Movement Disorder - Blog Posts
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.
When you suddenly realize that you need to do your lessons, but your whole body is hurting and also twitchy and a small activity could turn you into a shaking mess:
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!
Years will pass and I will never understand, why, just why, there's only 2 sides when it comes to my illness? Some of you immediately start to pity and pamper me, treat me as if I barely understand something, while the other consists of people who are almost the same as the 1st type, but these are trying to do it differently, trying to look caring and understandable, but in the end they are almost the same. And also, since when the phrase "I'm not letting my illness stop me." Became something ablestic? No, I don't want to treat myself as a snowflake. I don't want to do something less, because YOU think that I'll have a flare up. Flare ups are only MY and MINE DEAL, NOT YOURS. I don't want to sit and whine about how fragile my body is. This only makes me look WEAK. Since when I need to work less, just because I'm ill? Maybe I WANT to work?? Maybe I CAN work?? Maybe, it is YOU the one who sees only code in my med card?!
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?
To be honest, after years of searching, trying to find my diagnosis, I just... Stopped caring about this. I even started to like this thing, I know, it harms me, but do I want to treat it? No. It's a part of me, that I like.
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.
"But my ribs are hurting too, so help me!!" No, you're saying that just to force me to do something you don't, while I just want to curl up in my bed with this stinging pain in my ribs.
"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.
Having a serious disease is just like:
"Oh, that's just an illness and I don't need to feel guilty because of it, because I can't control it"
And then:
"FUCK, HOW MUCH I HATE MYSELF, I CAN'T DO BASIC THINGS, I'M ALWAYS ISOLATED, MY DISEASE JUST BECAME A MEME, WHY DO I HAVE IT??? JUST WHY?? IS THAT I DESERVE??? WHY I SHOULD I LOVE MYSELF WHILE EVERY FUCKING SECOND I'M WASTING AWAY??!"
People who have any physical issues, I've created a discord server for you all! Hope that you'll have fun!
https://discord.com/invite/MgU9nvnK
People with physical health issues, what do you think about making a group of us, to support each other? We could also make some representation to spread awareness about our illnesses! Just tell me where you'll be comfortable to chat! And also, there's no matter which diagnosis you have, because we'll represent every physical health issues!