I feel like I should do an intro post so might as well do it now!
I am the host of a DID system! This intro will be focused around me as I will be the one who posts most often! I use I/me instead of Us/we 90% of the time ,although this is not because of anything specific other than preference.
Anywho, my name is Jasper! I am a MINOR!!!!!!! I am autistic and have ADHD as well as an unknown personality disorder (BPD?? AVPD??? Who knows but it's suspected I've got both). I am physically disabled and mentally delayed but please do not infantilize me as I am a teenager and can think and act for myself!
I am demiaroace and aceflux as well as a gaybian, lesboy, and turigirl! I am Novigender meaning my gender identity takes a very long time to explain and can be difficult or impossible to understand, although I will do my best! I am a woman, a man, nonbinary, agender, none, all, a mix, and each individually. I am everything and nothing and something between. I am not pangender or bigender or agender, I am each individually. But at the same time, I am all three. This makes all attraction I feel inherently queer. I use any pronouns besides they/hir/fae and I prefer a mix of a few (although that isn't necessary!!)
DNI: Endos and anything of the sort, creeps, nsft blogs, right wing fucks, bigots, homophobes, transphobes, disrespectful assholes
If you are anything that isn't on the DNI list, interact!! Any non-NSFT questions are welcome as long as they are respectful!!
I went to a cardiologist, and he didn’t take me seriously at all. I got an off vibe from him. I asked the nurses, the receptionist, and my primary care doctor for a tilt table test. My cardiologist said no to getting me a TTT, all because I got better with water and salt intake (almost as if I have POTS???)
After bawling my eyes out m called a different cardiologist and hopefully they’ll actually listen to me. I just want a diagnosis so I can move on. I feel crazy.
My plan is to purposely decrease my salt and water intake so they take me seriously when I finally get a tilt table test. I’m ready to take drastic measures to be taken seriously
If you want to call yourself "madpunk", "cripplepunk", "neuropunk", etc, your activism better not stop at the things you find "bad". People with no empathy. People with personality disorders. People who need their aids in daily life. People who have extreme fluctuating emotions. People with paraphilias. People with dissociative disorders. Psychotic people. People who have different modes of eating, excreting, having sex, etc. Homeless people. People who wear diapers. People who have violent urges/thoughts. People who you think are "dangerous". People who use drugs. People who need medication to survive and live. People with physical deformities. People who have delusions. People who struggle with feeding themselves, cleaning, working, etc.
If you think any of these factors make someone "abusive", you are ableist. Abusers are abusive. None of the above things make someone an abuser.
Madpunk and cripplepunk aren't just "adhd and autism punk". Or "mobility aid user punk". Keep that in mind.
im in so much pain today and i hate it. i had to cancel going to a halloween event with my roommate and their kid brother bc i cant walk any more today- even with my crutches.
Shouting and screaming and ripping my hair out. I am braver than my pain. I am stronger than my pain. I am more resilient. I won't fall into despair.
"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.
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.
"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.