I discovered just the other day that it’s ‘Invisible Disabilities Week’. I know, pretty much every cause seems to have either a day, week or month – so it’s hard to keep up!
But this hit home with me, as I live with an invisible disability: epilepsy. And while I’m usually pretty upbeat and positive about my condition, the last ten days or so have been a lot more difficult.
After a long period of absolutely no epileptic activity, I’ve had two seizures in just a few days. One while live on a webinar, one while standing on the DLR coming home from work.
I don’t experience what most people imagine when it comes to epilepsy. I don’t have tonic-clonic seizures where I fall to the ground and shake. Instead, mine take the insidious form of complex partial seizures, where I zone out as my brain resets.
It’s incredibly hard to describe the experience, but I use computers as an analogy. It’s like pulling the plug out of the back of a desktop computer and then waiting for it to start up again. In quick succession, I lose the ability to read, and then to speak. I can still hear and see what’s going on around me but confusion seeps in like a thick fog.
It’s an interesting – if horrific – experience. The text on the screen in front of me, or the book I’m trying to read, suddenly becomes incomprehensible. As if I’m reading a foreign language. I can make out individual letters sometimes, but there’s no way I can understand or read aloud the words they make up.
Then there’s a horrible wave of anxiety washing over me – a feeling that something dreadful is about to happen. It’s paralysing. Like something from a nightmare, except it’s happening in real life.
No matter how much I want to, I can’t speak coherently. If I’m with other people, I end up breaking into a rictus-like grin and stare into the middle distance. If you didn’t know me, you might think I was day-dreaming. You might be suspicious that I was mocking you due to the face-pulling.
It can take anywhere from a few minutes to the best part of an hour before I’m feeling sharp again, but I’m still left with a seizure ‘hangover’ and usually end up sleeping it off.
At a minimum, I lose a few hours of work, sometimes an entire day – especially if I have more than one of these seizures within a couple of hours of each other. The headache is dull and throbbing, I sometimes feel a bit depressed and don’t really feel myself again until the following morning.
More than that though, is the anxiety that it will kick off again at any time and derail my day. It’s draining and an almost constant concern. Especially now.
Patience and compassion
So what works? I try to take things slow, minimise stress, practice self-care and get plenty of sleep. It’s not completely in my control, but if I look after myself, I’m generally able to avoid seizures.
The last couple of weeks reminded me that life is tough right now, that my sleep has been really disturbed by my old friend insomnia, and that I need to prioritise rest and relaxation again for a while.
Easier said than done in the middle of a global pandemic.
Anyway, epilepsy is the most common neurological condition in the UK, so there’s a good chance you know someone living with it. I’ve been fundraising for Epilepsy Action for years, to help them provide information about the condition and combat misunderstandings.
Writing about my experiences on thus blog is also a way of helping, I think. I’m not ashamed of it. I want others to understand it. Writing can also be cathartic, even if nobody reads it!
But saying that, I’d much rather that my brain behaved when I need it. It’s kind of important…