#epileptic disorders

[disabledsysboxes]

Epilepsy / seizures - 2

[a-sassy-bench]

breaking news disabled people aren't using their disabilities as an excuse because it turns out it isn't an excuse it's a state of fucking existence

and existence is everywhere all the time no matter what even if you wish it wasn't

.

[arcticduckie]

Shoutout to people with Functional Neurological Disorder

Shoutout to people with functional tics

Shoutout to people who have dystonia

Shoutout to people with Psychogenic non-epileptic seizures

Shoutout to people with paralysis and or weakness

Shoutout to people with tremors

Shoutout to people who shut down/unresponsive episodes

Shoutout to people who have walking difficulties

Shoutout to people who have numbness

Shoutout to people who have speech problems

Shoutout to people with vision problems

Shoutout to people with hearing problems

Shoutout to people with memory loss

Shoutout to everyone with FND

[lockoutkey]

ya novel idea: the mc is epileptic and their powers are caused by seizures but instead of being terrified of having one and only accepting their powers when Their One True Love helps them they purposefully go to places and trigger their seizures to fuck shit up

[wheelingwithgrace]

Is it a pretty universal experience to have a seizure disorder and everyone else who knows you have one to be more afraid than you are?

I feel kind of infantilized in a way because of it.

Anytime I start to stare off, go quiet, need to rest from the activity we are doing or display any kind of behaviors like that everyone who knows or have seen me seize automatically start to panic/check in on me.

On one hand it’s incredibly nice to know that people have my back and aren’t judging me for it, etc.

It’s also overwhelming at times because they don’t let me breathe. They constantly just watch me if that makes sense.

It just makes me feel like the odd one out because all the focus then turns to me.

Yes, at least if I seize someone will notice right away and get me the help but at the same time I feel like I’m not living.

I don’t have freedom.

“Did you make it through class today?”

“Are you okay? You’re staring off?”

“I heard something fall, was it you?”

“Make sure you wear your medical ID”

“I have your mom and 911 on speed dial”

It’s why I beg and cry so much for the freedom I so desperately want. The independence.

[andr3yvishn3vsky]

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

[skeleticcs]

Seizure types

When someone says the word seizure we typically think of someone shaking on the floor unconscious, but there’s actually a lot more to seizures! They’re different for everyone but here are my most common types and how they look on me and (kind of) how to help during certain types of seizures

Absence seizure: An absence seizure is a lapse in consciousness that can last anywhere from 30 seconds to 5 minutes. I’m completely unaware of my surroundings and unable to respond, but I’ll just look like I’m staring off into space. There’s not much you can do to help besides stay with me and make sure nothing bad happens while I’m ‘gone’.

Atonic seizure: An atonic or drop seizure is a brief loss of muscle tone that looks exactly like it sounds, I just drop. Mostly it’s head drops but sometimes my whole body will give out. These usually only last a couple seconds so no need to help much, but be aware that atonic seizures can often be warning signs of a larger seizure.

Partial seizure: During a partial seizure I’m really out of it and unaware of my surroundings. I may still be able to respond to you or walk around but I’m not myself in these moments. The main thing you’d need to do to help is try to keep me in one place and away from anything dangerous. Do not let me wander off as I’m not really conscious and don’t know what I’m doing, which could end with me getting hurt.

Grand mal seizure: These are the types of seizures most people will think about when they hear the word. Grand mal or tonic-clonic seizures are the violent ones that involve convulsions, shaking, muscle stiffness, etc. follow basic seizure first aid for this type of seizure.

[finnslay]

"They aren't seizures" what if I punched you? What then?

[anonymouslydisabled]

Having an episodic medical condition means having to write detailed documents for people on what they should do in the event of an episode, walking them through every scenario, having to explain your episodes to everyone whose going to be a recurring figure in your life, wear extremely obvious medical I.D., and constantly try to raise awareness about your condition because ignorance kills.

And that's all just in HOPES that people will use basic common sense. And still your episodes are still handled incorrectly on a regular basis.

[minaespen]

apparently i'm supposed to mask how i really feel even tho i dont express it at all

how dare i answer "how are you doing" with "not the best"

[neuroticboyfriend]

guess i learned the hard way that repressing my plurality for literal years can end up causing PNES. so here's your warning not to repress dissociative disorders. or plurality in general since I'm not saying this can't happen to non-dissociative systems.

[disabledsysboxes]

Types of epilepsy / seizure disorders - 1

Requested anonymously

[ethaninthewilde]

wanted to share something good!!!

In early 2022 I moved to Sydney from Perth at 16 to get away from an abusive family and have a fresh start. Less than 2 months later I lost my job because I started having seizures, and it got to the point where I was having ambulances called almost every time I left the house. I had to stop studying, I was deemed medically unfit to work, and I became homeless as a result. I was rejected from almost every youth crisis organisation in the city because my seizures made me an "insurance liability" or they just didn't know how to or didn't want to deal with it; I lived in the one youth refuge that did accept for me 3 weeks before they told me I had to leave because I was becoming more and more wheelchair-reliant and they didn't "have capacity to accomodate that" (despite initially telling me that my disabilities were not an issue and I could stay for at least 3 months), and I became homeless again. My NDIS was rejected. I finally got a room in a sharehouse with 8 other people in October last year, but my room was up 2 flights of stairs and I was having to physically drag myself up and down everytime I needed the kitchen, the bathroom, anything. I was watched almost every time and it was humiliating and horrible and I hated it but at least I had somewhere to sleep.

Yesterday I picked up the keys to my own semi-accessible apartment. In just over 2 weeks I will be 3 years clean of self harm. My seizures appear to be decreasing and I've reenrolled in uni (half-time). Next week I have my final assessment for my DSP (australian verson of SSDI) application and then that should come through soon.

I am so proud of myself. I don't want to jinx it, but I feel like I've finally gotten through it. I can breathe now. I did this myself, and no one can take that from me. Reconciling where I am right now with younger me who genuinely didn't think I'd make it past age 14 has me in tears.

[griddleharkbrainrot]

Life would be so much easier if my body didn't hate me

[a-sassy-bench]

when i go to a venue's website and see "you don't have to pay extra for accessible seating!" i am, in fact, not reassured at all but instead am actually full of disgust that that concept would exist at all

.

[wheelingwithgrace]

I'm absolutely terrified and living with the fear that my seizures are going to kill me.

I was taken to the hospital yet again the other day due to one that caused me to completely stop breathing.

It's such a terrifying thing to live with, and I don't wish this on anybody. I think the scariest thing is going to sleep and wondering if I'm going to wake up in the morning.

I know I should be taking it one day at a time, but every single day is hard when you have limited independence because of what your body is making you go through.