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spookysalem13 · 7 months

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I'm chronically ill. I'm disabled physically and mentally. I live a rough life from day to day. People always tell me how strong I am.

This may be with the best of intentions but in all honesty I'm not strong, I'm very weak from being broken down every single second of my life from my chronic illnesses.

I don't get to live my life, I'm surviving not thriving.

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emanonandtheirshitposting · 2 months

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my leg hurts → i start walking with a cane to ease the pain → my hand starts to hurt from using a cane → my leg AND my hand now hurt

fml dude

#ehlers danlos syndrome #disability #disabled #chronically ill #chronic pain #chronic illness #mobility aid #osteoarthritis

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dashing-hyphen · 6 months

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Shout-out to my buds with degenerative conditions!! I know the word degenerative carries a lot of negative connotations, and feels really scary, but we got this!

#cripplepunk #cripple punk #cpunk #arthritis #osteoarthritis #disability #disabled #physical disability #homies im tired #but could use some positive vibez

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schizoaffectively · 2 months

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Anyone else younger with arthritis, of any kind?

I’m 24, gonna be 25 in two months, and have a kinda generic dx of inflammatory arthritis (not a specific kind like rheumatoid or psoriatic as of rn)

If any other fellow youngsters with arthritis wanna talk or share their experiences and talk about it feel free to message, comment, or send an ask!!!

#all blogging #arthritis #inflammatory arthritis #rheumatoid arthritis #psoriatic arthritis #osteoarthritis #chronically ill #chronic illness #spoonie #physically disabled #physical disability #actually disabled #cripplepunk #cripple punk #cpunk

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wheelingwithgrace · 27 days

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Disability can absolutely make you feel like a failure. I don't think that's talked about enough. Especially when it strips you of life experiences/milestones. At 16/17 years old, most teens are driving around and getting their first car. That was the age I truly started feeling different from my peers. I was stuck riding the school bus and relying on family and friends to take me places while everyone else my age had this newfound freedom. I started college and then had to drop out because I wasn't receiving the accommodations I needed or knowing what I wanted to do with my life. "You should already know what you want to do! What's your problem?" My problem is that I didn't get the same push into adulthood as everyone else. I didn't get the same freedom they did. I've always had to rely on someone. In high school, I wasn't worrying about my future. I was worrying about my health. When my next seizure would be. If I would have a seizure in the middle of class. If I was going to be bullied or assaulted again. Flash forward - I'm now working a job full time and just got diagnosed with all kinds of stuff in my lower spine including a bulging disc facet arthrosis, and facet effusions. Knowing that this is progressive and I might need surgery if conservative treatments fail - I genuinely don't know how I'm expected to live a proper life. My manager is pissed at me for having to go to doctors appointments and it's so hard.

#disability #disabled #spoonie #actually disabled #chronic illness #neurodivergent #physical disability #actually chronically ill #disability rights #invisible disability #seizures #accommodation #osteoarthritis #herniateddisc

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talkethtothehandeth · 9 months

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As much as I agree that people who have EDS shouldn’t talk over people who have worse disabilities than us, and as firmly as I believe that disabled people should let other disabled people speak about their struggles without comparing it to EDS, I need you to know that having EDS, especially my type— the one you find more often than other types, is not just “being bendy”.

I was diagnosed with EDS when I was a baby. I was very lucky, and was able to receive treatment (whether good or bad) quicker than others. However, EDS caused my hip dysplasia, it caused the condition that affected my mobility to the point where I needed three corrective hip surgeries; it was the cause of my bone not forming, I needed a bone donor to aid in correction. I have three long scars on my bikini line where Dr Caroll (from Shriner’s in Utah) cut into me in order to give me a better chance of having less limited mobility.

EDS isn’t just me being able to play bendy straw with my hands, it isn’t just me having to deal with “fake dislocations, it’s subluxations so it’s not that bad”. It caused my scoliosis, it caused my arthritis from my joints going out of place so often. I was diagnosed with osteoarthritis as a child, but as I got older, my arthritis spread to more places. I have burning nerve pain that makes me want to die, I have partial paralysis whenever my body decides to attack me spontaneously, I have dystonia, I have hearing loss, allergic reactions, and pain in every joint in my entire body. From head to toe, all of my joints, all of my muscles.

EDS is something that has severely impacted and negatively effected my entire body. It took everything from me, it took my already limited mobility, it took my peace, it took my mental health, it took my most beloved hobby ever— riding horses. I cannot sit to play piano, use my hands for my guitar, sit in a chair for more than 30 minutes without my back muscles screaming.

I took 14 pills every single day with multiple prescriptions because of what EDS has caused. I am undiagnosed with something that nearly killed me last year, everyone was preparing for me to die, and it has been dismissed by anxiety or an eating disorder, it is caused by my disease. EDS will affect me for the rest of my life.

EDS isn’t “just” being hyper mobile. This isn’t just a small disease that people go through, it is life altering and life compromising and life threatening from all of the comorbidities that come along with it; it is debilitating, it is isolating, it is pain that cannot be treated with even IV morphine, it is a constant, unrelenting acid rain condition just as many other physical disabilities.

People who have EDS shouldn’t try to play the Sick Olympics, we shouldn’t go to someone’s page and say “I’M JUST AS SICK AND DISABLED AS YOU ARE”. We should take the time to listen to people who have it worse, because so often they get ignored by abled people, they don’t need other disabled people to say that their conditions aren’t worse just because we have it bad. So many people are definitely more disabled than I am, and that absolutely does not erase my struggles.

Every physical disability affects the body in different ways, and every physical disability isn’t necessarily comparable to others. My degenerative arthritis isn’t the same as someone’s ankylosing spondylitis. My joints are fucked and my mobility has been significantly decreased as my disease has progressed. I am not going to compare my knees that will need to be replaced to someone whose spine is literally fusing together. Even though it’s a form of arthritis, it isn’t the same as mine and it isn’t my place to pretend it is.

But someone saying “it’s just hyper mobility” is perpetuating a harmful narrative, because people already don’t believe us, our stuff doesn’t show in labs and it only shows during further and extensive testing that many doctors don’t want to pursue because we’re “faking” or “being over dramatic”, because it isn’t “that bad”, it’s just bendy joints, it’s not debilitating./s It isn’t just being bendy, it is so much more and doesn’t need to be dismissed solely because it isn’t the same or as severe as someone else’s condition. Even if someone does have it worse, it doesn’t mean that EDS isn’t bad, and just because someone has EDS, it doesn’t mean it’s always comparable and needs to be shouted to the world on people’s posts about a completely different situation.

#personal #disabled #cripple punk #chronic pain #chronic illness #arthritis #ehlers danlos syndrome #scoliosis #chronically ill #important #postural orthostatic tachycardia syndrome #physical disability #physically disabled #osteoarthritis

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becauseanders · 1 year

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i hate you ehlers-danlos syndrome i hate you pots i hate you chronic migraines i hate you brainstem auras i hate you central nervous system complications i hate you degenerative disc disease i hate you hypotension i hate you osteoarthritis i hate you fibromyalgia i hate you tmj disorder i hate you carpal tunnel i hate you mcas

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occasionallyvivid · 7 months

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I hurt and I'm mad about it

#chronic pain #hypermobility #osteoarthritis #elhers danlos syndrome #chronic illness #i want to do things without paying for it later #now i'm sad

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agrownupgeekgirl · 7 months

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#chronic illness #chronic pain #chronic fatigue #fibromyalgia #osteoarthritis #invisible illness #personal

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fantasy-store · 9 months

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arthritis haver flags

flags specifically/exclusively for folks with these conditions, general arthritis flag found on an older post

made because i recently found out not only does it run in the family (both osteo and rheumatoid) but i am highly suspected to have it myself.

transx/transid stay the fuck off my posts. not for you

Osteoarthritis/OA + Rheumatoid/RA

Osteoarthritis(left) <- a flag for those with osteoarthritis, a form of arthritis where the cartilage in joints begins to break down causing mobility issues, pain and so on.

Rheumatoid(right) <- a flag for those with Rheumatoid Arthritis, a form of arthritis where the body's immune system attacks healthy cells in the joints causing pain, inflammation, mobility issues and so on.

Psoriatic/PsA + Fibromyalgia

Psoriatic(left) <- a flag for those with psoriatic arthritis, a form of arthritis where the skin develops rashes. this effects the skin and nails, causing large red rashes and pitted nails.

Fibromyalgia(right) <- a flag for those with fibromyalgia, where the body has pain, soreness and tiredness all throughout, causing sleep issues and heightened sensitivity.

Gout

a flag for those with gout, when urate builds up as needle-shaped crystals in the joints, leading to swelling, pain and more.

[id: a green to white gradient box with a gif of candles and witchcraft tools on a shelf in the background and dark green text on top of the image reading "dni if transx/transid, radqueer, terf. more in pinned post. free to use/identify so long as you respect my boundaries. exclusive terms/flags are non-debatable". :end id]

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annasellheim · 16 days

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Next part

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spookysalem13 · 4 months

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Just a fellow spoonie 🥄 here to share a relatable hilarious 😄 video.

Being chronically ill, you have to learn to find the humor in your diseases. For me, it's a major way I get by day to day.

This made me smile, I hope it can make you smile as well.

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emanonandtheirshitposting · 2 months

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tw: self harm ? kind of. im just venting

sometimes I purposefully make my pain worse by doing something I know will hurt like lifting heavy things or not using a cane or walking too much. because I need to know that I'm not just imagining it and exaggerating and/or faking it for attention. the same with mental illness

the majority of my life my family would neglect my health issues if they weren't obvious and visible so yeah I think that's why I need constant reassurance that I am in fact ill by making myself feel worse

#vent post #vent #tw vent #chronically ill #chronic pain #disability #disabled #ehlers danlos syndrome #chronic illness #osteoarthritis #hypermobile ehlers danlos #i need therapy #text post #text

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dashing-hyphen · 6 months

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cons of having arthritis: pain

pros of having arthritis: get to wear fingerless gloves and look stylin'

#cripplepunk #cpunk #cripple punk #arthritis #osteoarthritis #oof ouch my bones #emmetts typing

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sysboxes · 3 days

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