light vision

reconciliations in disaster thinking

[aidinha]

[aidinha]

[aidinha]

My seizures didn’t come out until they sleep deprived me and pumped me full of caffeine AND took away all my meds. It was. A time. I’m rooting for you. ❤️

That's good to know!

[aidinha]

Sorry if this is too personal of a question. You don't have to answer this if you don't want to. When did you first start having seizures?

@wissykit 7 years ago, after my 31st birthday. They just came out of nowhere.

[aidinha]

So I don't get any ideas about falling asleep while I'm still undergoing sleep deprivation.

[aidinha]

Friday night shenanigans 😜

[aidinha]

It's EEG time... And my brain is eerily quiet. So I guess I have to trust time, trust my body, trust this process.

[fluffygif]

vojnik_olovni on ig

[aidinha]

Be gentle to one another.

[aidinha]

Thinking about my potential cyborg options... Anyone have experience with VNS, or know of a good resource for info? My doc keeps suggesting it but I don't know anyone who has had it?

[aidinha]

If you don't already know, I'm a professional tarot card reader and this is my side kick Guy. If any folx living with epilepsy or other chronic illness and are feeling any kind of way about this time of containment you can contact me for a free mini tarot reading. I like to tell people that this containment situation isn't that different than the days when I'm having seizures or am postictal, but it still feels kinda nuts and I still get nervous about it. So, I imagine I'm not alone in feeling this way and you don't have to feel alone either. Readings are done over email and I will usually reply within 24hrs. You can also find me in IG @la_luna_tarot where I post pretty pictures of cards and their intuited messages. Hope you are all as well as you can be! Take care, as always.

[aidinha]

If some how you discovered that having epileptic seizures gave you magical abilities, what ability would you want?

For me...the ability to read really fast, like through osmosis. I lose a lot of reading time with simple partial seizures, which make it impossible to process language. Ok, also teleportation...😋

[aidinha]

Spicing up the MRI experience with skull socks.

[aidinha]

Some rapper names in honor of epilepsy

Epileptic rapper names I would use, if that was an actual skill I had.

- Chronic ill

- Epi Lexi

- Tona Clonica

- Z Sure

...I've probably been watching Rythym + Flow too much...idk... Add your epilepsy rapper names to the list in the comments!

[aidinha]

Healing and recovery, especially from seizures, is a discipline. My bff who is also living with a chronic illness got me this pin to remind me of all the things I can do and will do, despite illness. That includes taking care of myself as best as I can.

[changelingsandothernonsense]

I have found myself wondering if anyone else feels a strong sense of guilt after having a seizure? As if you could have done something else to prevent it or that you constant fail everyone when you've had one.

I've been running on fumes for the past month and I've been sick with tonsillitis but it's as if I expect myself to just be better.

I don't know...

[fuckepilepsy]

I've felt a lot of things but guilt isn't one of them. And I say that having had plenty of seizures that may well have been avoided if I had made better decisions for my health. 

In the past I've deprived myself of sleep for one reason or another knowing full well that I was tempting fate, and paid for it with a seizure. But I never felt guilty. I felt angry, because it's not fair that my walk of life passes through a minefield.  it's not my fault that I have seizures, and it's not your fault that you have seizures. 

Being diligent and guarded all the time is exhausting and frankly impossible. Dropping your guard and letting your discipline slip is inevitable, and furthermore, it is necessary. We have to relax from time to time and live a little, or else we would lose our damn minds.

If it helps, consider how similar your guilt is to that of some abuse survivors, who are gaslighted by their abusers into believing that they brought the abuse on themselves.

Consider how much "I wouldn't have had that seizure if I had done more to prevent it" sounds like "my parents wouldn't have taken the door to my bedroom off of its hinges and hit my phone with a hammer if I'd studied more and got an A," or "my partner wouldn't scream at me and threaten to throw me out on the street if I hadn't spent too much time with my friends." 

It's not your fault and you don't deserve it. I hope you can learn to remember this. We may have to shoulder the responsibility, but we don't have to shoulder the blame.

[aidinha]

"...it's not fair that my walk of life passes through a minefield. It's not my fault that I have seizures..."

[aidinha]

This woman living with epilepsy survived 3 stages of a job interview! It's funny how epilepsy + doing something very ordinary = feeling like anything is possible. #infinitepossibilities

[aidinha]

Stranger Things 3 is bad for epilepsy

I was going to compile a list of scenes to avoid, including a time stamp and pre scene warning, so we could all enjoy this series as much as possible. However, 6 episodes in, I don’t think it’s responsible for me to encourage watching this if you have photosensitive epilepsy or are triggered by strobe light effects in any way. There are waaaayyy too many scenes with strobe and bright lights. Every episode is a huge risk and it’s just not worth your health and well being. 

*****

Anyone watch Stranger Things season 3 and notice where there were flashing lights? There is a warning at the beginning of the first episode that says “some scenes have a strobing effect that may affect photosensitive viewers”. So I didn’t proceed. I really want to watch this season (I love this show!) but my photosensitive epilepsy puts me at risk of having a seizure if I do. If anyone knows what scenes have strobe please share!