#chronic disorder

[tumble-tv]

"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

#wheelchair #ambulatory wheelchair user #ambulatory mobility aid user #chronic illness #chronicpain #chronic disability #other chronic illness bs #chronic disease #chronically ill #disabled #fibromyalgia #undiagnosed chronic illness #disablity #chronic disorder #chronic pain #chronic fatigue #invisible illness #invisible disability #disability #physically disabled #disabilties #cpunk #cripple life #cripple problems #cripple punk #queer cripple #crip punk #undiagnosed chronic pain #joint pain #screenreader unfriendly

[v-tired-queer]

Y'all ever go awhile without having a seizure which make you pretty proud of yourself and then suddenly you get this feeling and you're like . . . oh no

#i am feeling oh no in this chillies tonight #i'm not actually in chillies #and it's not night #but i am eating chillie and it's mid afternoon so #pnes #psychogenic non epileptic seizures #non epileptic seizures #seizures #seizure disorder #chronic disorder #disability #chronic disability

[chronicillnesshumor]

We need a slur for people who don't believe when somebody is chronically ill

#autoimmune #chronic illness #chronic disease #chronic disorder

[autisticdreamdrop]

disabled things 26

staying in bed all day cause you're in pain

#disabled things #disability things #disabled #disability #spoonie #bed rest #rest #low spoons #spoons #chronic disorder #chronic disease #chronic fatigue #chronic illness #chronic pain #invisible disability #disabled community #disabilties

[aspecgirlies]

one thing i will never get over is when i went to my back doctor and i asked him about my constant severe back and shoulder pain and he was just like "oh! well that's weird. can't do anything about it. sorry ! :) we'll never see you again btw !" and then just fucking diagnosed me with chronic back pain and chronic shoulder pain and called it a day

#chronic disorder #chronic illness #chronic pain #maddie speaks #i had scoliosis for a while but it wasn't too severe #and during my last appointment he just said that my shoulder pain had nothing to do with my back and nothing looked wrong #and there was nothing they could do about my constant severe back and shoulder pain. which just pissed me off. #all he told me is that my future children could suffer from the same shit i do and to just keep that in mind #and also just to take doing daily tasks easy- especially if it included moving my body a lot and reaching for things and holding things #and to just like. let other people help me with heavy lifting. i mean i throw out my back whenever i bend over or pick up something even #SLIGHTLY heavy. so.

[slimegirlkiss]

best part of having hot people disease (chronic digestive issues) is i get to eat sweet little treats (fiber gummies and antacid tablets) everyday

#my tummy is in so much pain all the time #ibs #acid reflux #gerd #health #meds mention #🫧 #digestive diseases #digestive disorders #digestive issues #chronic disease #chronic condition #chronic disorder #chronic illness #gastrointestinal issues #gastrointestinal disorders #gastrointestinal health #gastroesophageal reflux disease #the horrors of body

[npdbenrey]

my skeletal structure is so fucked up dawg i'm like 2 steps away from needing a wheelchair 😭😭😭

#i mean technically i already do but #2 steps away from it being a medical necessity because i won't be able to walk #actually disabled #disabled #chronic disorder #chronic illness

[biochemsitry]

Narcolepsy is objectively the funniest disorder. You're just. Sleepy all the time. The medical name for this is "excessive daytime sleepiness" (which btw really confused me when I read that "all people with narcolepsy have EDS" and thought it meant Ehlers Danlos Syndrome). And the doctor has to give you crack so you don't spontaneously fall asleep while, idk, mopping the floor or whatever (this legit happened to me once). And having ADHD on top of it is even funnier bc like, I feel like I could either take a 20 hr nap or run a marathon. And I get the same med for both and it somehow works???? (It's not actually crack, it's Adderall, but my friend likes to say I take crack.) And the reason for all of this is bc my stupid brain can't make the one chemical that keeps people awake. My brain actually just sucks at making chemicals in general (I have ADHD and am mentally ill so things like serotonin and dopamine are also in short supply), but why this one in particular???

#narcolepsy #narcoleptic #adhd #narcoleptic with adhd #adderall #sleepy #funny #excessive daytime sleepiness #eds #drugs #mentally ill #neurological problems #neurodivergent #neurological disorder #disability #chronic disorder

[wickedlace]

April 20, 2023. 3:33 Am

I've been meaning to write about where I am in my life. I haven't in a long time, and I know it's better when I do keep up with it. I don't know why, but I know it's true.

On paper, my life is as perfect as its ever been. I have a loving husband, a new and really cool family. We just adopted our sweet rescue dog Sam, Sadie and Gus are acclimating to him fairly well, too. We're talking about having a baby by some time next year. I have a remote job. I live in my own house. I own this house. I have dnd every other week at my house, where my husband is the dungeon master. These are all so amazing and I'd always hoped I'd get to this place in my life. I'm so grateful.

However, my health absolutely sucks. I've been getting like 5 migraines a month, meaning I have to call out way too much. I don't have any energy, I can barely stay awake the whole day without needing to nap. I get flair ups. I can't post content because I just don't have the capacity. I'm getting a migraine right now, and it feels so shitty. I only started getting them in 2020. I have a doctors appointment on Monday, where I plan on bringing this up. But honestly I'm pretty disenchanted with the American health care system. Frankly, I'm at a point where I feel I should qualify for disability, but somehow I don't. Fatigue. Nausea. Migraines. Stress. That's all it's been for months now, worse as it's ever been. People come over to visit my husband and I, but I can't stay awake.

I get flair ups, where I get a very lupis-looking butterfly rash on my face. I've told my doctor to check it out, and she says she has, but that it's not what I have. I do, however, have a high count of monocytes and still a very low count of neutrophils. This tends to be indicative of an auto-immune disorder. But will they ever find a name for what I have and give me any validity to what I experience? Honestly, I doubt it. According to my oncologist, one minute I'm about to die, and the next, I'm meant to believe I'm totally fine.

I want to be able to embrace where I am now, fully, but all I feel is that my body is holding me back from it. The doctors I see aren't helping at all. The only time I feel ok is when I'm on a THC gummy, but obviously, I can't fully function at that point, either. I've fallen into the habit of getting myself "little treats" on Amazon, which I'm trying to get better about not doing. I will "little treat" myself way too much if I'm not careful.

Idk y'all. It's hard. I feel so guilty for feeling so bad all the time, but idk how to control it. I just want to thrive. I want to experience what that's like.

#me #personal #neutropenia #chronic disorder

[learningfromlosing]

My body is starting to develop chronic pain because my agoraphobia makes it hard to go outside and walk around. Now my back never feels comfortable anymore. My bones don't feel like they're in the right place. My shoulders are so hard to keep up because my breasts are so large and heavy it's hard to force it. I try not to crack my knuckles anymore bc Im starting to feel them hurting. My shoulders have been getting really bad. So bad I found a new way to crack my shoulders that I didn't know before. And it feels. Very. Weird. And now I'm like oh perfect now I'll have another ache because I'm cracking a new part of my body. I'm not even 24 I hate that I can't feel comfortable with my own bones! Never have I ever felt like this. I was so athletic as a kid. Now I can't even walk around too much without getting winded or go to sleep without my back feeling like it's moving on its own. Terrible and awful.

Terrified of going to a new primary doctor bc they're absolutely gonna wanna take blood. Haven't gone to do that since I was way younger maybe 20. I was on my own and I was and am terrified of needles and doctors and I almost fainted when they were taking blood. I couldn't even give them all of it I had to stop and I was so faint the lady was so frustrated she said to just come back "when I grow up." 🙃 Miss Ive been taking over 4 medications a day since I was 15 my liver may be worse than a 60 yo alcoholic. You can't wait 20 minutes while I get my color back? Haven't been to the doctor since. Dentist is the same story and my wisdom teeth are basically all the way grown in. They hurt so bad.

Hate doctors. Dentists. Going outside. It's hard being awake. I can't sleep at night. I can't eat well or constantly.

I'm only 24. I'm too young for this shit. What do I even do.

#agoraphobic #agoraphobia #mental health awareness #mental health #mental heath support #mentally unwell #mentally tired #physical pain #chronic pain #chronic disability #chronic disorder #disabled #disability

[myalgicencephalomyelitiscfstom]

#chronic diseases #chronic disability #chronic disorder #long term illness #chroniccommunity

[tumble-tv]

The body isn't body-ing

#chronic illness #chronicpain #chronic disability #other chronic illness bs #chronic disease #chronically ill #disabled #disablity #fibromyalgia #undiagnosed chronic illness #chronic disorder #chronic pain #physical disability #invisible disability #disability #physically disabled #invisible illness #cpunk #crip punk #cripple life #cripple problems #cripple punk

[v-tired-queer]

Disabled Affermations That I Really Need To Hear Today:

I'm allowed to say no to anything that I feel I need to say no to, for whatever reason

My health and wellbeing comes first and that's okay

Being disabled does not make me lesser than everyone else

If someone gets upset with my boundaries due to my disability, that reflects them, not me

I'm allowed to put myself first

I'm allowed to have bad days

If all I do is my best, then I've done enough

It's okay to not be able to do my best

I do not have to push through my limits for the sake of other people

I do not have to apologize for my bad days

My medical conditions are no ones business but my own

I deserve happiness

I deserve respect

I deserve love

#disabled #disabilty #affermations #disabled affermations #words of encouragement #mental health #physical health #mentally disabled #physically disabled #mentally ill #spoonie #chronic illness #chronic disability #chronic disorder

[after-nine-at-the-oasis]

Hi guys!!!

I wanted to let y'all know that it's Ehlers-Danlos Syndrome Awareness Month!!

Ehlers-Danlos Syndrome (or EDS) is the general name for a group of complex connective tissue disorders. For example, the type of EDS that I have is Hypermobile Ehlers-Danlos Syndrome (hEDS). It's the most common type, but due to the complicated nature of narrowing down genetics and a lack of funding for EDS research, there is not a known gene that causes it.

EDS has no cure, and symptoms can vary greatly between person to person. It can be completely debilitating. For me personally it means joint pain and instability, subluxations (partial dislocations), maybe even dislocations (I'm not entirely sure), muscle pain, soft skin, easily bruised skin, exhaustion, circulation issues similar to Postural Orthostatic Tachycardia Syndrome (POTS), gastrointestinal problems, and more.

Honestly, my life right now is a great example - due to weather, hormones, my bad decision to wear heels yesterday, and probably just bad luck, I'm currently going through a flare up. Coincidental that it's in the beginning of May! This all means that I have greater, sharper pain, I'm more tired, and finding it more difficult to walk than usual.

EDS greatly impacts my life. Perhaps not constantly, but just one thing I could mention is the fact that EDS has taken my ability to run. I can't run for very long, and it is not near as easy for me as it is the average healthy person. Often I regret it afterwards due to the pain and exhaustion it causes.

Having EDS also caused me to develop what is most likely Amplified Musculoskeletal Pain Syndrome - my nerves don't treat pain like they should, and they often overreact.

Sometimes, it's honestly really hard to stay positive. But, I don't have it as bad as some, and I still have a lot of good things in my life. I'd really like to preserve those. My life is not hopeless just because there is no cure or even true treatment right now.

EDS research is underfunded, and many people don't even know this disorder exists. If you'd like to donate, that would be wonderful, and I've reblogged some links for that. You could also probably find some online with a little research. But my main goal here is just to raise some awareness! That is the whole purpose of the month, after all :). If you want to know more, please don't hesitate to reach out to me or do some research. I might even be able to provide you with some resources :). Everyone's experience with EDS is different, though, so I'm just one opinion. For me personally, my symptoms worsened about a year and a half ago, and I got my official diagnosis (the previous one was Hypermobility Spectrum Disorder, which is a general term) just a few weeks ago, on April 22nd, 2022. I'm quite new to this disorder and this community, so despite my research, I don't have much personal experience yet.

Also, the symbol for EDS is a zebra! Specifically, a zebra-patterned ribbon - think the pink ribbon for breast cancer. People with EDS are commonly called Zebras, due to the medical saying "If you hear hoofbeats, think horses, not zebras." The saying means that a symptom is usually not indicative of the rare disorder, it's indicative of the common one. But, there are the rare ones that exist! EDS is one of them, often being missed. A few other diseases go by a zebra, but EDS is the most common one. So, if you want to show your support, post some zebras!!

Lastly, there are many other underfunded disorders and diseases that have awareness months in May, so maybe look them up and learn a little bit :).

Thank you for reading this, I truly appreciate it. I am sorry that it got so long - I have a lot to say on this topic and it's not often that I get the chance to.

Happy Ehlers-Danlos Syndrome Awareness Month!

Have a great day 🥰🥰🥰🥰.

#ehlers danlos syndrome #ehlers-danlos syndrome #eds #zebra stuff #zebra #zebras #medical zebra #medical zebras #ehlers-danlos syndrome awareness month #ehlers danlos syndrome awareness month #eds awareness month #awareness month #may #medical #chronic illness #chronic disorder #please check out some other posts and resources!! #they're great :))) #just if you want to though!! :D #I'd love it if you did <3333! #oasis's zebra chatter #have a great day y'all :))) ❤️❤️❤️❤️!

[autisticdreamdrop]

disabled things 22

flare ups is not your fault

#disability things #disabled things #flare up #flare ups #spoonie #disabled #disability #chronic disorder #chronic disease #chronic fatigue #chronic illness #chronic pain #illness #ill

[ruusutarha]

They're saying im not doing enough, but imagine living with constant pain flare ups, chronic migraine and bpd and still try to live the life in this economy. I wish there was a way out, maybe a coma would be lit

#fibromyalgia #chronic fatigue #chronically fatigued #scoliosis #personal hell #fatigue #i cant handle this no more #chronic pain #chronic disorder #actually bpd