This Sunday’s going to be my one-year Fit-iversary. For the last 363 days, at least twice a day, and often many more times, my tics have increased in intensity to the point where it looks like I’m having a seizure. I don’t lose consciousness, but my body contorts violently, I lose the ability to speak and people who aren’t familiar with what’s happening start to look worried. These ‘ticcing fits’ can last anywhere from a minute to well over an hour, and on a couple of occasions they’ve lasted much longer and ended with a trip to hospital.
My carers, the people who don’t generally look worried when the fits are happening, carefully record the length of each episode as well as making some observations about where we are and what time it is.
Ticcing fits are made up of a random selection of different (and often very painful) elements. After a fit’s finished my carer will use acronyms to describe the specific combination of elements they’ve observed. They jot these down on a sheet that I keep with me at all times. These acronyms include:
LOS – Loss of Speech
I nearly always lose the ability to speak at some point during a fit. When I do I have to use blinking or hand squeezes to answer simple questions: one blink/squeeze for yes, two blinks/squeezes for no. It’s not a perfect system because I often blink a lot uncontrollably and don’t always have reliable use of my hands.
CT – Choking Tic
This is extremely painful and involves me gagging and retching like I’m about to be sick. It stings my throat and often makes it difficult for me to breathe properly.
BS – Body Spasm
I use the term body spasm to describe my entire body locking-up. All my muscles tighten and I end up locked in a single rigid position. This can be extremely painful, difficult to deal with, and it sometimes feels quite dangerous too. On a couple of occasions I’ve found myself face down on my bed with not quite enough air getting in for comfort. It’s impossible to call for help when I’m locked up so I have to wait for someone to notice the silence and come and check up on me.
There are other elements to the fits, but these are some of the main ones. Almost a year on, I’ve got used to them as a part of my daily life – they’re painful but reasonably predictable. But sadly, today I have to add a new acronym to the list, and it’s one that tops all the others for discomfort, pain and danger:
FBJ – Full Body Jerk
Although it sounds like something you might order from a Jamaican take away, I doubt it’d be a very popular choice. An FBJ involves my entire body jerking around with a violent intensity that’s entirely new to me. My arms and legs fly in different directions, my head and neck shoot backwards and forwards and my spine curls and arches over and over again.
I had my first FBJ in the early hours of Monday morning. Leftwing Idiot who was looking after me that night had to lie next to me and hold my body as tightly as possible to slow the movements down and keep me safe. He’s reasonably strong but he still struggled to contain the violent movements I was making. We were both taken by surprise by the intensity of the fit. What was particularly confusing for me was that I’d been having a very happy dream about singing ‘Bob the Amazing Sheepdog’ with Captain Hotknives, something I’d done in reality not so long ago. The song was going round and round in my head for the rest of the fit.
When it finished, Leftwing Idiot could only put LOS on the sheet because it was the only element we could recognise but I realised I needed a new term to describe these super-vigorous episodes, and FBJ was born.
I don’t yet know what I’m going to do to mark a year of fits this Sunday, or what the next 365 days will have in store fit-wise, but I hope, whatever happens, that the FBJ era will be very short-lived.