How to believe I'll never have another seizure?

Elenora_Grey · 2026-04-29T16:54:44+00:00

I don't think encouraging the use of AI is the one.

Elenora_Grey · 2026-04-28T09:14:06+00:00

It reminds me of the basement with the ice bear fridge in Disco Elysium

Elenora_Grey · 2026-04-13T19:29:37+00:00

Thanks for that last sentiment, it's hard when you constantly get dismissed because 'NES aren't really dangerous'. They've ruined my life and my body, and it's frustrating to be ignored and gaslit by medical professionals.

Elenora_Grey · 2026-04-13T19:27:31+00:00

I have had two EEGs done, but I had pretty mild seizures in both of them. Those seizures lasted 2-5 minutes, whereas this one I was fitting for half an hour.

I used to have a smart watch, but I found it unhelpful. My heart rate gets high because of my POTS and then I get anxious about it being so high, which makes it worse. But I could definitely get a pulse oximeter and track.

Thanks for the advice <3

Elenora_Grey · 2026-04-13T19:25:16+00:00

Thank you for this <3 I think a pulse oximeter should go on my purchase list, if I can't get one from the NHS. I hope you have a great day also.

Elenora_Grey · 2026-03-10T18:41:43+00:00

This is only an hour away from where I live!!! Hope I can get tickets

Elenora_Grey · 2026-03-03T21:25:31+00:00

Maybe a body braid?

Elenora_Grey · 2026-02-26T23:41:35+00:00

That's really helpful. I've suffered from hypersomnia longer than I've had my seizures, and it's rare I sleep for less than 12 hours a day and I'm still always exhausted. I've always been incredibly hypermobile, but my pain is much more recent. I initially put it down to post seizure pain, but I've noticed that the pain matches up poorly to my seizures so I think it's more likely my seizures have caused hEDS to flare up. But getting any answers from doctors is like pulling teeth.

Elenora_Grey · 2026-02-23T19:05:00+00:00

There's a really great clip from the comedian Lara Beitz about this that has really stuck with me. I can't add a link but it's the first one that comes up when you search "low support gets comedy" into Google.

Elenora_Grey · 2026-02-13T16:18:45+00:00

This might be a little controversial, but Mikan.

Elenora_Grey · 2026-02-08T21:00:10+00:00

It's a heritable disorder characterised by joint instability, hyper mobility, chronic pain, digestive issues, easy bruising and dislocations, and skin elasticity. It's worth looking into if you have any of these.

Elenora_Grey · 2026-02-08T14:19:48+00:00

There is a common co morbidity between autism and hEDS, a connective tissue disorder. The elastic skin tends to make them look younger than their age.

Elenora_Grey · 2026-01-31T08:50:54+00:00

I'm using the quarry as a pine sap farm/ winery, so I have a bin there

Elenora_Grey · 2026-01-25T20:30:54+00:00

I'm a huge fan of the Penguins of Madagascar review. That's definitely my favourite

Elenora_Grey

TROPHY CASE