My tremors are back. It wasn’t hard to notice that they were gone, although I don’t remember totally when they vanished. The closest my memory gets is when I became housebound, but with only one functional hand at the time, I had far more to concentrate on whether or not the remaining hand was shaking. I thought there was a mild sign yesterday, but it was just now and then and nothing solid enough to actually call tremors, more hesitations. My fingers seemed to have started stuttering, a clear shaking motion when I reached for something or found myself thinking about which key on the keyboard I was going to hit next. For years, I have had twitches in my fingers when I try to hold my hand out in front of me. They just won’t stay still and flick from side to side or up and down at will. This though is different, it is there whenever I try to reach for something and not just in my fingers, it is my entire hand. I was reading back something I had written yesterday afternoon when I became aware of a clicking sound. It was my nails tapping on the keyboard as my whole hand and individual fingers where jumping and twitching. Then again last night while watching TV, there was a clear action in my hands when they were supposed to be at rest. I thought last night that it was simply because my arms were fatigued from my first couple of days in my wheelchair, but it was there when I woke this morning.
I can’t help wondering if fatigue was the reason for it in the past. I couldn’t for the life of me put a date on when it first started, but I know when it vanished, once I wasn’t using my wheelchair. Two days after starting to use it again and here it is, twitching and jumping away to themselves as though it had never stopped. I am totally sure that it has been there on and off between then and now, but it is too much of a coincidence for it to not have a connection. Fatigue has to be playing a large part in it. Something about the overuse of my arms has to be behind it, as I do clearly remember have short-lived spells after the shopping arriving and the other week after making my Psyllium pancakes. There has to be a connection, not that it helps much as none of us have a choice about using our arms or not, that’s what they are there for. No matter how annoying the twitches are, they are at least totally harmless.
I may not have actually hit any doors or furniture yesterday, but I don’t have a single knuckle left that doesn’t show the results of my many close shaves. There is a growing pride in navigating the house safely, yes, the loss of some skin and a few more bruises to me, is preferable to scrap marks or chips out of my home. But the reality is that the chair I have is too big for this house, not because of our furniture but because of the doorways. There isn’t one door frame that I haven’t made knuckle contact with at some point, so I will be discussing the possibility of a new chair with the MS nurse when he is here next week. I have to say, if and it is a big if, the NHS will give me an electric chair, I will be more than happy. When it came to bedtime last night I knew I was tired and so did Adam as he offered to give me a push. No, I didn’t accept, on the basis that if I don’t get a different chair, my body will have to get used to this. It has highlighted to me just how physically weak I have become, my whole body is reacting to this new venture and not in a good way.
When you live in a limited space with a body that really isn’t being asked any longer to do much beyond just exist, your entire body starts to shut down. I have been able to see the muscle wastage for a long time. Some by the fact that all I see is skin and bone and other areas because all I can see is unsupported flab. I have to say I have a preference to the skin and bone, but that’s just vanity. My body now sees just sitting as work and that isn’t a joke. I have no doubt that just a few months in my chair will reduce my legs, just as it did before. A few more and my ability to walk won’t just be shaky but probably incredibly hard and that is the reason that I fought against this move for so long. Life in a wheelchair is a danger in itself. It weakens and closes down parts of you that for our own good really should be used. Every time you stand up, or sit down, whenever we walk, even over short distances you are using muscles in your pelvic area that help control both you bladder and bowels. It assists with digestion and strengthens all those tiny muscles that support our back and forms our core strength, the knock on results are huge, especially in an electric chair. At least in a manual chair, there is a lot of good exercise for our upper body and it provides a good cardo-vascular work out, if you are in big enough spaces, not caught in a tiny flat. My desire to at least try to use my manual one is really for my own long-term health, but the realities of using it are just too hard. All yesterday afternoon and this morning my diaphragm spasms have been over active and that pain alone makes an electric chair sound good, without all the other reasons I could list.
I have seen on TV that there are now a huge number of electric scooters being used by not just the elderly, who admittedly may find it a great aid, but by a huge number of people who I don’t think really need them. I know all too well that you can’t judge by appearances alone, but it just doesn’t add up in my mind. It isn’t as though we saw thousands of people in manual wheelchairs years ago before scooters existed, nor do the NHS supply scooters, other than in very rare situations. I had to even fight to get my manual chair as I didn’t need it in the house, it was so that I could continue to work. To them, the point of supplying these aids is to make basic life possible, mainly in your home. Going out and about socially is a nicety, not a necessity. I got it because without it I would have had to give up work, that made it a necessity. Electric scooters are too big for use indoors, so why all the electric scooters? All I can think of is laziness, especially by the large number of overweight younger people I have seen using them. It doesn’t take brains to work out that it is easier to get around on an electric scooter or electric wheelchair than it is to walk, but no matter how difficult, walking is good for us. I may not have walked that much, but even the little I did would have had it’s benefits, otherwise the OT’s who have been here over the years would have possibly suggested one, none did. Now, I am hoping that they will see it as a necessity, not a nicety. I just wish those who are acquiring scooters just realised the harm they are doing to themselves and got back on their feet while they can. Walking can be painful, it can be exhausting, I like millions of others have lived that way for many years, but we weren’t born with legs for no reason and it isn’t just for getting around, it’s part of the health of our bodies. If the NHS don’t give you a chair, it’s because you don’t need one, so please, please keep walking.
Please read my blog from 2 years ago – 17/09/2013 – The force of family
I seem to have set up an on going theme, that I write about everything in here without actually talking either to Adam or Teressa before. I know I do it and I have wondered why, especially as I have at times upset both of them by doing it, but it isn’t meant in that way at all. I suppose it is….
I believe every word you say, I don’t usually trust ppl but you Pamela, I’m with heart all the way long .
Excuse my English it’s limited 😉
Hope you will love and courage on this simple words .
4:00 AM THIS MORNING I WAS THINKING OF YOU; AND HOW I COULD( (WITHOUT BEING A PAIN IN THE BUTT)),TELL YOU TO START CHECKING OFF BOXES FOR AN ELECTRIC WHEELCHAIR,YOU ALREADY KNEW THAT…THE SCOOTERS: ONLY THE LOUD AND LAZY HAVE ONE. MAYBE 10%, REALLY NEED ONE, WHICH, LIKE YOU SAID, MAKES IT HARDER FOR THOSE , WHO REALLY NEED ONE. YOU SEEM TIRED. GET REST AND I’M SENDING GOOD THOUGHTS; SO YOU’LL GET AN ELECTRIC WHEELCHAIR.WITH ADAM’S HELP, YOU CAN STILL WALK SOME, JUST SO YOUR MUSCLES DON’T STOP COMPLETELY.
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The NHS wouldn’t give me an electric wheelchair for the same reason. The manual one they gave is only useful if I have someone to push because the state of my fingers makes it impossible to wheel myself. I have a mobility scooter which I bought second-hand and has been a life-line. But as you say, not walking enough is a real problem. As for those who buy scooters for no reason at all, words escape me.
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I think the rule is if you have a something that resembles two legs, then your OK. Fatigue isn’t a reason? I never got that one as the worse the fatigue gets the worse our health gets. Having a chair that suits our needs, not just our obvious ability or disability could actually improve our overall health and our drain on the system as time goes on. Thinking forwards doesn’t seem to shine big in their reasoning.
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Not thinking forwards nor remotely sensibly. And as for the general public… I was once outside Richmond Theatre during the interval and when I crossed my legs, you should have heard the mutterings and tut-tuttings. There’s only one reason to be in a wheelchair and that’s if you’re paralysed. If only they taught imagination and compassion at school!
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IN CANADA, PEOPLE WITH A “DISABILITY” GET A SCOOTER FROM GOVERNMENT. THEY ALSO GET GOVT. CHEQUES .MY NEIGHBOURS DANCE IN THEIR YARDS, THEN SCOOT TO THE BEER STORE. IT MAKES ME SICK. WHO SUFFERS??
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Appalling, just appalling. I despair.
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