Last Monday night something happened that terrified me. It’s taken me a while to write about it because I’ve been thinking it over, and because I didn’t want to worry anyone.
But I’ve decided to share it today. As you probably know, I’ve had ‘ticcing fits’ several times every day for over a year now. They can happen anywhere at any time, including while I’m asleep. Because of this, there’s always a support worker at the castle at night to help me if I have a fit.
This support is provided on rotation by a small group of people. Usually they don’t need to get up more than a couple of times a night, so they’re able to get some sleep. If I need them I press a buzzer, but if my muscles have locked up I’m not always able to raise the alarm in this way. Usually though, my support workers wake up when they hear the repetitive ‘howwing’ noise I make when I’m fitting.
Last Monday Leftwing Idiot was supporting me when – during the night – I woke up having a fit. I’d locked up and couldn’t move, but the extra problem with this particular fit was that I found myself on my front, face down. This made it very hard to breathe. I wasn’t just worried about the pillow in my face because the weight of my body was stopping my lungs working properly too. I’ve found myself in this situation once or twice before, but never during the night.
Thinking about it now I’m surprised I didn’t feel more panicked when it started. I remember knowing I was in trouble, but I also felt strangely calm. I wasn’t able to move at all, so there was no way I could reach the buzzer. To start with I couldn’t make a sound either, but eventually I managed a very soft noise. I tried to increase the volume, but without enough air in my lungs, this got increasingly desperate.
I remember starting to think that it was time to give up. Thankfully I didn’t and I managed to make a noise loud enough to wake Leftwing Idiot up. The sense of relief I felt when I heard him get out of bed and walk down the corridor was immense.
He came in and immediately turned me over, asking ‘How long were you like that?’ He stayed with me until the fit had finished and I was able to move my arms and legs again. I felt scared when he headed back to bed and I found it hard to get back to sleep. I tried to think of ways I could prevent myself from rolling onto my front again – in the end I put a load of pillows around me. I doubt they’d have made much difference, but it made me feel more relaxed nonetheless.
In the week since this happened I’ve thought about it every time I’ve gone to bed. I’m hoping it will be a one-off, but if anyone has any bright ideas for ways to prevent it happening again, I’d be very interested to hear them.
“Ice cream donkey shower, on the feast of Stephen.”
Scary. Is there some kind of alarm that could
go off if things are silent for a minute or two?
Just a thought.
Check with the occupational therapist. They may be able to come up with some good ideas.
silly sally says:
Maybe a mesh pillow (like http://www.made-in-china.com/showroom/jasmine00032/product-detailOqdmIHKUMyhl/China-3D-Mesh-Pillow.html) would work.
Another more extreme idea is to find a blood oxygen monitor (http://en.wikipedia.org/wiki/Pulse_oximetry) which has an alarm.