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It's actually so comforting to have classmates with mental illnesses or issues. Like, yeah, I'm not alone in this shit!
The guilt after getting ill is consuming me away. I wish, I was able to change or heal.
I may not understand psychosomatic disorders, but damn, people definitely should stop stigmatizing them. Like, why the fuck it's called pseudo just because it has mental origin? You wouldn't call someone depression pseudo, so why the fuck you're calling functional symptoms pseudo?
Guys with FND/Conversion disorder/Idk, whatever you call it, you're completely valid. I genuinely don't care about your disease being psychogenic, you're still a legend with completely real symptoms, just not psychical origin.
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.
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:
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.
When your illness is so rare, that you've 62% chance of being misdiagnosed and everyone who you find on YouTube is a random old guy and just a 18(?) years old guy:
People are talking about how they understand you, how you are still you, even if you got sick. But when I get a combination of movement disorders, y'all are DAMNED.
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.
When the pain hits THAT hard that you need to work while laying down
The doctors had been neglecting me for more than a year, and the day after yesterday I casually had tremors, though I needed to stand up. It wasn't too hard, though I walked like a soldier, cuz my legs were too stiff. And yesterday and today, I noticed a glue-like feeling in my joints, as if some liquid was there, plus it's SO FUCKING PAINFUL to bend it... It starts to hurt, burn and the glue feeling gets worse.... I don't know what to do... Looks like I ended up damaged due to the malpractice of doctors!
I hate how expensive genetic tests are. Like what do you mean I should pay 1000-2000$ and wait for half a year to get a proper diagnosis? And if only my disease was simple to see on MRI or EEG... This thing is only seen on a few scans and mostly you need to take a genetic test. BUT THEY'RE SO FUCKING EXPENSIVE... Please, someone, buy me this test, and I'll kiss your legs
Am I disabled if I have to be homeschooled because of my chronic illness? Asking out of curiosity.
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.
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.