So today has been INCREDIBLE!!!
About a week ago someone told me that polarized sunglasses help them when they feel a migraine coming on, and they wondered if they might help me with seizures. I am hugely photosensitive, to the point that changes in lighting (eg going indoors from outside), strobes, bright lights and reflections all trigger seizures.
I live a life of gloom; our curtains are always pulled shut and in the evening we have to use lamps hidden partially behind curtains, rather than turn on a big light.
I did some research into polarized lenses and epilepsy, and found that blue tinted polarized glasses have been found to be helpful in individuals with photosensitive epilepsy. So I ordered some ski goggles in – in part because they’re comfortable and easy to wear over my glasses, and also because ski goggles keep the light out much better than ski goggles.
When they arrived, they were HUGE…but they work wonders 😀
Today I went out for 3.5 hours (which is a massive deal for me). This involved two 45 minutes bus journeys (I normally have at least half a dozen seizures on a 20 minute journey) and I went into brightly lit shops for the first time in a year!!!
Before this the only shops I was able to go in were dingily lit shops, such as most charity shops. If I nipped in and was wearing a sunhat, I could cope with them. But I hadn’t been in any shop with bright lighting (eg. Waterstones, supermarkets, chain pet shops, shopping arcades etc) in a year.
Today, because the goggles were helping so much, we risked it…NO SEIZURES!!
To be in a supermarket, and able to look around and find things I wanted to buy, without worrying about seizures or feeling ill, was truly amazing. Me and my partner were just walking around with huge grins on our faces 😀
As soon as we realised that it was safe, I went into Waterstones too! I *love* Waterstones and could easily spend a good few hours in there, so getting to go in for twenty minutes was phenomenal. I even got a new dog book!
Finally we went into a shopping centre, and got some macarons. The guy commented “wow, those are some serious glasses!” I explained what they were for and that this was my first time out somewhere so bright, and the guy was lovely – he was genuinely happy for me, and gave us four free macarons 😀
On this trip I had seven seizures total (5 simple partial and two complex partial), but all but one was at the very end, when my brain had had to cope with too much and was shutting down. Other than the very end, I had just one seizure 🙂
The downside to the goggles were all the rude stares, comments, and sniggers I got. Today alone over a dozen people commented on them (generally degrading, or simple “what the fuck?” type comments) and some people walked past gawping or stood uncomfortable close and just frowned at me.
The most hilarious comments were a kid asking his dad if they were VR glasses, and was I walking around in virtual reality (!!); and a group of teenagers sniggering “nice glasses!” as they passed – my bf then replied “they’re for epilepsy”, and their faces fell as one mumbled “oh…sorry…” XD
I’m going to write EPILEPSY on the band and try fathom a way to put it on the front, in hopes of stopping the rude morons commenting, but for now I’d rather deal with anxiety around arseholes than have constant seizures and not be able to go anywhere!