Epileptic - Blog Posts

Please stop trigger tagging with #epilepsy tw/cw/warning/etc.

I need every single person to understand how horrible tumblr’s tagging system is

I go into the tag for epilepsy and its all flashing lights. We can’t use our own tag because people without epilepsy fill it up with improper warnings.

Use ‘flashing’ in place of ‘epilepsy’ in your tags. You aren’t warning people of epileptics, you’re warning us of flashing lights. Please please tag properly. Epileptics say this endlessly and constantly and it’s ignored. You are risking lives by doing this.

Here’s proof of what I mean:

THIS POST IS 100% OKAY TO REBLOG, I ENCOURAGE PEOPLE WITHOUT EPILEPSY TO ESPECIALLY DO SO!

PNES are PNES. It's a psychological, conversion, functional, dissociative seizure. Of course it's non-epileptic. But. Often missing the word of the seizure being functional can harm those who have non-epileptic, but NOT psychological seizures.

Non-epileptic ≠ Functional.

Get over it.

"Epilepsy this!" "PNES that!"

Yeah, yeah... I got it, now, when will we bring awareness about paroxysmal dyskensias? I bet, there's at least one person who's reading this post and instead of FND has some kind of dyskensia. Do not let doctors down your disorder. The thing that might be seen as psychogenic, can actually be a genetic.

Bring awareness about paroxysmal dyskensias. Do not let them put us down.

Non-epileptic seizure doesn't mean that the seizure is due to FND or PNES! There are much more conditions than epilepsy and PNES. Stop seeing only white and black, when there exists a gray side.

Sometimes it amuses me how if epileptic will have 6 seizures in one day, they will be hospitalised immediately and given treatment, while with dyskensias they just... Give the "Well, damn, but you're conscious during seizures." Yeah, I am, but why the fuck I had 6 in a row?? Sometimes, I think that tearing my ligament wouldn't be as hard as getting treatment, lol.

Calling every chronic illness a "disability", is low-key stupid, don't y'all think like that? It is almost as if y'all tried to put a label on everything you don't understand. Sometimes, illnesses can, just... Not fit in your expectations. And y'all should accept it. Repeat after me, "Not every chronic illness is a disability!".

Not all seizures are epileptic, and not all non-epileptic seizures are PNES. Hope this helps!

And still, I'm curious how an appointment which I used to go to every week a few months ago, turned into something I'm afraid of. Making me have flashbacks over and over when I just hear the word "neurologist. Made me have a whole panic attack just because I need to go to a doctor. No, please, I don't want to be treated anymore... Can't you just avoid me? Don't remember about my disease? Make me live a normal life?

No. My epilepsy is NOT a disability. Why though? Because it doesn't prevent me from doing ANYTHING. It doesn't affect me all the time. Yeah, someone could say "B-but seizures are a disability!!!" Yeah, they could be. But, have you read the criteria to get disability with epilepsy? No? Okay, I'll list.

– Frequency of seizures. If they are too intense and happening too often (for example a few times per day.)

– Decrease in intelligence.

– Mental issues.

– Impaired ability to move.

– Developmental disorders.

So, that's why epilepsy doesn't make you automatically disabled, it just makes you ill. So, I prefer to use the term "sick, but able-bodied." Instead of disabled. Y'all should accept that disability is a status given by law. So, if you're getting money for your disability, and you have this status in your documents – you're disabled. Or at least if your disease is affecting you most of the time like POTS, fibromyalgia, arthritis etc. you're disabled.

But even if chronically ill means being disabled... I still prefer to be called able-bodied. I'm not disabled. So I don't deserve to be called disabled. Leave space for someone else, not me.

I'm waiting to be hated for my opinion. I don't mind anymore. I don't want to call myself disabled and bury myself in my illness. If I'd be hated for that, but I'd still be able bodied, I don't mind. You can call me like you want, and call yourself a disabled if you have epilepsy, because I'm talking about MY CASE not YOURS.

Thanks for reading. Stay healthy.

I understand everything. But y'know what? I'm still able-bodied despite being chronically ill. Yeah, I have some diseases and yeah sometimes they affect me. BUT. I'm not like this for the whole time. I'M NOT THE PERSON WHO DESERVES TO BE CALLED DISABLED. I'm sick, but able-bodied.

The sudden urge to delete all my disability related posts, so people won't see and won't like it, so it won't remind me of being sick>>>>>

To be honest, I feel kinda remorseful for making posts with hashtags like "disabled" and others. Why? Because thinking about my diseases constantly only worsens my mental health. I literally was about to go back to cutting or mutilating my body. Plus, I don't really think that I'm like... Disabled? Like my symptoms aren't enough to be called disabled or something... So, I think that I won't be making posts like this anymore... Or do them rarely. Hope y'all will understand. Thanks for being with me in those times. Take care of yourself.

And yet again nobody cares about my hobbies or how I feel. I'm just an ICD code. Right. Just forgot.

Invisible disability is still a disability. Even if you don't see it.

WHY CAN'T I FUCKING CUT MYSELF?? WHY CAN'T I SLICE MY SKIN AGAIN LIKE I USED TO?! I'M GETTING FUCKING TIRED OF THESE DISABILITIES, SEIZURES AND OTHER SHIT. I JUST WANNA BE HEALTHY OR ALLOWED TO MUTILATE MY BODY. I WANT TO HAVE THE CONTROL I LOST.

I want to kill myself because of being disabled. I'm a fucking mess right now. I feel grief, frustration and hopelessness. I wish I could cut myself again.

Trying to dump my sufferings to feel healthy again. I can't bear it anymore.

!!READ IF YOU'RE STUDYING JAPANESE AND HAVE EPILEPSY!!

There's an app called "Memory hint", and please, don't download it if you have photosensitive epilepsy or at least consult with a professional, because there's "Kanji catch" mode that could POSSIBLY trigger a seizure, at least if you won't lower speed. I almost had a seizure because of it.

Please, be careful with apps and videos you're watching, because sometimes there's no TW!

People's honest reaction when there are MUCH more physical diseases than infections ones or breaking your limb

I'm so fucked up with these diseases thing. Everyone is taking in my disability first instead of my personality. Everyone wants only to discuss my disease instead of my new hobby. Maybe I'm really just a code in ICD... Ehh... Why can't I throw away my feelings and just accept the fact of me being a living movement disorder.

"Diagnosis isn't an excuse!!" Then what is an excuse for my uncontrollable movements, huh?

It's always "we will represent disabilities!" Until it comes to dystonia/atethosis/chorea/etc. Until they see a REAL seizure, not when a person just shakes on the ground. Until when they see how a person can't get up to go to the toilet due to fatigue. Until they see how a person suffers from pain all over their body, although they ate BUNCH of pain killers. Until disability ISN'T aesthetically lay in bed and sit on the internet. Until they see how a person can't go out on the street without someone who could help them, so they are forced to bed rotting all the time. Just please, if you speak about disabilities, talk about REAL disabilities, not "aesthetically" laying in the bed while everyone is pampering you.

How to explain to people that there's NO NEED in restraining a person when they have a seizure, like bro, just put them on their side and count time, and if the seizure doesn't end or lasts more, call the ambulance. NOT RESTRAIN a person, because either you either them will end up with a trauma.