#possible chronic illness idk

[plague-parade]

if upon being told about someones illness/condition, your first thought is to say “have you tried X?” i want you to step back for a moment and think to yourself “if i thought of X after hearing about this condition for the very first time, the person who has this condition very likely has thought of this and possibly tried it already”

we are tired of constantly being told to try the same things by people who didnt know our condition existed five minutes ago.

you dont need to offer any solutions or try to fix us. i know it might seem like a polite thing to do or that it shows you care, there are other ways to show us you care.

#thought of saying something about being told ‘get well soon’ too but idk if im ready for that possible backlash lol #my mom (able bodied) gets really mad at me when i say this kind of stuff is annoying #so i just assume all able bodied people would react that way #actually disabled #disabled #disability pride month #disabled pride month #disability pride #disabled pride #physically disabled #chronically ill #chronic illness #actually chronically ill #cripple punk #cripplepunk #cpunk

[tcfactory]

An idea I will need to flesh out more for a daemon AU:

Whatever injury someone suffers will leave a mark on their daemon too. Scars, tattoos, slave brands, you know, all kinds of things will appear on the hide of the daemon. With high enough cultivation it is possible to hide these marks on someone's body, but only the highest level cultivators can make them disappear from their daemon.

Shen Qingqiu is not nearly high enough in his cultivation to heal his daemon. So he hides it instead - people know that his daemon is a wolf, but it hardly ever appears in anybody's sight, capable of wandering at seemingly endless distances of its human.

Shen Yuan transmigrates from a world that didn't have daemons and the System isn't quite cruel enough to split his soul in half like that, so he gets placed in the body of a senior cultivator who has suffered grievous trauma and a severe qi deviation after he lost his daemon in a night hunt. Shen Yuan remembers this plot point in passing, a nameless Qing Jing hallmaster who had to leave the mountain because he never recovered. He eventually died seeking shelter in Huan Hua Palace, but only after confiding in the Old Palace Master that it was Shen Qingqiu who killed his daemon out of jealousy.

Shen Yuan has all the excuse to be a little weird and people are really worried about his well-being, but all that worrying gets stifling really fast, so he takes to wandering the bamboo forest to get a bit of peace and quiet. When he meets the scarred, silent wolf in the forest "oh that must be a daemon" is not his first or even his fifth thought. The beast is matted and skittish enough that after some thinking he concludes that is must be a neglected spiritual beast. Perhaps one that was left to roam the forest alone after his master died. He can't tell what kind of wolf beast it is though - he really wants to get close enough to puzzle out what the coat pattern is supposed to be under all those scars - so he keeps trying to follow and befriend the wolf.

He thinks it's going great. He got close enough to bemoan not having anything on hand to give the wolf a good brushing once! But then he is called to the bamboo house one evening and he thinks this is it, I'm going to be sent packing today.

Shen Qingqiu doesn't send him away. He gestures instead at the very familiar giant wolf sleeping on an old mattress and the grooming equipment laid out on a nearby table. "He said you wanted to brush him. No need to be shy now, shidi."

#svsss #daemon au #tc writes #the chronic illness thing where you can only keep yourself together where others can see it #sqq keeps his personal looks immaculate and does all his peak lord duties perfectly but he doesn't have the spoons left for his daemon #nobody sees him anyway #chronic pain and exhaustion do be like that sometimes #also something something the state of the wolf reflects his mental health... #anyway sy can relate more than he wants to admit #possibly jiuyuan? idk yet but making the two of them interact fascinates me

[tryingmybestbutyknow]

Thinking about how I never mentioned my joints popping to any of my doctors cause I thought that was normal (cause it’s happened since I was a kid) but maybe I should have…

#chronic pain #chronically ill #chronic illness #should i be concerned #??? idk #i honestly don't know #joint pain #joint problems #pots syndrome #potsie #possible hyper mobility?? #i did laundry yesterday #my wrist still haven’t #recovered

[caffeinatedopossum]

I feel like I have an unacceptably low level of control over my body. Like obviously there are some things that no one can control but I have like actual big problems because of it. I'm not really sure how to describe it but it's not just me being really clumsy (although that is an effect of it) or even the tics I have.

It's like I can feel my body moving wrong constantly but I can't correct it and it hurts and it sucks and I'm tired. I'm tired of hurting myself, making mistakes, breaking things, acting like it's fine when in reality I'm constantly afraid of how much any movement I make next could hurt me. I need to move to stay sane, I want to workout and get stronger and go on walks with my friends. I wanna get better. I can't even roll over in bed without pain and I'm just so tired.

#opossums chronic illness rants #seriously though this sucks so much and idk if theres anything i can do about it but i wanna try #its probably a combination of a lot of different things #like muscle weakness and instability from ehlers danlos syndrome both making each other worse #along with the poor proprioception from autism the dizzyness and weakness from the dysautonomia #the fact that i cant really see and even possibly inner ear damage (thats a new one that ive been suspecting more and more recently) #im not sure if the ear damage would be just from built up ear wax or maybe or something else #but im really not having a good time because it brings back bad memories #when i was a kid (8 i think) my mom was convinced i had compacted ear wax but given that she refused to ever #take me to doctors she decided she had to fix it herself #which led to a lot of excruciating trials where she stuck wires and que tips stripped of their cotton into my ears #and tried to scrape out whatever she could. even though i wanted her to stop because it hurt so bad i would start crying everytime #im also mildly suspicious that might be what damaged my ears in the first place... but i really have no way to know that at the moment #all i know is i dont want anyone looking in or putting things in my ears ever again #it doesnt even matter how much i trust them because now anything put in my ears hurt #like even when im just regularly cleaning them with que tips it hurts and im reminded that might not be normal #idk if you read these tags let me know if cleaning your ears is supposed to hurt i guess? #im honestly not sure. like i just always assumed i wasnt being gentle enough or something but it doesnt matter what i do #its not super painful either just a little bit so i ignored it because i assumed it was normal #since a lot of 'normal' things hurt for me. which i now know to my surprise isnt normal at all but i didnt figure that out #until i actually got people to believe that these things were hurting me #apparently its very hard to find anyom #who believes that opening bag clips or trying to lift a jug of milk are actually quite painful for me #they usually just say im way overreacting and when i was a kid i just believed them i guess

[faeymouse]

Not me only now realizing that Query’s outfit (mainly his super cool trenchcoat) in Identity looks nearly identical to Flynn’s from Legacy.

Mixing the vibes of my favorite Program with the design of my favorite User?? Icon

#babbles #query (tron) #tron identity #also gives a possible hint about when Flynn might have sent them off? #and ill be honest while im genuinely pleased with this game i have no idea how they equate tron to ‘the one who seeks only truth’ #like what in the vast amounts of time distorts historical figures? #maybe its something from betrayal? idk. tron just doesnt strike me as someone who doesnt get involved #like literally ever. the dude is chronically unable to not get involved #but maybe its just the memory of him that the ISOs culturally have? #like they dont really remember the flawed program just what their ancestors remember of him #which boiled down to ‘he badass. he didnt hate us. he was always getting up in everyone’s business’ #still feel robbed that Query didnt have a tron emblem on his suit a la Beck #when i draw him again i might take liberties and put one #while i love his design especially that coat when we got a front view i was like ehhh #he needs to be more glowy frankly #now Grish! There’s a design i can sink my teeth into #buff. his giant chest is lit up like the 4th of july. the scar. the beard! #literally the best looking character in the whole game

[skitskatdacat63]

Oh my god so I was telling this girl I always sit next to in class about wanting to use F1 post-race interviews for this assigment coming up, but referring to it as "this sport I watch", and she asked which sport, so I'm like "F1, car racing" and she's like aahhh okay okay... so I'm like, "Would you like to see a pic of an f1 driver, cause I want you to know I'm not talking about nascar LOL" So I showed her this pic of Charles:

And she's like, "....so what is this sport called again? And who is this man's name....?" Got another one, boys 😤

#i swear to you Charles is the best gateway drug for people who know nothing about racing #but i showed her his insta and was telling her abt ferrari's thirst traps LMAO #shes like 'so F1...ill check it out...idk if my boyfriend will be happy abt this...' #that pitstop podcast drama irritates me sm cause its like #i dont get why getting into f1 originally bcs of tbe handsome drivers is a bad thing #like everyone needs some kind of gateway into it but this is always looked down upon :/ #and my prof said i can use interviews as my example yayayayaya ty for allowing me to be even more chronically addicted #also its so funny that like every time ive ever mentioned being into car racing everyone(here in the US) has thought i meant nascar #whenever someone thinks im talking abt nascar i gotta whip out my f1 pic folder so i can set the record straight sjfkgkgl #okay anyways i am happy abt possible conversion even if she only just ends up simping for charles #catie.rambling.txt

[i-know-how-my-story-ends]

It's been very funny to get diagnosed with CFS/ME in the year of our lord 2023. Doctors keep being disappointed I haven't had COVID.

#Not to downplay the severity of long COVID #long covid is also possibly a form of cfs according to doc! #jay talks #chronic illness tag #uhh idk #personal

[cerealandchoccymilk]

clenching fists shaking breathing heavily while enduring a very painful discomfort . but i cant be worried about that bc i have a speech draft due :3

#it manages to get bad atth e worst timinng #pretenidg im ok hwen mom comes into my room #bc i cant possibly tell ehr that i nnly have 1 sentence and a fucking. word bank???? on the page #likethsi itchy pain is pretty fucingnnnnnn owwww worrying #even for me whhos used to chronic itchyness. its a new kind and new location #but ill get it checked tomorrow or msth idk. not now #but hte thing i sthat i cant concentrate at fuckng all on the speech bc of this

[trans-axolotl]

oh i have to be awake tomorrow...and also able to walk tomorrow so lets hope my body is cooperating by then. which i think it will be tbh usually i only stay like this for like a day + sleeping sometimes helps. cause i have to practice for nationals tomorrow and tbh i really should have taken it a tiny bit easier this week bc i knew that i would need energy for dance next week but i did not and now my body does not want to move.

#personal #general fun chronic illness moment is when i legitmately can't get out of bed #post exertional malaise or whatever. is what my one doctor called it #is that the term? i think im forgetting. whatever. close enough #yeah pem. combined with possible mania crash. idk. we will see #i want to get better in touch with my limits bc like #i dont love crashing. esp when i know sort of what my recovered baseline mobility status is #anyway. taping or bracing tomorrow and taking it easy

[robinsnest2111]

ough..... brain demonssssssssss.......

#om the verge of succumbing to the sweet murmurs of brainwashing myself into believing i simply need to toughen up more #and ignore all the signs of mental illness and possible neurodivergency and chronic illness. #so i'll finally turn into the mentally and physically healthy and hardy adult everyone wants me to be #idk. headache fueled 2am thoughts. evil evil evil evil evil #pls just let me pass out from the pain. i wanna exit whatever fresh limbo i am stuck in right now

[spoonsforminutes]

Heyo, I wanted to do a summary post of this blog and what my goals are because I take my last final this Wednesday, and then I'm finally done with school until I decide how I'm going to approach med school. I started this blog when I was 16, and through life being busy, I never really structured this blog well. I'm going to try and change that especially because this is my one space where I do feel connected to the disabled community.

I need to update the post about the IOP therapist who mistreated me because I have decided to seek legal action with the help of my queer therapist. Especially because the ADA protects against discrimination based on sex (including gender identity), religion, race, etc. for disabled individuals, I want to write a post that can help guide this process, and then I also want to see if I can somehow create comprehensive guides for different aspects of disability. I definitely want people to add to this conversation, especially since everyone's needs are different, and I've been wanting to discuss ableism and its effect on disability both within structured systems like healthcare and in social interactions. Even though I quite literally have a lifetime's experience with my disability and a formal education on the neuroscientific mechanisms that cause chronic headache pain, able-bodied people still talk to me like they somehow know more than me? Because migraine is so common and known despite so few actually understanding how migraine headaches can be incredibly debilitating, I want to continue putting my thoughts on it, so that hopefully someone won't have to repeat the same trauma. I've written my personal story down for so many essays and personal statements, but I don't mind writing it again. I want to focus on the ableism and trauma I faced as a kid and how it's affecting me as an adult, especially as an adult that didn't have any support as a kid.

I still won't be around too often, but I at least hope for a little more consistency. I definitely have a problem with overworking myself and not being able to relax, but because I'm essentially on my own, I need to figure myself out. My family was very unintentionally cruel to me, so a lot of my energy was focused on survival. Moving is a new start for me to figure out more of my gender and more of myself. I keep myself very closed off because my family would constantly berate and degrade me for the things I liked (why? because sexism), so it's hard to really be myself when I wasn't allowed to be and when I have such a confusing relationship with my body and sensations.

#disabled #disability #spoonie #chronic illness #chronic pain #mental health #mental illness #wedding speaks #i know ive literally just mentioned this not that long ago #but ive had a lot going on and i like to put my full effort into things #also yeahhh having your therapist call you pathetic for wasting your life kind of fucked with me #like wow i really wish i could be more of a person but trauma #if people want me to do something then pay me #idk guys i try to stay positive but my life really sucks #im just trying to focus on making it suck as little as possible #but that requires people deciding that i currently deserve to live so #also i might change the appearance of this blog but we will see

[erratic-brainrot]

I just been reading about Heart Diseases and chronic blood disorders for the last couple of hours. For South Park. To make South Park fan content.

And now I have headcanon Tweek with Dilated ccardiomyopathy (DCM) mainly due to pre-existing drug abuse and stress. (Also quirky note that Stan or randy could have this due to alcohol abuse)

{possibly paired with an overactive thyroid for a time due to medical treatment for arrhythmia, common with heart disease, but I need to read up more}

Possible with Graves’ disease (esp if I want to ignore meth based root, which I rarely do. But this disorder is very befitting of tweek)

With stress being a trigger. Externally very Tweek. But you could simply go for an overactive thyroid finding other root causes (as I did with his DCM Sortve)

There was more like a bone based illness? Possibly MS but I can’t find it in my tabs? But either way that’s what I found if you want to utilize my labour.

I probably will make actual essays in the future if I’m smart enough about chronic ailments for character writing. Since it’s good to research, and I find it really refreshing to write about?

More people have conditions than we talk about, with myself and many people I love with certain ailments that affect their life. And I am for all means encouraging of possible education or involvement through means of media. Even through South Park fan work lol.

#south park #cartoon #tweek tweak #stan marsh #me talking #illnesses #illness #chronic disease #chronic illness #writing #writing reference #I’m trying my best #writing ref #i hope this doesn’t come off as offensive? #i Sortve just feel like the writing of illness as long as you try your best to study can bring out a lot of positivity #like fam I literally found out my blood disorder is Anemia from research #and learn more about a possible risk my brother had for a stomach diease #etc #like idk #it’s homey to have people who aren’t like 100% healthy #or just having other issues that impair them #like mental illness #but with stuff I don’t really see? #it’s just so fucking heartwarming to me I can’t explain it #the idea of being seen and having your struggles heard and life normalized #it’s kinda nice #so yeah I might make the boys have more issues lol #it’s nice mentally for me #anyways I’ll stop being gay byyeee

[totalshockwaves]

neurologist: looks like you have some pretty pronounced carpal tunnel syndrome

me: thank you

me, internally: im so good at having carpal tunnel

#if i have to have the surgery i'm so getting my wrist(s)/hand(s) tattooed after i heal up. i deserve it #im thinking mastas lyrics 'I got my rickety hands' on the side of my wrist/hand for one #would love it in franks handwriting just bc fucked up little hands solidarity but idk if that would be possible #i also have other fucky things with my wrists/hands rip #*fucked up little hands/chronic pain/chronic illness solidarity ✊️ i mean lol #like the song isn't a super meaningful one but a) having an mcr line tattooed on me has been a life's dream just never could decide #and b) it's also kinda fucking funny to get that specific line on ur hands after hand surgery lol and I'm all for that kind of humor lol

[thattheatretrash]

hi so once again i am turning to tumblr bc idk what else to do

need some chronic pain related advice so if you can relate or know someone who does please read below

little background about me: i've had chronic pain for almost two years now, and still no solid diagnosis. different things have been thrown out there, but a lot of the tests i've had done have come back negative, not significant, or inconclusive. the only thing that was ever yes yes definitely positive was a mri of my thighs that showed inflammation. however, a couple months later when i had a muscle biopsy of my thighs done, they ruled it not significant, and it didn't point to a further diagnosis. my rheumatologist decided to put me on prednisone anyway, and it HELPED SO MUCH. at least temporarily, i'm tapering it now since it's not good to be on long term. but it helped with my energy levels and my pain/numbness/weakness/tingling/burning/tingling pain in my lower body. i definitely couldn't have finished college without it.

recently, i was put on lots of different meds, and i've been have a bad flareup and new weird symptoms since the beginning of the summer. i also started using weed to help manage pain and fatigue and it helped a lot. however, because i've had so many new (and some very severe) symptoms and couldn't tell anymore what was a side effect and was a symptom, i decided to stop/taper every medication/drug that i could about a week ago (with my PCP's help). i'm still adjusting.

however, the thing i'm probably most concerned about rn is my new neurological symptoms that have been progressing. while i've had things like sensory issues or brain fog in the past, it's taken such an intense turn to the point that i'm pretty sure i've started having seizures? i hesitate to say that in case i'm wrong but i've been having them a lot. since stopping my meds, it seems to be helping slightly. my brain doesn't feel as overloaded. but i'm still kind of having them. i did go to the ER for one after i had an episode in the urgent care waiting room, and they did a CT which looked fine. they diagnosed it as a "headache" and told me to call my rheumatologist to get off my mycophelate mofetil since they thought it was contributing (and i think it definitely was, especially to my digestive system issues, brain fog, and weird random i'm so sad but idk why mood swing things).

i guess my question is, for people who have had seizures start developing later in life, how did you know it was a seizure? i mean i've looked up stuff online so i'm pretty sure but of course i can't really be sure. and how do you manage seizures day-to-day?

also, for people with chronic pain in general, how do you get people to believe you? i just feel like everyone is starting to think my pain is psychosomatic, which i think of course, some of it is. everyone experiences psychosomatic pain sometimes, and i do have a history of mental illness. but i actually feel pretty good right now!! and i'm doing everything i can to limit my stress, pay attention to my body, give myself positive affirmations, rest, do some gentle movement throughout the day, sleeping a lot (8+ hours usually) on a regular schedule, trying to eat a decent diet, meditate, stretch, i mean, i am really trying everything i can.

but i just don't know what do sometimes. so any advice, especially from other people with chronic pain, is super appreciated. and thank you for reading all of this if you did. i hope you are having a wonderful day!! here's to the lovely journey of becoming closer and more loving with our bodies.

#chronic pain #chronic illness #chronic health tag #chronically ill #chronic disease #chronic pain advice #disability #drugs mention // #medications mention // #healthcare #fibromyalgia #?? #it's a possibility #idk anymoreeee #myopathy #that's my rheuma thinks anyway #it's my 'working diagnosis' #charlie's letters to a friend #personal #seizures

[hexjulia]

every time I see those ‘lol pain in my joints and everywhere. life at 25+ am i right’ posts i am restraining myself from writing an incredibly annoying reply about how people should stop normalising being in pain. like no that is not normal. you should see a doctor. 25 is not old age, 30 is not old age, even at solidly middle-aged 40 you really shouldn’t be suffering from generic ‘me old bones’ pain yet, 50 ok yeah sure now it should start if you never did anything to stop this problem from forming, 60 yeah probably sorry you’re just really old now and suffering general old people pains is the norm. You should still see a doctor though because, in fact... this can often still be treated.

#sorry everyone i saw one of Those posts again #YES chronic illness is real and people suffer from it #which makes it all the more important not to make people think this is Normal and just a part of aging past idk childhood??? like bro what #it already takes a longggg time to get a correct diagnosis ESPECIALLY for chronic illness #you really wanna contribute to people thinking their pain is 'normal' and possibly waiting years before getting the right medication?? #possibly worsenig the damage their illness is doing?????

[commander-damneron]

So it turns out both my mother and a decent amount of my social group knew I had some level of hypermobility (apparently my elbows give it away), and they all assumed I knew (again, because of the elbows), and as a result, I've had a lot of conversations where i have to explain that I thought that's just what elbows were like

#hypermobility #so it turns out the conversations re: hypermobility stuff while i was there were intended to actively include me #and not just in a 'chronic illness' or 'degree in how bodies work' capacity #in my defense the very first dr i saw was my friends eds specialist and he said nothing so like. i figured he'd pick up on it #turns out no he's just not good at his job if you don't have an existing diagnosis #petition for someone to think up a shitty saw trap for him and the ortho who said my right hip should be fine #bc it has less coverage than my left #(turns out that yes less coverage does mean nothing you have to remove but it also means easier to pop leg out of socket) #also while I'm just rambling about hypermobile stuff in these tags idk if i really want to look more into the possibility of it being eds #i went through the full diagnostic list and i technically fulfill enough for it #but the last bit that's the diagnostic tipping point is 'direct relative also meets diagnostic criteria' #which i could argue i do: my mum ticks off every box i do #but that includes 'direct relative meets diagnostic criteria'. which in her case would be me her only direct biological relative #and i don't want to see how the nhs handles a potential infinite recursive