I’ve had spasms and hypertonicity since my accident. I like to think the intensity comes in peaks and troughs. There’s certainly no medical explanation for them. Not even an understanding of which direction the (garbled) message is coming from. Our bodies are a complicated beast.
As an inpatient at the PA my restless nights led to special boots being made to try and stop my feet from crashing into each other. Not very successful. After about 6 weeks of sleepless nights, one of my room mates had had enough, and dobbed me in. So a sleep study was organised.
It happened to fall on a day I washed my hair. If only I’d known. Lots of balls of bluetac sticking wires onto my head made that a pretty pointless exercise. I was set up in a pitch dark room, where I’d spend the night while they measured my brain activity.
Of course, the machine was faulty. Which meant being woken hourly so they could tweak it. Also faulty. The next morning they told me categorically that I had issues sleeping, and restless nights. Really??
My spasms had variety. There was the foot flap, which would have a good go every 8 seconds or so. There was the monster. My entire leg would shoot out into hypertonicity, with pain running from my injury down my leg to my toes. This one really told me I had muscles in my legs. The kick, pain from the hip down while my leg kicked out from the knee. And the stomp. A pared down version of the monster. Less intensity, more regularity.
The cocktail of drugs wasn’t helping. The knock to the head meant doses had to be kept very low. A couple of different trials of sleeping tablets also didn’t work. They may have made me tired, but my legs weren’t getting that particular message.
“Anger didn’t help either. By the early hours of the morning, when I had already spent hours trying everything I could to stop the spasms, anger was pretty much all I had left.”
I weaned myself off the drugs on October 2015. Did it make a difference? Not that I could tell. I did finally come to the realisation that anger was not my friend around this one. At all. You know when you get dumped by a wave, if you fight it you suffer. If you just go with it and let the roll happen, you recover a heck of a lot faster.
This is a bit the same. Hard as it may be to do at 3am, I go with it. There really is no point in fighting. I even try to work with it sometimes. This morning was a breakthrough reminder of how powerful that can be. It’s 4:45am and the foot flap has been going for a while. I’ve emptied my bladder, stood for some weight bearing, even squatted flat footed to get some relief. None of it worked.
I know that it’ll stop when I get in the chair. Let me tell you, that’s a really hard thing to NOT be angry about. So I know I’m getting up soon. Flap, flap, flap. In a break between I try to get the foot to do what the flap does so well, and have some dorsiflexion. On my terms. It works. Once.
I keep trying. But once is enough. Today. I know I can. So I will. Keep trying, at least.
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