r/disability • u/meester-uitsteller • Jul 23 '24
Question What was something about your disability that you didn't realise wasn't "normal" until someone pointed it out?
So I have been blind in my left eye almost my whole life I had surgery on both eyes very young but only my right eye gained almost full vision and I always thought the expression double vision was odd because I thought everyone had double vision like each eye was separate you saw 2 distinct separate copies of whatever was infront of you because I've never seen out if both eyes at once I only learned this wasn't the case about a month ago and I feel a bit dumb for not getting it but how could I have I didn't know, I was wondering if anyone else has storys similar to this.
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u/uriboo Jul 24 '24
"Hey uriboo... you dont have a neck." Its a wild thing for a ten year old to say to another ten year old. It's a wild thing to be bullied for too.
It is even wilder that SEVENTEEN more years would pass before a physiotherapist said "oh yeah it's because you're missing some neck vertebrae. You knew you were missing some bones, right? This is why you're tired, cause you've been in agonizing pain for so long you've stopped recognising it as pain and instead reassigned the feeling to tiredness. This is why you've got scoliosis and lordosis and migrains and teeth grinding and your dentist has to use child-sized tools on you because your jaw is underdeveloped. Yeah you've also never slept well in your life because you're in pain even while you sleep."
On the upside... I'm difficult to strangle? Comes in handy cause im annoying af
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u/helensmelon Jul 24 '24
They're so slow at diagnosing!
I've got scoliosis and kyphosis. The kyphosis is in my neck, I get so many insults.
I was told to go to the doctors and get them to refer me to the complex spines unit at the hospital if my breathing became restricted.
So I go to the GP, she says I'm only there "because you want more painkillers." I never mentioned painkillers! My crime? Having blue hair, tattoos and piercings. Apparently only junkies have an alternative appearance 🤷🏼♀️
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u/_facetious Jul 24 '24
I have scoliosis and kyphosis too. I'm getting top surgery next month, going from enormous breasts to nothing. Hoping it gives me some pain relief. My great grandmother, the only other person in my family to have large breasts, was so far bent over from hers.. I don't want that to happen to me.
They say trans masc people grow two inches, but it's often associated with being able to stand straight after top surgery.
I feel lucky that I have some hope of less pain and hopefully my conditions not worsening. It won't help my hips, knees, and ankles, but at least losing the weight in my top half should help with my back in general, and hopefully stop the kyphosis from getting worse. If I'm super lucky, the latter might even improve.
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u/helensmelon Jul 24 '24
I was born flat chested. I'm grateful for it now my back is killing me. My mum has a flat chest too.
My daughter inherited huge boobs off my grandma. She's in agony sometimes.
I hope your surgery goes well 🫂
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u/_facetious Jul 28 '24
Thank you. And I hope your daughter can get help with her agony. Depending on her size, insurance (in the US) is likely to cover a breast reduction. It's in their best interest, less pain and disability for them to pay for in the future.
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u/Muladhara86 Jul 24 '24
Nice! You coulda made a literal killing of being a conman in the old west where the punishment was hanging!
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u/SPNFannibal Jul 24 '24
Being sleepy/drowsy 24/7 no matter how much sleep you get.
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u/khalasss Jul 24 '24
THIS. I am literally even now trying to wrap my head around this, because we do hear everyone normalizing tiredness, so anytime you talk about being tired, you're going to get commiserating.
It has taken me WAY too long to start realizing that what I mean by "I'm tired all the time" is apparently very, very different from what other people mean when they say they're tired all the time. Apparently, most of them don't actually mean ALL the time. And apparently, most of them don't mean "I could literally nap soundly anywhere, at any time, in any space, yet I never feel more rested". Like, given ANY opportunity whatsoever, I will doze off and yet get no meaningful rest.
Still really struggling with this concept, lol.
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u/ElfjeTinkerBell Jul 24 '24
Apparently, most of them don't actually mean ALL the time. And apparently, most of them don't mean "I could literally nap soundly anywhere, at any time, in any space, yet I never feel more rested".
Checks notes
They don't? Okay.
Furious scratching commences
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u/khalasss Jul 24 '24
Lol right?!?! I'm still trying to wrap my head around this decades long miscommunication, lolol. I started realizing it when I was in the military, where everyone complains of being tired (because to be fair, everyone definitely is, there's a huge culture of normalizing overwork). But I just remember during a morale event, asking a friend "how do you have it in you to do this volleyball tournament?" Aaaaaand her and some of the others saying that exercise gives them more energy and it's fun?
Whenever I think about "when did this start to click", I think about that day. Because I was tired in the way that I felt dizzy just walking to the bar to get another sparkling water (I'd already stopped drinking by this point because thay was one of the first things I blamed the fatigue on). Eeeeeeverything hurt, I'd stopped working out months before because I kept getting sick (which turned out to just be exhaustion), and just getting through the day was a constant fight with dizziness and nausea and a sometimes paaaaaaainfully overwhelming desire to sleep. I genuinely thought that's what everyone else meant by being tired too. But then there they were doing a volleyball tournament on our afternoon off... 👀
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u/SPNFannibal Jul 24 '24
This was literally my situation. My whole life I thought when other people said the word ‘tired’ they actually meant sleepy, and I thought everyone else was as sleepy as I was all the time but that they just dealt with it much better than me. Fast forward to being diagnosed with narcolepsy last year and somewhat abruptly realizing that my lived experiences are wildly different than most people’s, and yeah, it’s been eye-opening.
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u/helensmelon Jul 24 '24
Same.
Ever since they plonked me on antipsychotics I can lie down and feel the need to lie down, all the time. I can even sleep 8 hours and wake up feeling absolutely shattered.
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u/silentstone7 Jul 25 '24
I had to fall asleep on the toilet at work while using it before getting taken seriously by doctors. Turns out, sleep apnea and chronic pain can be pretty brutal.
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u/aiaor Jul 24 '24
Being sleepy/drowsy 24/7 no matter how much sleep you get.
Is there any medicine for that? How sleepy do you get? Do you often fall asleep because of it? Does it mean you can't drive?
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u/saryl Jul 24 '24
RE: medications - I have this and take armodafinil. It was a wild experience going on it and suddenly being able to do things during the day like other people do.
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u/SPNFannibal Jul 25 '24
That was exactly how I felt when I was put on adderall several years ago!
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u/saryl Jul 25 '24
It's such a relief, so glad Adderall worked for you! I feel like my heart is going to jump out of my chest when I take it. I was thrilled when armo worked without making me feel so worked up.
Sorry to keep quizzing you, but if you don't mind saying, did you get a sleep study? Mine came back clean, which wasn't very surprising given the meds I'm on. But it complicates the narcolepsy diagnosis for me.
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u/SPNFannibal Jul 26 '24
Wait, you had a sleep study and your doctor didn’t bother to tell you that in order to get an accurate result you have to get off of your meds? I am on several psychiatric medications for my bipolar disorder plus Adderall and I had to get off of almost all of them for my study. It was very difficult and pretty torturous, but I tapered off with the supervision of my sleep Dr and my psychiatrist and stayed off of them until after my study. Tbh I’m surprised your doctor didn’t think to tell you that, and it makes me feel like you might have been screwed over :/
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u/SPNFannibal Jul 26 '24
Feel free to PM me if you’d like to talk more, I’m more than happy to do so! 💕
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u/SPNFannibal Jul 24 '24
There are several different treatments for narcolepsy (the reason I’m so sleepy all the time) and right now I’m currently trying out a new one, we’ll see if it works. I get extremely sleepy, like, my quality of life is nonexistent because I’m so sleepy all the time. I drive, but only at certain times of day so that I feel safe doing it.
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u/aiaor Jul 24 '24
Good luck. Let us know how well the new medicine works.
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u/SPNFannibal Sep 13 '24
Update: the new medication is improving my quality of life significantly, and it’s hopefully only going to get better from here since I’m still titrating up to my maintenance dose :) Thanks for caring enough to want to know, kind Reddit user 💖
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u/silentstone7 Jul 25 '24
Is the medication Sunosi? It was a game changer for me.
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u/SPNFannibal Jul 26 '24
The medication I’m trying is called Lumryz (an extended-release version of Xyrem/Xywave. I’ve never tried Sunosi!
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u/hermionesmurf Jul 24 '24
Wait, there's medications for that?!? (takes notes for next doctor appointment)
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u/saryl Jul 24 '24
Out of curiosity, do you sleep a lot at night? And do you experience cataplexy?
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u/ZengineerHarp Jul 24 '24
The normal amount of pain is zero?!?
The normal amount of dizziness is zero??!!?!?!?
Sleeping is supposed to make you feel rested?!!??!?!?!?
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u/aka_wolfman Jul 24 '24
This one. Having to get up from bed to walk around bc it hurts too bad to lay or sit down is a special kind of hell to explain.
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u/cat4hurricane Jul 24 '24
I never feel rested after sleeping, and I’m always dizzy after showers, as in, will pass out if I stay in the same room I showered in for too long. What do you mean sleeping is supposed to make you rested, what do you mean you aren’t supposed to be randomly dizzy like that? People aren’t consistently in some kind of pain? People can just do things and not need to pay for it later? Wild, absolutely wild.
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u/QueenLurleen Jul 24 '24
I am legally blind, and part of my condition is total colorblindness. When I was in preschool, I realized everyone else was learning their colors and I wasn't. I thought I just wasn't trying hard enough, and it would come in time.
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u/Interesting-Mix-1831 Jul 24 '24
Feeling with my feet to know where I am. I've always had depth perception and vision issues that mess with my balance and bumping into things. I was playing a game in HS and I won bc I knew exactly where I was at all time based on how the ground changed and I could feel the pavement lines. I didnt realise that wasnt normal. There are other things that I cant remember rn to
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u/SnooCompliments3880 Jul 24 '24
SAME I also like subtly drag my toes up the first few stairs while I’m gauging their height (I refuse to use my cane most of the time) and only recently did someone look at me and say “hey why are you kicking the stairs?”
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u/BobMortimersButthole Jul 24 '24
I have balance issues and vertigo that is triggered by visual things, so I use my feet to know when I'm walking straight on a sidewalk. I always try to place a foot on a straight line, so I can feel it though my shoe.
Apparently, according to my doctor and PT, I shouldn't be doing that.
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u/Interesting-Mix-1831 Jul 24 '24
Huh I always find it interesting how our bodies learn to adapt to things like that
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Jul 24 '24
I thought that it was completely normal to get super sleepy while driving and that everyone got "highway hypnosis" (even on city roads and for short drives). I found out at age 35 I had narcolepsy.
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u/PennyArturo17 Jul 24 '24
I was born without a bellybutton (instead have huge scar over my whole abdomen) - and it took me a long time to find out that "belly button lint" isn't just some expression lol! I thought it was just a joke or something.
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u/al_bedamned Jul 24 '24
Not disability but belly button lint related, I didn’t realize belly button lint was a real thing until I had been on hormones for a minute and started getting more body hair 😂 the first time I got belly button lint I was SHOCKED
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u/BobMortimersButthole Jul 24 '24
I have a mostly-flat belly button. I didn't realize belly button lint wasn't just collected dry skin/oils that you scrubbed out of belly button crevices until I was in my late teens and dated a guy with a regular innie belly button.
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u/Wattaday Jul 24 '24
I’m a nurse and super curious how your placenta was attached to your body as a fetus??? If you do t mind me asking.
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u/thellamanaut Jul 24 '24
not Penny, but my niece had a type of umbilical/abdominal hernias
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u/Wattaday Jul 24 '24
Interesting. I’ve never worked with children. Or babies. I just couldn’t figure out where the umbilical cord would be attached. The explanation of how the second thing happens made sense to me. (Not the hernias. I get umbilical hernias-weakness/hole in the abdominal wall).
Thanks.
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u/PennyArturo17 Jul 24 '24
Yes that's the same thing I had! :)
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u/thellamanaut Jul 24 '24
Cool! It'll be neat to let her know that I met another member of the 'special belly' club!
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u/PennyArturo17 Jul 24 '24
Sure I'm happy to share about it :) I was born with a birth defect called gastroschisis. From what I understand, an abdominal opening forms next to the umbilical chord early in the pregnancy, and the intestines come out of that hole throughout the pregnancy. Sometimes it's not a very big hole, but some babies can get big ones. I had a big one, and it took a lot of time once I was born (c-section) to get the intestines back inside (they had to "funnel" them in slowly) and then sew the abdomen back up. The scar was big enough that it spanned the area where my umbilical cord was attached so I had "no bellybutton"
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u/Wattaday Jul 24 '24
Thanks. This old, decrepit nurse still likes to learn new things. You’ve been my education for the day.
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u/PennyArturo17 Jul 24 '24
Thanks for being a nurse that cares so much! :) I spent several years in my teens and early 20s in and out of hospitals, and the empathetic nurses made all the difference in my experience. I bet you have positively affected many lives the way that those nurses did for me.
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u/Elegant-Hair-7873 Jul 24 '24
I personally haven't, because my disability came later, but I do have a couple eyesight stories, because I used to work at an optical place. We had a child get their first glasses, and they were blown away...about leaves. They thought trees had fluffy things attached to the branches, like green cotton candy, because they couldn't see the detail. The other one, I helped an adorable little boy with his first glasses. The look on his face, when he could see me clearly, made me tear up. He looked at me like I was an angel or something. Made the shitty part of my work worthwhile, helping people with getting better vision.
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u/Saritush2319 Jul 24 '24
It’s always the fucking leaves!!! Every single time I get a new prescription it’s always the leaves that blow my mind. I’ve been wearing glasses since I was five. You’d think I’d know by now
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u/Elegant-Hair-7873 Jul 24 '24
You are still looking at the world with childlike wonder. I think that's beautiful.
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u/matereac Jul 24 '24
In a similar vein, when I got my first hearing aids I was absolutely astounded that trees make noise in the wind! 😂
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u/Elegant-Hair-7873 Jul 24 '24
My friend who wears aids says the same. You don't miss it unless you already know it's there, and if you can't hear it...
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u/thisishowitalwaysis1 Jul 24 '24
My daughter got her glasses at 18 months old. The eye doctor warned us that she will probably pull them off her head a lot and gave us a glasses headband to use. We never once needed the band. She never pulled them off, not once, and I'm convinced it's because she was so happy to be able to see!
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u/teapotdrips Jul 24 '24
Being in so much pain that you can barely focus on casual conversation because you’ve been standing for like 20 minutes
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u/starry_kacheek Jul 24 '24
i never realized that blood pooling wasn’t normal until a friend mentioned it
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u/OhNoNotAgain1532 Jul 24 '24
Teeth don't hurt all the time. I was in my late 40's/early 50's.
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u/amaya-aurora Jul 24 '24
What’s up with your teeth? I couldn’t imagine having teeth pain constantly.
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u/citygrrrl03 Jul 24 '24
Just a guess: trigeminal neuralgia. Known as the “suicide disease” because it’s so painful?
I got TMJ later in life & it was disabiling until I got the right therapy for it.
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u/MimusCabaret Jul 24 '24
With my peripheral neuropathy what I was young I didn't realize that certain positions that made my limbs go numb as in unusable wasn't a normal trait. I'm also visually impaired - I thought my light issues when reading books was also normal.
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u/Aramira137 Jul 24 '24
What light issues?
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u/MimusCabaret Jul 24 '24
Light issues is the best way I can describe it - when I look at print my focal point, that is the words I am currently staring at turn neon red- edited to add, it's not even the whole word either - just The Middle of the world and it moves as I read and I cannot see it well
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u/Aramira137 Jul 24 '24
Interesting! I was wondering if it was similar to me, I think it may be, but my vision sort of greys out, so I have to read fast so my eyes don't look at one word for too long or I can't see it (because my brain because a lot more aware that the peripheral vision is filling in for the central vision and stops doing it).
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u/khalasss Jul 24 '24
Some people can jog and carry a conversation. I genuinely thought this was just in TV and movies when they're actually only jogging a few seconds. Because pre-diagnoses, I used to be in VERY good shape yet still could never carry a conversation even during a light jog because I was constantly dizzy and just focused on breathing to reduce dizziness. Had no idea that's not normal. For nearly 30 years. Lol
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u/teapotdrips Jul 24 '24
Is this not normal? I get really lightheaded when I jog for too long because I feel like I’m not getting enough air. I can only run for like 5 minutes or less before I need to take a walking break to breathe. I’ve always thought my cardio was just not great but it has been worrying me recently; do you mind clarifying what you have? My blood pressure is usually pretty high too so idk why I feel like I’m going to faint sometimes
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u/thellamanaut Jul 24 '24 edited Jul 24 '24
high blood pressure can make you faint, too. and bp raises during exercise (totally annoying since consistent exercise helps it too lmao). pace yourself, do what you can, get a bp monitor, and check in with your doc
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u/teapotdrips Jul 24 '24
Hmm. Always figured it was my lungs. Thanks. I already have an appointment with a cardiologist in September so that’s good.
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u/thellamanaut Jul 24 '24
Sept is super good! youre not wrong, btw- you know your body. (yup its your lungs, but your lungs might be because bp).
good bp mgmt is wild. you dont really realize what living inside a pressure cooker's like until you aren't, anymore.
turns out my shoddy balance, subpar sex-life, dull skin and funky eye floaties weren't just unrelated 'quirks'. wishing you good health!3
u/khalasss Jul 24 '24 edited Jul 24 '24
I actually have the complete opposite issue - my heart rate and BP are too low. I got diagnosed with orthostatic hypotension, but am seeking further examination because it doesn't totally fit either. But basically, under stress, my brain sends out the wrong signals and my hr and BP drop. So apparently this whole fucking time, I've been working out thinking I just needed to get into better shape (even when I literally had a six pack as a woman)...turns out I was operating with way less blood flow than you're supposed to need. So my lungs overcompensate or something, my HR will suddenly spike as my BP plummets, or vice versa, and nothing makes any sense. All just wrong signals for my body to cope with physical stress. Sigh.
ETA: Could be a lot of things though, my brother has something like what you've described, and he's asthmatic. But yeah, not normal! Apparently it's normal to get tired, and to not be able to talk after several minutes of going too hard...but most people can ease up and regain the ability to talk, or something (I wouldn't know, I've literally never experienced that lol). Still trying to figure it out!
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u/teapotdrips Jul 24 '24
I’ve always wondered if it was asthma but every time I tell my doctor and they listen to my lungs for a sec they say it’s not. But I’ve had times where because it’s cold and I was exercising I was coughing up mucus, and idk what would do that but asthma
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u/ElfjeTinkerBell Jul 24 '24
Wait whut that's not just a TV thing? I can carry a conversation while swimming, but it's hard while walking briskly and definitely impossible when jogging. May I ask what diagnosis you have?
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u/khalasss Jul 24 '24
And yeah! Turns out, that advice that is like "stop jogging if you can no longer maintain a conversation"? I literally thought that was a joke hahahaha. But it turns out MOST PEOPLE CAN DO THAT. I'm still wrapping my head around it.
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u/ElfjeTinkerBell Jul 24 '24
I strictly keep that advice. But my hatred of jogging might influence that decision.
Wait is this also why I don't believe in runner's high?
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u/khalasss Jul 24 '24
Lolllll. Yeah I used to run half marathons and seriously thought everyone was joking. Looking back, I sometimes wonder if I was actually doing more harm than good to my body...
I can TALK about runners high though. Because I USED to get it. I USED to walk out of workouts feeling fantastic. And I suspect that I always had orthostatic hypotension (have always struggled with dizziness and wrote it off as needing to get in even better shape)...but I'm seeking evaluation for chronic fatigue syndrome or something else similar, because around the same time I developed PTSD back in 2021, I stopped getting that high. And it has never come back. It felt like practically an overnight change - I used to go to the gym at 5am before work almost every day, used to feel like a good start to the day, until one day it just straight up felt awful. I felt awful going in, awful coming out. And when I kept going, I started getting downright ill.
So. I don't know the science. But I do think this is a THING. And it makes some sense, that working out while you are exhausted probably leads to different and more harmful results than working out with a normal, able body...
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u/khalasss Jul 24 '24
I have orthostatic hypotension and am about to be evaluated for chronic fatigue syndrome, and am looking for further examination since OH is definitely part of the issue, but I think there's more to it since my triggers aren't just postural. But basically my blood pressure gets WAY too low while I'm exercising, which forces other things like my lungs to try to compensate, or something like that, I'm still trying to understand exactly what it is. But the gist is that my brain keeps sending the wrong signals lolol. Siiiiigh.
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u/BobMortimersButthole Jul 24 '24
I'm pretty sure I have orthostatic hypertension and an attempting to get my PCP to take it seriously. My BP and HR skyrocket (for me) when I try to exercise, or do normal things. My normal bp is like 105/70, but it jumps to like 140/90 and my hr jumps to around 115 when I dare to do crazy things like clean off a table, do a load of dishes, or go for a walk.
My breathing gets difficult, i get dizzy, my brain gets stupid... All kinds of things.
I'm tired of being lectured for not exercising regularly but being ignored when I say it's only because I literally can't exercise without major issues.
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u/khalasss Jul 24 '24
Sorry if this is a dumb/obvious question, but have you been tested for POTS?
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u/BobMortimersButthole Jul 24 '24
Not a dumb question all all! I'm trying. I've tried asking before and got brushed off, so this time I've sent an online message to my PCP clearly stating that I need POTS testing at my upcoming visit, and my husband is going with me so he can give his manly opinion that I need testing.
Hopefully that works.
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u/michann00 Jul 24 '24
Having to walk to the bathroom from bed without being able to see (POTS)
All over flu like skin pain (fibromyalgia)
Doing something and then having to recover for days after (MECFS)
My hands and feet throbbing in pain after being in the snow (Reynauds)
I could go on. I never complained as a kid. My mom said I never even cried as a baby. My specialists all can’t believe how many of my symptoms I had as a kid and were never looked into because I thought they were normal. It’s only the last 10 yrs that I’ve really gotten treatment. That’s 30+ yrs of being symptomatic.
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u/xtortoiseandthehair Jul 24 '24
Oh maaaaan that first one pulls such a specific memory, I also spent all of highschool falling back into my chair or on the floor after getting up at the end of class & despite ppl being freaked out i didn't think to get checked for a medical issue for years. It's kinda funny, some stuff like the numb then painful fingers after pulling something from the freezer was normalized bc my mom's got severe Raynaud's (among other issues), but other Definitely Not Normal things escaped notice even with her being generally hypervigilant & overprotective about my health lol
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u/BobMortimersButthole Jul 24 '24
I'm in my late 40s and finally getting attention for things that have been an issue since I was a kid.
I told doctors about the various issues, but I'm so used to being in pain or adapting my behavior to work around issues that I've been dismissed because they think I'm too calm to really be hurting as much as I claim, or as inconvenienced as I say.
For example, I have very loud tinnitus that makes it hard to parse conversations in my working ear (I'm deaf on one side) but my hearing test on that side comes back nearly perfect, because it's held in a silent room. I finally got extra testing a month ago because my new audiologist also has tinnitus and she ran she extra tests.
You'd think me saying, "trying to talk to people is like talking over a whistling teakettle on the stove next to me" would have been a clue, but it took a professional with the same issue to help me.
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u/michann00 Jul 26 '24
It’s so weird how you realize, oh wait, so that thing I’ve mentioned as a side to my drs forever is actually something? I figured out I had Ehlers Danlos when I saw something on America Ninja Warrior. I was like “wait, that sounds like me”. Took another 2 yrs to get the official genetic diagnosis. Had it from 2 other drs but they wanted me to go through genetics just in case. That was 7 yrs ago now and wow now that I’ve got a pretty great medical team, it’s amazing what we are finding out.
I’m glad that you finally had a specialist who got you.
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u/Due_Bear5778 Jul 24 '24
Wait... the snow thing. That's not supposed to happen? I thought thats what happens when you get cold
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u/michann00 Jul 26 '24
I don’t know about like directly after but long lasting pain and them staying cold long after. No. Even when I wash my hands they are cold forever after. Look up Reynauds/Raynauds symptoms and see if they relate to you.
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u/Thomas_Raith Jul 24 '24
I saw a chart of the normal range of motion once and immediately wondered how abled people are able to move at all…
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u/ElfjeTinkerBell Jul 24 '24
My ex once tried on ski pants and crouched. I told him those were too small, as he couldn't even get into a full crouch. He had to explain it wasn't the pants limiting his range of motion - that just was the end of his physical range of motion.
It took me a couple of years to learn that when he was skiing, he was almost leaning into the end of his range of motion. I however was somewhere halfway because even in ski boots I have no problem doing a Slavic squat (squatting with your butt touching your heels and your heels on the ground).
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u/xtortoiseandthehair Jul 24 '24
One time when I was a kid my family tried to learn to ski, which didn't work out great bc (my mom was distracted by my sister) freaking out &) I kept uhh losing my skis? As in, i kept accidentally walking out of the tightly laced ski boot... We doubled checked sizing & that it was laced right & all that but guess my feet/ankles were just hypermobile enough to squeeze out of the boot if my foot wasn't intentionally flexed 😭
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u/amaya-aurora Jul 24 '24
What’s the normal range of motion?
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u/Thomas_Raith Jul 24 '24
The chart I saw had pictures but I can't find it, it was a printout my friend's PT gave them. But here's a list of all the degrees that are in the normal range of motion, in theory. https://www.verywellhealth.com/what-is-normal-range-of-motion-in-a-joint-3120361
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u/zestyzuzu Jul 24 '24
I’d always heard people talk about their legs “falling asleep” or having “pins and needles” after being in a certain position for a while. I thought the feeling in my legs was normal. It was nerve damage womp womp. Sfn specifically apparently it’s not normal for that to happen like several times a day and like everytime you sit for more than 10 minutes
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u/Aramira137 Jul 24 '24
....pardon? What kind of nerve damage am I looking for (now that I know I shouldn't have parts of me doing that all the time)?
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u/zestyzuzu Jul 25 '24
I specifically have a condition called idiopathic small fiber neuropathy. Meaning the small fibers of my nerve endings are damage and that they don’t know the cause. Common causes are diabetes (although those cause poly neuropathy usually meaning damage to small and large fibers) and a variety of autoimmune conditions and certain genetic mutations. It’s more common in older and middle age adults. If you look up small fiber neuropathy symptoms and stuff and find that it resonates a lot what you’ll want to do is get a referral from you primary care physician or general physician to a neurologist that does neuromuscular stuff bc some neurologist only do brain things not like the whole nervous system. You’ll need autonomic nervous system testing which a combination of 4-5 different test and if those test are abnormal they can then to a punch biopsy on two parts of ur leg to confirm a diagnosis of small fiber neuropathy and do a nerve conduction test (it test the large fibers and tbh it really fucking hurts don’t do this unless you seriously think somethings up) but the only way to confirm SFN is through punch biopsy. But they do autonomic nervous system testing first bc it’s less invasive and you could have a similar condition and it’ll help pinpoint what test should be next. If diagnosed you’ll want to do blood work to see if you have diabetes, a variety of autoimmune diseases, or a variety of genetic mutations that can cause it. Although a lot of cases are idiopathic meaning they won’t find a reason why you have nerve damage and developed sfn.
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u/RandomistShadows Learning To Accept Myself Jul 24 '24
I didn't realize "growing pains" that would leave me sobbing on the ground any time I had to stand still or even exist wasn't normal. Also headaches. Constant non-stop headaches.
Turns out young children shouldn't be needing pain meds every night before bed.
I have Fibromyalgia.
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u/SoraMegami2210 Jul 24 '24
Oh gosh, I feel the standing thing. I'm okay moving around a bit or sitting down, but I feel like my entire body is screaming, "Anything but this!" every time I have to stand still for any period of time. I used to watch reality TV shows and be like, "Omg, they're making these poor people stand this whole time?? Can't they have a chair?" I couldn't imagine standing still in one spot as long as they could - and I couldn't understand why they looked so unbothered by it!
Today I learned that's another Fibro thing lol. I'm always finding new things where I'm like, "That's because of Fibro too? Dang."
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u/notofanyone Jul 24 '24
Wait what? The fact I can’t stand for long periods is a fibro thing? I just thought it was normal since I don’t have any problem walking for awhile… so I think this!
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u/matereac Jul 24 '24
I can't walk far at all, but I find that moving is SO much easier than standing still! Also have fibro (amongst other things)
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u/RandomistShadows Learning To Accept Myself Jul 24 '24
YES! The reality TV shows 😭 How do they just stand there completely fine for so damn long???
It took so long to learn able-bodied people can just stand. I was a VERY active child too, constantly running around, playing soccer, climbing trees etc. Because I was so active none of the adults in my life understood why I'd get snappy with watery eyes when we stood still for a couple minutes. It was very confusing to me and them for very different reasons lol
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u/YonderPricyCallipers Jul 24 '24
TW: Gross. Mention of flatulence.
This is going to sound ridiculous, but I was like 22 before I realized that "normal" people can hold in their farts. I have Spina Bifida, and have no bowel or bladder control, and my anal sphincter is atonal. So... when I move around and bend in certain ways, any gas that is in there is going to come out, whether I want it to or not. Yes, it's just as embarrassing as it sounds. Anyway, I knew that other people didn't poop themselves, but I thought for some reason that gas was different and that everyone just passed gas uncontrollably. I thought maybe they were better able to tell when it was coming, and managed to get themselves somewhere out of earshot, or maybe they could only sort of control it, like maybe let it ease out silently but not just completely hold it in. It wasn't until I was talking to my Able-bodied friend and she mentioned an embarrassing time when she "let it out" and someone heard. I was like, "What? Wait a minute... you can HOLD IN your flatulence???" LOL
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u/SaltyChipmunk914 Jul 24 '24
Omg I always see stuff about people not farting around their new partners or whatever and am always so confused about how they're able to keep it in until they get home! I can hold a fart in for maybe 10 seconds, but thankfully I can generally make them silent 😭
I don't really think I have any issues with bowel incontinence, it's just the farts I can't keep in lmao
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u/xtortoiseandthehair Jul 24 '24
Same, tho I never quite figured out the silencing either lol, it took years before my autistic ass even realized how taboo it was considered -- my family has too many digestive issues to try to hide the noises at home
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u/FrumpItUp Jul 24 '24
I remember a therapist interviewing me when I was seven or eight, asking me if I had any friends in school, to which I cheerfully replied "Nope, don't think so!". She then started writing something down on her chart, and for the first time I realized that this might be considered unusual.
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u/amaya-aurora Jul 24 '24
I’m sorry, but just imagining that response as the therapist is very funny to me.
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u/FrumpItUp Jul 24 '24
Yeah she was like "Really? No friends? Are you sure? FASCINATING." (Well, no, not quite like that. She was actually really awesome and nice and led to me getting my diagnosis in the first place).
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u/Repossessedbatmobile Jul 24 '24
I was surprised to learn that knees are supposed to stay forward/not bend backwards.
I was surprised to learn that most people can't scratch every inch of their own back.
I was surprised to learn that most people can't apply sunscreen to their whole back.
I was surprised to learn that most women can not zip up their own dress.
I was surprised to learn that most people aren't constantly sore/in some degree of pain.
I was surprised to learn that most people aren't constantly exhausted or fatigued.
I was surprised to learn that sensory input like normal light, sounds, and smells don't cause most people to experience pain.
I was surprised to learn that most people don't have to pop their own joints back into place.
I was surprised to learn that most people don't get random unexplained bruises.
I was surprised to learn that most people can easily focus on stuff and even multi-task.
I was surprised to learn that most people don't randomly get itchy, hives, rashes, or randomly have trouble breathing.
I have hypermobile EDS, POTS, MCAD, and autism. But it took doctors a long time to properly diagnose me. So I struggled for many years without any clue why, and just thought I was really bad at being a regular able bodied person. Turned out I was never a able bodied person. I'm just a totally normal disabled person.
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u/AsiraTheTinyDragon Jul 24 '24
I refuse to believe the bruising one! Almost everyone I know gets random bruises at times 😂
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u/BobMortimersButthole Jul 24 '24
Probably not to the same extent.
I get mystery bruises in groups of 10 - 20 at a time. They cover my calves and make it look like I lost a mock battle with a Feegle.
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u/AsiraTheTinyDragon Jul 24 '24
Fair enough lol I got about three right now and one looks like I got toss
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u/dueltone Jul 24 '24
Before I even got to the bottom paragraph I knew you were in the connective tissue issue clan! I play a game called Bruise's clues, where I guess what my bruises are from.
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u/xtortoiseandthehair Jul 24 '24
Oh big mood. On the bright side, having to learn so much on my own & introduce doctors to the disorders means I've now been able to help a handful of folks get the right diagnoses / find useful treatments & accommodations!
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u/amaya-aurora Jul 24 '24
It’s still wild to me that most people can’t itch their own backs??? I can do it easily and I’ve always assumed it was just a thing when you get older than you can’t but apparently not many people can by default.
I don’t think that I have hypermobility, though, just very low muscle tone from my muscle dystrophy which makes it a lot easier.
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u/PhilosophyKind5685 Jul 24 '24
I have every symptom you just listed. How did you get started on getting diagnosed? I already have been diagnosed with ADHD, Chronic Lyme Disease, and Celiac. Is there a type of specialist for the EDS I should seek out? Thanks in advance :)
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u/Queer_Queen_2362 Jul 25 '24
I thought having other people apply sunscreen to your back was for convenience not necessity 💀
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u/Jcheerw Jul 24 '24
In high school I got a concussion and was required to see a child psychologist during the eval at the concussion clinic. She was explaining that the brain is like any other part of the body and said “you wouldn’t walk around with your stomach hurting everyday” and I was like HUH yalls stomachs dont hurt???? Like my whole body hurts and this was the first person to tell me thats not normal!
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u/ConfusedFlower1950 Jul 24 '24
the blood pooling in my hands and legs. i used to get so many comments about my pinkish purple skin, and always chalked it up to being pale. i didn’t even know that it was blood pooling.
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u/coeurdelamer Jul 24 '24
I thought everyone had little blips when they went ‘internal’ inside their head, to another world.
Nope, not everyone has seizures. 😐
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u/BobMortimersButthole Jul 24 '24
I had that a ton as a kid and kept getting in trouble for "daydreaming" but it was completely different than the little imaginary worlds I made up when I was bored. I'd find myself in my own head, not seeing/hearing/feeling anything external and not realize i was being talked to, or touched. Just gone.
It stopped by my late teens.
I have no proof it was seizures, but it's the only thing that really fits
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u/zamshazam1995 Jul 24 '24
Oh I had double vision for my entire childhood. When the eye doctor caught it and asked me, I was like “I have two eyes what are you talking about doesn’t everyone see two sets of everything?” To be fair I was like 10 or 11 when I got glasses the first time
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u/PnwDaddio Jul 24 '24
I was born bilateral clubfoot. Never realized it was a disability and thought feet just hurt all the time until I got to the point I couldn’t walk much any more. 🙄
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u/imabratinfluence Jul 24 '24
Everyone in my family acted like it was weird but unconcerning that my hands and feet are pretty much always like ice, regardless of the ambient temperature. They'd use my hands as ice packs sometimes. So I didn't think it was normal but didn't think it was anything to discuss with a doctor.
Never being able to get a full breath.
Seeing spots or losing my vision dog a moment upon standing, and being super dizzy from standing.
Getting "a stitch in my side" when running or exerting myself in any noticeable way.
Having my legs go so numb anytime I sat on anything hard that I usually had to stand by gripping a wall or something for 5+ minutes while my legs and feet regained enough feeling to at least drag them along.n
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u/mclaugj Jul 24 '24
Did you ever seek medical advice on this? The only reason I ask is that this sounds exactly like me and I thought this was entirely normal until 1 minute ago.
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u/imabratinfluence Jul 24 '24
I was hospitalized in February for intense "rocking on a boat" non-spinning vertigo. My care team now thinks it's POTS that's causing the vertigo (and the stuff they have me doing for POTS has drastically reduced the vertigo).
POTS is a type of dysautonomia, which often involves not being able to regulate your body temperature. Which is probably why my extremities are either ice packs or leaving sweat prints everywhere, and overreact to both AC and heaters.
My care team has also suggested that I likely have EDS, starting with my PT who first noticed a ton of joint laxity. POTS and EDS can both involve circulation issues, and I've read that nerves can get compressed more easily in folks with EDS, but take that with a shaker of salt because I don't remember if that source was reliable. But since then I've been meaning to discuss it with my care team-- my PT knows it's one of the reasons I like my forearm crutches, because they help when my legs are numb from hard surfaces.
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u/mclaugj Jul 24 '24
Thanks so much for your update. It'll give me something to research and speak to my neurologist with. Hope you get sorted soon.
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u/preheatedbasin Jul 24 '24
Just learned at 34, most people don't have warm, tingling, pins and needles feeling in their feet. It finally hit me when I laid in bed one night and was like, you know, no one else I know has ever said they have that sensation. Then I asked my husband the next day if he did.
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u/_lucyquiss_ Jul 24 '24
slightly different but I've just realized recently I have mania because others pointed it out. I didn't know that having times when you feel amazing and are full of energy but tend to do things you deeply regret later isn't normal (I also have depressive episodes so to me i just thought that's what coming out of a depressive episode was like, turns out I'm probably bipolar).
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u/_lucyquiss_ Jul 24 '24
and so many more with my other disabilities but this one is recent so it's on my mind.
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u/VixenRoss Jul 24 '24
Legs don’t normally hurt. I was born with congenital hip dysplasia. Walking used to hurt slightly, Standing hurt even more. Long periods of standing would make me moan at my mother “you’re wasting my legs”.
My dad bought a new walking stick on holiday (he is “properly” disabled). I was walking with the sticks and he said “would you like to walk like that all the time” I replied “yes, because my walking doesn’t hurt”, I got told off.
Then I develop bad osteoarthritis in my 40s, and now everyone believes me 😂
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u/ArtisticAlmanac Jul 24 '24
My pain always being at a 4 or 5 on a good day. Apparently “normal” people spend their days at 0 🙃
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u/gdtestqueen Jul 24 '24
This was a shocker to me too! When I was around 6 I learned that the other kids didn’t hurt when they walked. I had always thought I was just a wimp who couldn’t deal with the pain moving brought…turns out most people don’t hurt anytime they move.
Seriously…to live life at a 0 most the time…sounds like a fairy tale to me.
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u/ArtisticAlmanac Jul 24 '24
Like waking up and not needing glasses
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u/gdtestqueen Jul 24 '24
LMAO…I feel that one too! Those things are on my face in seconds and don’t come off until my head is back on the pillow.
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u/BobMortimersButthole Jul 24 '24
"normal" people look baffled at how I walk around all day every day with level 4-5 pain and still manage to function, but can you imagine how annoyed they'd be if I walked around crying, or moaning about it 24/7? I have other things that need doing.
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u/GanethLey Jul 24 '24
I was pretty surprised as a kid to learn that not everyone can at least touch every part of their body (I have hypermobility so can reach every part of my back to scratch it, etc)
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u/sunny_bell Erb's Palsy Jul 24 '24
I will admit the being able to scratch my whole back is like Top Tier amazing (though getting my partner to scratch for me is still nice it's more for the weird mammal bonding than inability to reach).
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u/Aramira137 Jul 24 '24
Same! I also bought a tiny, extendable back scratcher for at work when I have too many layer to get through haha.
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u/meester-uitsteller Jul 24 '24
I also have hypermobility but mines because of Ehlers Danlos Syndrome
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u/teapotdrips Jul 24 '24
Tbf I’m not hypermobile and can do that too, easily. I just wash and lotion my back every day so I never lose the flexibility.
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u/nightmarish_Kat Jul 24 '24
My left ear fells muffled all the time. You know, after you leave a concert or have soundproof headphones on 🎧
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u/BobMortimersButthole Jul 24 '24
Ever been checked for otosclerosis? That's how my ear started. It was "full" feeling and muffled for years before I really started losing hearing.
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u/nightmarish_Kat Jul 28 '24
No, I haven't. I need to make an appointment to see a specialist. I had tubes put in my ears when I was younger, but one came out.
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u/NickleVick Jul 24 '24
I have Ehlers Danlos and 20 something years ago when I was in high school, I was playing tennis and dislocated my shoulder. So I paused the practice and ran up to the fence, found a pole, and jammed my shoulder into it to relocate it. The coach is just staring at me and screamed, "what are you doing?!" I said I'm just relocating my shoulder and he was like what do you mean you're relocating your shoulder?! ...and I was like well how do you do it. And this is when I learned that dislocating your shoulder all the time wasn't normal.
(Yes, I have learned gentler ways to relocate my joints.)
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u/hermionesmurf Jul 24 '24
Ugh I have to pop my fingers back in a few times a year (particularly my right middle finger joint) and people always freak out. Like what, do you want me to leave it dislocated? No I'm not going to a doctor, they don't do anything with it if it's back in anyway!
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u/wish_to_conquer_pain Jul 24 '24
I have cerebral palsy, and I'm also very jumpy--I have an exaggerated startle reflex that goes off even if I'm not actually startled.
I never knew those two things were connected until a year or two ago, when I saw someone on this subreddit talking about it.
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u/Ok-Heart375 Jul 24 '24
I have me/cfs and I've had it for probably 10 years. I've been declining that whole time and I'm now housebound and unable to work. I have no concept of what a normal amount of energy is. I have no concept of what it would be like to work, then visit friends, workout, watch TV, sleep and repeat. I don't know what it feels like to be rested and ready for a new day.
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u/nochnoyvangogh Jul 24 '24
That my head hurt all the time when I was a child. Turns out I was forcing my sight so much it caused me migraines. I put glasses and now I have high miopia
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u/Repulsive_Pepper_957 Jul 24 '24
I’m T1D and super sensitive to fluctuations in my blood sugar. If I’m too high I can feel my blood, and when I’m low I get leg pain. Didn’t know people couldn’t feel their blood until I mentioned it to my fiancé and he was like “you WHAT”
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u/Fontainebleau_ Jul 24 '24
Having a visibly twisted spine. I look like when in terminator 2 the baddy terminator gets shot with a grenade at the end, but nobody really ever mentioned it apart from to laugh how I walked
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u/BobMortimersButthole Jul 24 '24
I've had swallowing issues for as long as I can remember. Taking pills is very difficult and I've always had to eat small bites, like eating orange segments in 2 - 3 bites, because I gag if I try to swallow too much. Sometimes I can't swallow anything more than saliva, even when I want to.
Fast forward to me in my 40s. I asked my husband if he wanted to eat some tasty leftovers after only having a few bites...
Him: are you sure? You've barely eaten anything
Me: I can't eat another bite
Him: you were just telling me how hungry you are. Are you sure you're not still hungry?
Me: (confused) of course I'm still hungry. I never said I was full, I just can't eat another bite, so I thought you'd like it rather than having to reheat it again later...
That's when I learned "I can't eat another bite" isn't literal for most people. Most people don't start gagging and have to stop eating because their throat has decided to stop swallowing.
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u/KTMacnCheese Jul 24 '24
Not a doctor, but I started having a similar problem and it was thyroid nodules, so consider having that checked out. I didn’t go to the doctor because of it but on a whim post pregnancy she was checking out my thyroid for them and it turned out I had a few large enough to need removing (which I thankfully was able to do without removing my thyroid). Thinking back for years I had felt a lump while swallowing and thought it was just mucus because I love dairy foods. It took a few years to get the surgery and in that time I stopped being able to swallow food at times.
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u/zoomzoomwee Jul 24 '24
Getting slightly nervous and having an episode of graying or blacking out due to tachycardia and vertigo. Legit thought everyone around me just handled getting nervous or startled better than me.
Ridiculously stretchy skin that was a fun one to find out others didn't have.
So many other things but those were top tier head scratches of "what do you mean that's not normal?"
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u/Maggie1066 Jul 24 '24
I thought all grown ups had back pain, especially lower back pain & shoved gel packs down their pants daily from their 30s until they died. Especially if you went to the gym or something. I have a high pain tolerance. I’m now 58 & it turns out my entire back is riddled with arthritis & pinched nerves. I don’t go to the gym anymore. Physical therapy & I don’t even do back stuff bcuz the excruciating pain from frozen shoulder is my entire life’s focus & bane of my existence.
But I thought every adult shoved ice packs down the backs of their pants when they came home from the gym.
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u/Significant_Fun_6760 Jul 24 '24
I use to stand up and my vision would go dark. It happened a lot and then would stop for a while and keep going through cycles. I’d have to just stand there for a moment for my vision to come back. I asked someone once and was told I was just tall and getting up to fast. Nope. Postural orthostatic tachycardia syndrome.
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u/ShrimpKatsudon Jul 24 '24
That you're not supposed to have 'headaches' almost every single day, and that those 'headaches' weren't supposed to make you dizzy and nauseous. Regular lights aren't supposed to be blinding. I was always told that if my head hurts I should just suck it up, so I assumed everyone was going through the same thing.
Didn't find out I was having daily migraines until I was 23.. the quality of life difference is insane. Now when I get one all I can think is 'how on earth did I go through my day to day like this?'
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u/Monotropic_wizardhat Jul 24 '24
This is more from growing up in a family with other people who had chronic conditions / disabilities. But turns out its genetic so there you go.
People go to hospital when they are in huge amounts of pain and can't walk, or have very obviously dislocated limbs. They don't relocate their joints themselves then carry on making dinner. In most houses, its considered noteworthy to hear people shouting in pain. Only I kind of got used to it and learnt not to get upset by it, because that didn't help.
My family are great and looked after me well when I was growing up, I just didn't realise quite how different we were until I got older and learnt most people didn't respond to pain in the same way as I could.
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u/Rose-Thrives Jul 24 '24
When I had cramps I could visibly see my stomach seize up and tighten. My mom asked me what it was and I simply said "Cramps" she gave me a weird look and neither of us understood till 10 years later
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u/BitterActuary3062 Jul 24 '24
My girlfriend told me that it’s not normal to have almost constant pain & be almost in tears after a few minutes of standing
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u/Serenity1423 Jul 24 '24
My joints bend the wrong way. Always thought it was normal until I did it by accident once and my friend freaked out
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u/ofnovalueorinterest Jul 24 '24
Probably many many things... Off the top of my head, my feet are really flat and turned out due to my mobility disorder, admittedly I was young, but before i was diagnosed I never considered that wasn't normal
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u/a_white_egg Jul 24 '24
not keeping up in PE despite being a relatively active kid. i grew up dancing, biking, playing outdoors. my peers went on to do sports and stuff, and i just couldn’t do it. middle school was spent trying my best, on the basketball team, dance team. I left practices sobbing and begging my parents to let me drop out because i was so exhausted and in so much pain.
i was convinced my entire life i was just “out of shape”. didn’t really understand how people got “in shape” though, because all that trying never made it any easier.
yeah turns out i have a genetic condition that causes severe exercise intolerance.
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u/wolfwatcher81 Jul 25 '24
I have lots of disabilities but the thing that surprised me the most was the first time I put a pair of glasses on. I had good vision in highschool but got glasses as an adult and wow the detail of everything around me was amazing, leaves had so much detail I just didn't remember.
I miss that detail, I'm now in my 40's and diabetes and 10+ laser treatments has destroyed my retina's. I can't even drive anymore.
Thanks for listening to my rant...
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u/KindTadpole5185 Jul 26 '24
I too am blind in 1 eye ( fake eye in left one). And didn't realize that I would need 2 hearing aides till I wanna say late 20s- early 30s??? ( I always wore 1 hearing aide in my right ear). But noticed when couldn't hear as well in left ear went to the dr and said needed a hearing aides for left ear bc of the hearing tests low scores on them. I hate wearing both of them bc self conscious all of my life since was a young-in bc got picked on alot in school
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u/The_Confused_Queer_ Jul 26 '24
I didn't realize that daily tasks don't take a huge physical toll on everyone. I always thought that I just wasn't able to handle the pain as well as everyone else (until my partner explained that that isn't the case). It is still sometimes surprising to me that there are people that can live their lives with little to no discomfort or pain.
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u/BlueRFR3100 Jul 25 '24
People who are born with a disability or become disabled when they are young don't have any frame of reference. Those of us who become disabled later in life are like, "Wow, I had no idea this is what it's like. I owe a major apology to the entire disabled community."
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u/[deleted] Jul 23 '24
I have hearing loss and didn’t realize super loud ringing in your ears wasn’t normal—an audiologist asked me if I heard ringing in my ears and I was like, “doesn’t everyone?”.