On The Slab

When I have a seizure, (I have photosensitive epilepsy), it feels like,… a massive electric shock that shuts my brain and body down for usually 6 or 7 hours while Im usually unconscious.

When I wake, those 6 or 7 hours later, it feels like somone has used my entire body, every single centimeter of it, as a punching bag.
Its an exhaustion thats impossible to explain really. Its like LITERALLY being so tired that moving a finger registers as exhausting.

Then, after an hour or so, that feeling finally begins to wear off.

It screws up my sleep-times for a few days, and I end up awake all night and asleep all day, but finally, when it settles down, I get a sense of relief that “ok, now, it might be another month before I have to go through that again! PHEW!”

I try not to think of how dangerous these grand-mal (tonic-clonic is the new term I believe), seizures actually are. But a part of me knows that Im very lucky that I have woken up after each one. Mostly without injury save for a few black eyes, cuts, nose poundings and cut tongues.
The drugs are working in the sense that Im not having one *every* day, but they do seem frequent enough for it to be very problematic to living a day to day life in any kinda normal way.

They stop me doing things, for myself, for others, for our life, and that, is the truly disabling part. They mean I let people down, I miss out on important things, I dont do the things I should when I was sposed to do them, and a million other things…

If I had to, I would be willing to have them, if I could schedule them.
Every time I have one, it means that that month is going to be a mess of forgetting, frustrating tired anxiety for me. As I try and try to not let it make me stay in bed for the month in absolute fear and terror of having another.

But, I’m lucky enough that I have people around me who care enough not to let me be that selfish. And thats what it would be to me, selfishness.
I live this life, with these people, for however long Im around thats whats important, being with the people I love….. “with“, it means alongside, if I dont live alongside my friends & familly, then Im hardly living with them imho.

So I have to keep fighting the fear of the next seizure I suppose, no matter how exhausting it is to do so.
The worst part of my seizures, isnt having the seizure, or the cuts, bruises, bangs, exhaustion, pain, etc…..

The worst part, is waiting for the next and remembering that yes, it is gonna come, whether I like it or not.

But until then, I want nothing more, than to be “with“,…. there is time enough to be without in the next life.
I want to make the ab-sol-ute most of every second I am here and I am conscious. I have to, because, if I dont, then why bother.

If I’m alone, whether its just sleeping weird hours, not keeping the same hours as every other normal person.
Or indeed, cowering under the duvet worrying about how long it will be before the next seizure.