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Hiding indoors helps

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!

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The day the sea froze!

We went searching for sea pottery a few days ago.

This is one of our very enjoyable but unusual hobbies 😂 Hey, it’s free, gets us out of the house, is interesting, and easy to pause for when seizures hit!

It was -3c when we went, and the beach was covered in frozen salt water! The quicksand was also frozen, which meant we could travel much further out, and as a result we found some truly beautiful pieces…this was easily our most successful trip!

If you don’t want to see boring photos of old pottery, stop here 😉

These two pieces, although very dull to look at, we’re cool because we could face date them! They were dated around 1880-1936, as we were able to identify the back stamps.

And here are some of my favourites!

The huge brown circle is a ‘kick up’, the base of a very old bottle. This one is actually green (you can see when light shines at it) and must have been part of a giant bottle!

The entire collection from that day’s outing

And look at all this ice!! I’ve never seen this in all the years I’ve lived here!

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A tough day

Stress and seizure rage today 😩

Phoned PIP today to tell them about my seizures (we were waiting until a medical professional had acknowledged they were seizures, but that’s obviously going to take too long)…figured if they won’t acknowledge them as seizures because I’m not diagnosed, they’ll at least see how damaging they are to my quality of life. I was already only one point off the enhanced rate of PIP, so I guess with seizures they’ll have to qualify me.

My partner also called a company about a disabled bus pass. It seems I’ll qualify new, but the easiest way is to wait for PIP’s reassessment, and then use that as evidence. Bloody hell.

Anyway. I got some nice photos (of me and a burnt down house) once everything had stopped being so screwed by seizures.

Sad confused seizey me trying to take a video

Collected re-grouped me, that’s better!

I went off in a rage for an hour. Don’t remember much, cut my finger somehow, then phoned my partner and we talked, eventually meeting up. I hate how abusive I am around seizures with seizure rage, I fucking hate myself for it 😫

Took some nice photography when we were back together though.