It’s 3:30am. After struggling for hours to get to sleep because of the pain in my hands, which inexplicably locked up yesterday, I eventually drifted off. When I woke up an hour later my hands had softened and I was able to move them once again. This was a massive relief. Fat Sister, who was sleeping nearby, stirred and asked if I was alright, and when I told her my hands were OK she said she was glad and that she’d hoped a bit of sleep would re-set them.
But even as she was turning over to go back to sleep I could feel my thumbs drawing into my palms again and seconds later my pliable hands had turned back into rocks.
I reached out and manoeuvered my laptop onto my bed and searched online for “dystonia and sleep.” It seems that it’s quite usual for dystonia to ease at night and return within minutes of waking. At this point I started to sob.
I might be jumping the gun – it’s not even been 24 hours yet – but I had a horrible thought that this might not be just a temporary thing. I lay trying to contain my sobs as I ran through what it might mean. Top of my list of worries was the implication for my mobility. This might not seem like an obvious concern when it’s my hands that aren’t working properly, but without them I can’t move my wheelchair at all. My new chair’s given me amazing freedom of movement, and as I lay there with my two hands turned to stone I felt that freedom slipping out of reach once more.
Fat Sister heard me crying, jumped into my bed, and gave me a comforting cuddle. She told me that whatever happened I’d find a way through and reminded me that I’ve faced upsetting and shocking challenges before and have always adjusted to deal with them. The tears slowed – and just as well because it’s hard to wipe them away and blow my nose without working hands.
I decided that rather than go back to sleep straightaway I’d do what I’ve done at every challenging point in the last four years: write about it. Maybe in the morning my hands will soften properly, but if they don’t it’ll be time for me to get to know them from scratch and work out what they can do.
To get us started, here’s a proper introduction to each of them:
My left hand’s the tighter of the two and looks a bit like a shadow puppet elephant. My thumb curls into my palm making a strange fist – the elephant’s head. My index finger sticks out in front and still has some voluntary movement, so it waves out in front – the elephant’s trunk. My little finger is curled up into a mound that sticks up – the elephant’s ear (it would have to be an Indian elephant because they have the smaller ears). My wrist’s locked at a right angle but I can sometimes move it a little.
My right hand has more movement than my left. As well as using one finger from it to type I’ve also strapped my emergency buzzer to it so I can call for help if needed. This is my swan hand. I can straighten out all my fingers fairly easily – making a majestic beak. My thumb has less movement and hugs my hand closely, making a convincing swan’s head. I can move my wrist a bit, but it’s quite slow and stiff. This is the hand I can still make work for some things a bit because it still has some grip.
I feel calmer now. I much prefer thinking of my hands as unexpected shadow puppets than as lifeless rocks. I also know that if my hands do remain like this I already have lots of the support I’ll need to help me manage. And anything I don’t have I’ll be able to sort out with the help of professionals, my friends, and family.
While this certainly isn’t the end of year I had in mind, it isn’t the end of the world either. It’s something that I’ll need to approach step by step. I’ll keep you posted on any progress with my shadowy new animal companions.