Chronically Ill - Blog Posts
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.
No. My epilepsy is NOT a disability. Why though? Because it doesn't prevent me from doing ANYTHING. It doesn't affect me all the time. Yeah, someone could say "B-but seizures are a disability!!!" Yeah, they could be. But, have you read the criteria to get disability with epilepsy? No? Okay, I'll list.
– Frequency of seizures. If they are too intense and happening too often (for example a few times per day.)
– Decrease in intelligence.
– Mental issues.
– Impaired ability to move.
– Developmental disorders.
So, that's why epilepsy doesn't make you automatically disabled, it just makes you ill. So, I prefer to use the term "sick, but able-bodied." Instead of disabled. Y'all should accept that disability is a status given by law. So, if you're getting money for your disability, and you have this status in your documents – you're disabled. Or at least if your disease is affecting you most of the time like POTS, fibromyalgia, arthritis etc. you're disabled.
But even if chronically ill means being disabled... I still prefer to be called able-bodied. I'm not disabled. So I don't deserve to be called disabled. Leave space for someone else, not me.
I'm waiting to be hated for my opinion. I don't mind anymore. I don't want to call myself disabled and bury myself in my illness. If I'd be hated for that, but I'd still be able bodied, I don't mind. You can call me like you want, and call yourself a disabled if you have epilepsy, because I'm talking about MY CASE not YOURS.
Thanks for reading. Stay healthy.
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...
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!
why does nobody represent physical illnesses?? I mean... Most people don't know what cerebral paralysis, epilepsy, etc are, and in the end laughing at it, or saying stupid and disrespectful things about it. I think we should spread awareness about physical illnesses, because they're hard to deal with alone, and also could lead to a mental illness. Please, someone, spread awareness about physical health...
Okay, okay, I try to understand everything, but... why PE it's required? I know that sports it's important, and it helps being healthy, and etc, but why I should do sports when after run I feel nausea? Why can't I just do some exercises, and that's all? For example, I also have problems with hands (tremor, but for now I'm not diagnosed yet) and my tremor gets harder and harder when I do sports, and in the end I feel bad and humiliated. So why can't I just don't go on PE?
As someone who is somewhat of a “veteran” of the online ND community, I’m disappointed in the lack of positivity and love for lesser known diverse cognitive conditions, and the opposing abundance of posts about “cures” or outdated criteria or treatments for those conditions. So, without further ado, I want to say hello to anyone with any of the disorders I’m listing, and give them the love and support that hardly anyone else in our community has… Shoutout to:
People with Down syndrome
People with Fragile X
People with William’s syndrome
People with dyslexia
People with dyspraxia
People with dyscalculia
People with dysgraphia
People with Prader-Willi syndrome
People with PANS or PANDAS
People with aphasia
People with a TBI (traumatic brain injury)
People with chronic/early onset mental illnesses
People with cerebral palsy
People with FASD or were otherwise disabled via other substances in utero
And many, many more I may have forgotten to list (but still support and love, I will add more to my list)
You are all beautiful and wonderful, and you all deserve so more love, appreciation, acceptance and support. You are just as neurodiverse as the rest of us, and your voices deserve to be heard and amplified.
I love you all ❤️