Adam spent all of yesterday afternoon with his mum. Now that she no longer stays in Glasgow it meant an hour’s train ride, followed by a half an hour on a bus, just to reach the hospital. It’s not surprising he had to take a day off, just to be there for afternoon visiting hours. He actually for once managed to work out the whole timing of his day very well, as he was back here about the time he would be any work day, despite the trains being off on the home journey. Apparently, his mother’s operation went well. Bright but tender is probably the best way to describe how Adam found her. She is expecting to be in the hospital for another couple of days, and it will be two weeks before she has the results of the pathology. I’m not sure when she will be starting her chemo but I would expect they will give her a week to regain her strength before hitting her with that one.
After writing my post yesterday, I had a rapidly growing feeling that my left arm was taking huge exception to my describing it as old. It was once more feeling sluggish and not quite as though it was part of the rest of me. It’s not something new in any way what so ever. Ever since it decided to die on me just over 9 years ago, it has felt like this on and off ever since. The doctors didn’t have the slightest idea, if, my hand would ever recover, but it did. Over the following year, it slowly returned to what I would call, usable, but annoying. When it is playing up, my hand is the most obvious problem to anyone looking at me, as it often twitches and just loves dropping things. To me, the part that I am always aware of first is a long way from my hand, it actually at the top of my arm. Just like a cuff, there is a band that seems to close around my upper arm, if I were going to compare it to anything, I would say it’s like an invisible and slowly tightening hug. As it builds, I slowly start to have problems with the rest of it. Normally, the first thing I am aware of following that is changes in sensations in my hand. It can vary from numbness, to pins and needles and sometime’s, actually pain. Following that, it is the sluggish movement, that is when I start to get annoyed with it, especially when I am typing, as it causes a rather large number of errors, that have to be constantly corrected.
Just as my entire body has been rapidly showing signs of progression in the past six months, my arm is complaining about life more and more. I can’t make up my mind, if it is just my PRMS, or if part of my problems are being caused by using both my wheelchair and the grab rails, in the bathroom. The amount I now use my arm and the ways that I use it has changed dramatically, and I am no longer sure that it is up to it. A couple of nights ago there was a classic example. I had woken to go to the loo, then I headed into the kitchen. Instead of just lighting a cigarette, I decided to have a sip of some cold ginger beer. I manage to get the bottle out of the fridge, but then, my arm just died. My hand and the bottle plummetted from being held out almost straight ahead of me, to flying towards the floor. The bottle bounced off the rim of my wheelchair, smashing the cap and sending the bottle from my hand.
I was just sat there, staring at the mess on the floor, glinting in the light from the LED on the cooker. I was trying to work out how on earth, I was going to clean it up, or if I couldn’t, make it obvious to Adam, so he didn’t slip in it when he next came through. I didn’t have to worry, as I’d made so much noise, that there he was in the doorway, once more to my rescue. Once more my body had failed me, and it was down to Adam to sort out the muddle and mess it had caused. I am seriously beginning to wonder how long it will be before it fails me totally again. It was the original cause of my having to stop going out, even to work, the only place I went by then. The office I worked in had three slopes that with my hand in its useless state, I simply didn’t have the strength to manage them. If it did go again, I know from that experience that I could still manage my chair on the level, so the house shouldn’t really be a huge problem. I say shouldn’t, but I’m not so sure about the maneuvering around the tight corners. So many things have happened to me in the last few months, that it really wouldn’t surprise me if it I woke up to find it dead again any day soon.
There isn’t a single thing that I do now, that hasn’t been changed by the array of disabilities, that have been thrust upon me. It started year by year, but it has narrowed to month by month and yes, I do know that worrying about it, isn’t going to help, or stop any of it from happening. It really does feel now as though every part of me is being nibbled away at, this new level that my life has entered, is, beginning to feel somewhat oppressive. Even when I am totally occupied, doing something that has nothing to do with my health, I still feel as though I am in this position of just waiting for that next step, whatever it happens to be. In fact, I really do feel as though I am just waiting, it almost feels as though me the entire purpose of my life now, is to wait. It’s all about what will happen next, what will my body do next, rather than what is happening now, and not just to my arm, that is just an example. I suspect that this paragraph won’t make a huge amount of sense to some of you, as I have never felt this way, at any other time in my life. I may have accepted where I am on the path of my health, but that place, is somewhere totally new.
Please read my blog from 2 years ago today – 06/05/2014 – Becoming locked
Normality has been restored, Adam is back at work, which means I can have the TV on at a level that I can hear it and pay attention to what they are saying, whilst doing something else, like this for example. It is the only form of multi-tasking that I still do, I used to always be doing more than one thing at a time and this restriction on my life was actually really hard to accept for a long time. I can remember times when I was cooking a meal, working on knitting something, usually Arran or Fair Isle, watching the kids and listening to the TV and I was able to be spot on with all of them. These days, this is the closest I get to anything like that and even then I often find now that I have lost track with the TV, but the good thing these days is that even live TV can be wound back to the point you lost it. I know all of that sounds really trivial, but to me it is the everyday thing that reminds me that my brain just doesn’t work the way it……
As someone who cannot do a single GD thing with my left arm, I hear you. I was on occasion a left-handed check out chic in my youth and after treatment there were days I could do up my shoe laces and my bra. But now, nothing. I have experienced a short term stint of rehab called Hand Hub. And the trial had participants who had stroke, MS, or anything. Can I recommend the software to you? It’s from a New Zealand company and can assist with muscle stuff. It’s fun, I promise. Good luck. With love
I’d be happy to take a look, anything that might help 😀
I think I might get where you are coming from with the ‘what happens next?’. I battle living in constant fear asking myself what next? Another dislocation, horrific and torturous chest pain, sudden and severe abdominal pain, an ice pick to the head, blacking out, etc? I feel like I’m being abused and my abuser is always right beside me where I can’t see him waiting to strike me harder. What will he do next? What independance will he take from me today? I also frequently wonder for how much longer can I endure this since there are no other options. But I just do it, I just trudge on. I don’t have a choice because suicide, no matter how tempting to me at times, is just not an option. So trudge on it is. Besides, there’s still sunsets to watch and sunshine to soak in. And who knows? Technology is growing exponentially fast, there might actually be a cure in my lifetime or at least good treatment.
I’m really impressed with how you handled everything and impressed that you have come this far without feeling oppressed until lately. You are so strong. I hope that where you are accepting your place with your health, is a good one for you and bids you less stress. Coming to terms is insanely difficult. I firmly believe it can easily cause insanity. Also, Adam seems like a great guy. I’ll pray for you guys. I really hope you sorta plateau for a while soon; I hate hearing that things are progressing rapidly. (((Hugs)))
I’m sure that there have been many who have either been drive insane or to the edges of it. How we get through it all, is intensely personal. I have often wondered if the abuse I lived through in my early years, actually gave me the strength that has helped me get this far, along with my love for Adam. You too have something inside you, that keeps you going, too. Whatever it is, they are ours and ours alone, which is why giving advice, doesn’t really work. Examples can guide but straight advice, well, I don’t think it helps anyone for that reason, we all have that personal drive, unique to ourselves. I hope yours stays with you (((Hugs)))
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Well put and thank you. I think it’s highly plausible that what you went through toughened you up for later in life and love (to me anyhow) is the most important and strongest thing of all. Not that you need me to say it but you’re quite lucky to have each other.
My drive may go into neutral sometimes but I won’t lose it, it always shifts up again somehow and always has. Plus, I have my significant other’s love and help as well 🙂
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