longer, it is still possible to keep going. I have seen people on TV with server twitches and wondered how they kept going, now I know. All you do is ignore the madness and do what you always do. Visually, the maddest thing had to be when I was in my wheelchair. My feet don’t actually touch the floor, they sort of dangle below the cushion. I took the foot rests of months ago, as it reduces the turning circle, something which was much needed in the house. Giving my legs freedom in that way was bizarre, they were flying all over the place, bashing off each other, the wheels and anything they could reach. I didn’t need a mirror to know how stupid it must have looked.

This first attack was three days ago. I have no idea what started it, but I can only guess that it is the next phase of the flare that started a couple of weeks ago, and possibly a new lesion on my spine. From its start to now, I would say that I have had maybe five or six attacks of full jigging. They seem to last about an hour or so, then slowly quieten down until they stop. All apart from the one I normally live with. I have had a couple of occasions where it all got too much, yesterday, I became so frustrated trying to type, that I actually did scream out loud and smack my hands off the keyboard. No it didn’t achieve anything, the twitching was still there and my fingers were still refusing to do as they were told, but I have to admit, I did feel better for it. The second one was even worse, and it saw me scurrying off into the bedroom. I had to lie down, to pin all of me to the mattress and take control of every annoying muscle. Lying there, I was free to use not just the pin-down method, but to also apply relaxation. I lay there for about half an hour, calming myself down, and slowly finding peace in my own body.

I have no way of knowing if this is another new normal, or if it is going to be one of those short-lived annoying spells that will fade and vanish as quickly as it started. It doesn’t need a genius to guess which I would prefer. It is as exhausting as it is annoying, but there is nothing else I can do about it, other than going with the flow. There are days when I really hate my body, and this is one of them.

 

Please read my blog from 2 years ago today – Lobe loss

I received a letter from the doctors yesterday, they are sending out the MS Support Worker for their annual visit. I thought a support worker was supposed to be the person you called when or if you need help, it was only when I reached the bottom of the page that I found for the third time in three years, my support worker has changed. I know these things happen, staff change constantly…..

18 thoughts on “I hate me

  1. Hay sounds really frustrating! It’s really inspiring to hear how you managed it and gives me hope that no matter what happens we can still find a way to keep going xxx

    Like

  2. How strange let’s hope it’s short lived and will fade and go away. Every day is such a challenge with Chronic illness. I agree with Billy we all mange to find a way to keep going despite the obstacles. x

    Like

    • It isn’t that strange for someone with progressive MS. I went into a flare about two weeks ago, it is highly likely that this is just another part of it. Right now, I am dancing all over the place, but time will tell, it may die away, or may be just another part of my life. We all have to keep going, the other option, isn’t worth thinking about. ๐Ÿ™‚

      Like

  3. Sounds delightful! (Yes, very dry sarcasm) I’m really hoping you still have more good days than bad………here’s hoping. Maybe, love your body, just hate what is happening to it. It is the only body you have!

    Like

  4. I have fibromyalgia and this happens to me quite often. My legs bounce about a foot off of the floor. It started with my hands. Sometimes they shake and tremor so bad that if I am holding something I will drop it. It happened with my head once. It is very unnerving and irritating. But yes, we must go on.

    Liked by 1 person

    • Like wise, it also started in my hands and as I said I was used to it in my spine, so I guess it was just time. When my legs joined in, I found everything joined in. Although not so violent, I had it all day yesterday, but we have to go on, life doesn’t just stop. Don’t take this the wrong way, but I’m glad to know that I’m not alone. (((Hugs)))

      Like

  5. I’M SORRY. SINCE I CAN’T KEEP UP WITH YOUR POSTS;((1-2 DAYS A WEEK, I GET A “NORMAL”DAY)) I’VE BEEN SENDING YOU COMMENTS, THAT ARE DUMB AND DUMBER. P.S DON’T HATE YOU; WE ALL LOVE YOU

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s