Because my brain’s been so screwy and I’ve been having so many seizures lately, I barely left the house this past week. I had 4 days holed up inside.
Finally, my seizure total for the day lowered, so our plan to hide away & let it reset worked. Just over a week ago I was having on average 24 seizures a day, after hiding indoors this lowered to 14 🙂
It definitely helps that we’ve discovered the room upstairs doesn’t trigger my seizures much at all. We basically live in one room of our house (because why move about and have to deal with lighting triggers?!), we were originally downstairs as that’s the biggest room in the house, but even with blackout curtains and strategically placed lamps it triggered a lot of seizures. Upstairs is SO MUCH BETTER. And weirdly it’s lighter up here, but because of where the light is it’s not a trigger.
Today though I thought I’d better go outside, go for a short walk. Be in the world just a little. I got some nice photos!
We were out about 45 minutes; I had 3 seizures on the walk, and 3 within twenty minutes of getting back home…lighting is such a fucking shitty trigger to have.
It’s also one that’s denied constantly by professionals…and no, it doesn’t have to be flickering/flashing, bright lights or changes in lighting for me are just as bad as flashing lights. Like yeah okay, I’m a special case & this is uncommon, but you don’t know everything about the brain and you can’t claim to know everything that triggers seizures 🙄😑
It’s been nice staying indoors and having less seizures as a result though. I’d forgotten what it felt like!