Cripple Shit - Blog Posts
Chronic pain havers, we need to unionize against our bodies or something, this is very out of hand. Pain? Whenever our body feels like it? Fatigue? The "nerve itching" thing? The "no position is comfortable" times? I'm telling y'all, this is some wild'ass shit we're being forced to experience.
"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.
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.
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.
!!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.
"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.
Just accept the fact that flash warning doesn't count as a warning when it appears on a 0,1 second with a small font in the bottom of the screen. I hate it when people can't take a minute to make a good tw.
Why can't I just give up and stop visiting doctors and let myself rot until it's too late? I feel like I'm already starting to decompose, just leave me alone, so I can rot
Some people are just: "we're tolerant! we would never bully or laugh at anyone!"
And then they see a disabled person, and start to laugh at them, or say "you're just pretending!" shit
When people are saying that I'm sick, I don't really want to admit it. I don't feel like I'm suffering enough, like, c'mon... Isn't the word sick means just something more hard to bear? I'm literally doing nothing, but laying in bed and complaining about how hard my illness is, while I still can walk and do some things... Jeez, how tired I'm of these physical conditions...