Chronic Illness - Tumblr Posts
Believe it or not, I didn't know chronic migraines were considered or could be considered a disability until today. I've watched my mum have the most horrendous, disabling migraines my whole life, yet it never occurred to me to think of migraines as anything serious. They were always just treated like a particularly horrible headache in my house.
I'm researching them now as I've recently realized that part of my inability to sit up is migraine related, and it's kind of blowing my mind.
I'd love to know how many other people are/were in the same boat as me.
I had to talk to my spouse about feeling bad abt being disabled but not getting benefits for me, and they hit me with: "You're still disabled, whether you get government benefits or not."
despite the chronic pains, chronic physical & mental illnesses, i still feel like a fake because I dont have any paper saying "YUP UR DISABLED. HERES MONEY"
Just Chronic Fatigue Things
feeling so tired you might pass out
never feeling like you’ve slept - ever
forgetting what you’re going to say 100 times a day
being too tired to sleep
sleeping for 4/8/12 hours and feeling just as tired
needing a nap after being away for 3 hours
muscle aches
waking up feeling like you have the flu
waking up feeling like you’ve been hit by a freight train
your legs not wanting to work after walking up a small hill or the stairs
nausea
sensory overload, e.g. loud cafés, pubs or anywhere making you feel dizzy
anxiety
being too tired to remember the symptoms of your own illness
When I say “school should be disability accessible”, I don’t just mean we need handicap rails and EAs. Kids should be able to miss a day without failing out of school. You shouldn’t be dismissed from clubs because your attendance record is “spotty” (true story). I once missed an entire week of school because of a terrible, unending migraine. I was expected to keep up with my studies despite the blinding pain that came with working on my computer. When I heard my teachers say that you couldn’t miss exams, I asked what I would have to do to be excused from them. Their response? “Either get a doctor’s note an hour before the exam or death of an immediate family member.”
I cannot express how rigid this expectation was. First of all, with my condition, I wouldn’t have enough warning about my sickness to go to the doctor and request a note. For many people, this is exceptionally difficult, especially with the current shortage of medical professionals. Next, it ignores the fact that my schedule may not line with theirs because of my medical needs. Once, I had to visit a hospital a province away (which I was on the waiting list of for over a year) on the same day as an exam. I begged my mother not to take me because I was so nervous that I would be marked as an automatic fail. I was lucky enough to make it work, but that’s only because of my spectacular support system consisting of family members and wonderful doctors.
Disabilities aren’t always about needing a bus that can accommodate wheelchairs. It’s already difficult enough for many of us to maintain school attendance without the harsh punishments involved for skipping a day. We need to be able to miss school without being punished. Only than can you claim that the school is “accessible”
Having spoons to do stupid shit but zero to engage socially with the circle of gremlins I have as friends is about the dumbest way today has decided to allocate our limited resources
Hey! If you want to learn about my journey with having a bleeding disorder you can follow my new blog!/nf
HELL YEAH
DISABILITY PRIDE MONTH!!!!!
This is my first disability pride month with a diagnosis!
"Pride month is over"
WRONG! Your pride month is over! Me and all the other disabled queers are having pride month two: disability edition
I broke two ribs and didn't know for a few weeks because I thought I was just sore or having a gallbladder attack. I developed costicondritis (spelling is off, chest wall swelling) that made me think I was having heart issues and the ER trip showed that I was in the process of healing two fractured ribs (3 cracks total!).
Heightened pain tolerance and being used to being sick is crazy.
An issue with a lot of whump and injury writing guides is that they also tend to assume that the characters are always able-bodied but like.
It's been proven over and over again that people with chronic pain have higher tolerances for everyday pain, including things that would leave other people crying or screaming. When you experience dizziness, body aches, chills, etc as just your baseline, those things aren't a good indicator that you're injured or bleeding. Even mild concussions are very hard to notice when you have chronic headaches/migraines (speaking from experience).
And those are just the experiences of general chronic pain, not even more severe and debilitating conditions that can completely warp someone's relationship to their body and their brain's way of processing pain.
Being chronically ill is fun because my right leg is numb and the right side of my lower back and hip are in a huge amount of pain and I don't know if I dislocated something, if I aggravated the spinal cord injury I had when I was a kid, if I aggravated the fracture in my tail bone that I got in Spring/Summer of '22, if it's nerve pain from my Lyme disease and related palsy, or something completely new!
Also this is a fun time to not know where my fucking cane is! Usually it's in the car, but our car was totaled in August and I don't know if I rescued my cane from it after the crash.
Fuck my life, I can't fucking walk today.
Being referred to the ER I guess because the doctor thinks I dislocated something deep in my hip and I might need surgery to fix it.
Hahaha I love life.
Being chronically ill is fun because my right leg is numb and the right side of my lower back and hip are in a huge amount of pain and I don't know if I dislocated something, if I aggravated the spinal cord injury I had when I was a kid, if I aggravated the fracture in my tail bone that I got in Spring/Summer of '22, if it's nerve pain from my Lyme disease and related palsy, or something completely new!
Also this is a fun time to not know where my fucking cane is! Usually it's in the car, but our car was totaled in August and I don't know if I rescued my cane from it after the crash.
Fuck my life, I can't fucking walk today.
Negotiated to outpatient X-ray and a follow up plus referral to rheumatology. They gave me Prednisone and Flexeril, so I can kinda get around now, but not really.
This is not fun
Being chronically ill is fun because my right leg is numb and the right side of my lower back and hip are in a huge amount of pain and I don't know if I dislocated something, if I aggravated the spinal cord injury I had when I was a kid, if I aggravated the fracture in my tail bone that I got in Spring/Summer of '22, if it's nerve pain from my Lyme disease and related palsy, or something completely new!
Also this is a fun time to not know where my fucking cane is! Usually it's in the car, but our car was totaled in August and I don't know if I rescued my cane from it after the crash.
Fuck my life, I can't fucking walk today.
my stomach did the thing 🤭 (projectile vomiting)
any wise words, advice or insight?
so i've been decently confident that i have POTS , especially because i started to feel this way about 8-ish years ago after i was bedridden sick.
^ (but for almost as long as i can remember, i never liked standing up for long times, and felt faint often, so i really don't know for sure) more context below cut
even so, i don't move around often, aside from when i'm at work 3x a week (5-6hrs each) or going out with friends. i usually stay in my room crumbled up in my desk chaid or in bed. i also have arfid and so i don't have the best eating habits too
because of this i'm not sure if i an physically built wrong or if the fainting, weak knees & arms, and dizziness (+other POTs-like symptoms) are just a result of my habits? i used to be fairly active in elementary school + middle school, but cannot remember if that ever helped me. i know that even when i was active, by ribs would feel broken with cramps and bruises. so i really can't tell if i was just living like this or only now am feeling it.
my doctors aren't listening too much, but that seems normal for my healthcare system/hj
i find that if i can sit and eat every once and a while during my time i do go out, i can suffice with only a little bit of dizziness, but i still fear leaving the house without any secure way of breaks or snacks, so i'm using the world's most painful hand-me-down wheelchair and i don't even know if i should get a new one because i don't feel justified since i've 'lived long enough' like this without one. (even though, i have to admit, i only stopped leaving the house because of my symptoms over a decade ago)
this obviously doesn't apply to every disabled person but one of the things you don't really hear about for being disabled or chronically ill is the boredom. being stuck in bed and like. not having the ability to do anything meaningfully intensive with your hands, not being able to sit up, not having the concentration to read or watch things (from pain or brain fog or something else) and just kinda. lingering around online and hoping for something to happen or someone to talk to even if you have nothing good to say bc nothing has been going on for like the last day, week, month anyway
Person who wants to do stuff trapped in a body that needs to lie down
Wait what's a buildings fire evacuation plan if you aren't supposed to use the elevator to get down
“If you have time to be on social media, you also have time for…” “If you have time to watch Netflix, you also have time for…” Yeah, but do I have the energy for it? Do I have the emotional and mental capacity for it? Am I pain-free enough for it? Can I focus on it? Can I do it without leaving my bed? Can I safely do it without risk of (physically or emotionally) injuring myself by pushing past my boundaries?
I never truly knew the meaning of friendship until I became chronically ill and disabled. When my health declined I had people leaving left and right because I couldn’t keep up with other teenagers. I stopped having people check on me, I stopped getting invited to stuff, stopped being included, until I just got left behind. Now as an adult I found friends who check up on me, make sure whatever we do is accessible to me, always making me feel included, they are my support system.
Check up on your chronically ill and disabled friends, keep including them in stuff even if they have to end up canceling it. Being excluded for something you have no control over is horrible and no one should go through that.