Chronically Ill Babe

| Disability blog | They/Them |

[burntdownhayloft]

I have a week to my appointment, how do I go about telling my PCP I think I have MECFS without sounding like I’m WebMD-ing myself…

[thebibliosphere]

I’ve ranted about this before, but if I hear one more person tell me as a disabled, chronically ill person that I “need reset my vagus nerve” and they suggest a magnesium bath soak and what is essentially chamomile tea mixed with a laxative to fix it, I refuse to be held responsible for my actions.

[thebibliosphere]

“Your vagus nerve has stopped working,” worstie, that’s called death.

[thebibliosphere]

I was talking about the intensive physical therapy I do to help with my dysautonomia, which is listed in my medical file as autonomic failure, meaning my autonomic nervous system does not function correctly and many parts of my body that should be automatically regulated are not.

And I got hit with, “oh, I take a bath magnesium when that happens to me—“

And I got so irritated my heart hit 160bpm and I almost syncoped. So y’know, a dysregulated nervous system response lol

[toomanyacronyms]

I'm not even severe, maybe mild-moderate or moderate based on what sends me into PEM. And all that crosses my mind is my sister who says she has all my same symptoms.

But here's the kicker:

She works full-time. Sue leaves the house every day. She rarely has days she is sick; they're once in a blue moon. She doesn't need a mobility aid.

I mention once how a single three-hour shift at my job can wipe me out for two or three days. Her response, "I get that too." If you truly did, you would not leave your room because your husband is a built-in caregiver. If you truly felt as awful as I do from going grocery shopping, you would send your husband while you stay home.

That's the only symptom she claims to have.

Sleep issues? I get truly unrefreshing sleep. I have gone over two decades with horrible sleep. My body is literally thinning my hair because it doesn't have the energy. I used a cpap machine for a month to see if it was sleep apnea. (It wasn't and I have tests to prove it.) My sister finally gets medicated for anxiety. Her sleep quality skyrockets. The migraine medication I'm on is said to help with sleep. Not mine! My sister chooses to skip appointments because she wants to sleep in on days she took off for said appointments. I wake up and I have to trigger adrenaline to get out of bed and spent the whole morning shaking while getting medication and breakfast. I take eleven pills each morning and my sister sometimes remembers to take her two.

We are not the same.

There's something about MECFS that make people want to have it. I think it'd because they think it's just being tired. It's so much more than being tired. The first symptom of fatigue is crushing and soul-comsuming. Then add on the post-exertional malaise and the pain and the autonomic dysfunction. This condition is hell and my brain has to remind me daily that I have a sister who insinuated at one point that she wants this.

[caseyscraftycorner]

watching my husband get diagnosed with and treated for sleep apnea over the last year was not the thing that radicalized me re: weight and healthcare but my goodness it has solidified my stances.

sleep apnea is more common in people who are fat.

society decided for some reason that this meant that being fat causes sleep apnea. its often difficult to get referrals for sleep apnea treatment if you are fat, because some PCPs will tell you try losing weight first.

turns out!! having untreated sleep apnea causes weight gain in a not-insignificant number of people. it also makes it fucking impossible for many people to lose weight.

my husband worked out the same amount before he got a cpap as he does now. there have been no major diet changes either. yet he has been losing weight -- and gaining muscle tone -- consistently since he started using a cpap in january.

also, his blood pressure -- which was high, which docs blamed on his weight/diet -- went down significantly within one month of starting cpap treatment, before his weight changed significantly.

ANYWAYS. this is getting long. two final thoughts.

- I Want To Strangle Medical Fatphobia With My Bare Fucking Hands

- if you are exhausted constantly for "no reason", and especially if you snore, you should probably ask your doctor about getting tested for sleep apnea. it is extremely common -- estimates are around 1 in 10 people -- and is also wildly under-diagnosed. like, some estimates suggest that 80% of people with moderate-severe sleep apnea are undiagnosed.

[antiadvil]

Happy migraine and headache awareness month. This may seem like a minor terminology nitpick, but it’s a serious misconception about migraine: nausea is an actual migraine symptom, not a thing that happens because of the headache. When people with migraine experience nausea during attacks, it’s not because the pain is so bad (the idea that migraine is always excruciatingly painful is also a myth), it’s because migraine causes a lot of symptoms that aren’t pain, including nausea.

This goes for other symptoms as well: although pain can definitely contribute to people’s experiences of these symptoms, fatigue and brain fog are actual migraine symptoms, not just pain symptoms.

This is also your friendly PSA that nausea is not a normal tension headache symptom, if you frequently get nauseous with your headaches, you almost certainly have migraine.

[billy-xoxo]

Truly I hate the fact that if you’ve got memory problems people just assume you’re dumb. Like sure it’s great to be able to list off perfectly memorised bullet points at a moment’s notice, but I don’t really think that’s an adequate way of assessing that person’s learning. That doesn’t tell me you’re knowledgeable on the subject, it tells me you’re really good at dot points & flash cards. Can you define them in your own words? You can remember them but do you understand them?

[smoov-criminal]

pedestrians don't seem to realize how exhausting using a wheelchair is, both manual and powered. i had to wheel around a hospital today with several ramps i had to go up and down multiple times, and even with my smoov i ended up with shoulder and chest pain and deep exhaustion.

people look at wheelchair users and think "well you're sitting down all the time that doesn't take effort" no actually it does. pushing a manual chair takes a lot of fucking effort, especially without a power assist. repetitive stress injuries are a huge problem manual chair users encounter all the time. going up hills and ramps is so deeply fatiguing.

this doesn't just apply to manual chair users btw. power chair usage can also be really exhausting, especially for people with complex seating needs. going over bumps and cracks can trigger many symptoms such as spasticity, pressure sores are common, even just sitting upright can be exhausting for many people.

basically don't assume using a wheelchair takes 0 effort, it really really does. getting to "sit down all the time" doesn't mean it's easy.

[smoov-criminal]

im gonna need you able bodied motherfuckers to stop comparing the extreme pain and exhaustion that comes with using a manual chair to being in a car for 8 hours. not even remotely the same thing.

[talkethto-thehandeth]

Telling people with ME to exercise is so dangerous and I am not kidding when I say you need to get off your high horse of being a better disabled person all because you still are physically able to exercise. Do not give out advice that can literally kill people, especially with severe-very severe ME. And making videos shouting “if you don’t exercise, and you “let yourself lay in bed all day” and decondition you’re never going to get better!!!” all in the same fucking breath what is WRONG with you? Literally what is wrong with these people who have a taste of being sick and just think “ah, surely this one thing that has not cured anyone with ME/CFS ever is necessary and fundamental to YOU succeeding!” wtf??

“I have ME/CFS, the thing that helps me more than anything is exercise. I do get PEM, but I plan for it. If I go run(?!) or exercise, then I come home and shower then lay down in my room for about 30 minutes with the light off” is one of the most ridiculous things I’ve heard about ME and that’s saying something. PEM is not “after a run and a shower, I lay down for 30 minutes in the dark and I’m better” fuck out of here

No person with ME just “lets themselves” be stuck in bed. I “let myself be stuck in bed” so I definitely deserved the bed sores I got when I was too weak to be able to move my body to switch positions.

Also being bedbound isn’t for when you’re sick with a common cold or stomach flu. You can still get out of bed to go die in the bathroom and come back and repeat. It is not the same. And it certainly isn’t a choice. You want to be us so badly and yet you hate everything to do with us. It’s fucking weird.

what is PEM?

what is PEM?

[toomanyacronyms]

Me: wants to reblog a post

The post's tags: absolutely DO NOT pass the vibe check

So I'm going to make my own post.

ME is awful but shout-out to everyone staying alive and making their lives as full as possible regardless of severity.

[five-thousand-loaves-of-bread]

wish people remember that like. forget to eat, will sudden remember not eat after whole day, not liking food, struggling w chores like laundry n dishes n house cleaning n grocery shopping hating doing it put it off doing it, finding those supposedly “simple” stuff harder than many so called “advanced / skilled / hard / complicated” stuff… be pretty common lower support needs autistic & adhd experience actually n lots people struggle with that actually

[five-thousand-loaves-of-bread]

thoughts abt this

1. see this so many times, a lower support needs autistic / adhd person who expected live normal among Ableds talk about struggle w day to day n be so exhausted every day n so many (so many!!!!) similar lower support needs autistic / adhd ppl in notes n comments etc talk abt be similar & feel so broken n failure n alone etc bc no one talk abt it. honestly so heartbreaking n frustrating for me knowing it common LrSN experience

it so common!! so many people struggle with it! but despite be so common, ppl not really talk about it abled ppl don’t n many LrSN ppl also don’t bc embarrassed / don’t know to / been shut down n shamed before / don’t realize not everyone like this. no one know how common of experience it be. despite be so common no one rly have good easily accessible solution to it

2.

n bc am higher support needs person n this be higher support needs blog inevitably going talk about how this impact higher support needs people bc it absolutely does

bc ppl not talk abt this experience n so not realize how common this be among LrSN ppl, AND ppl talk even less abt more severely disabled people & ppl w mid n high support needs, the General Nondisabled World (which many LrSN ppl made to exist in) kick us to our own separate lil contained hidden place to point no one realize we exist or should be put in your world view. so some LrSN (autistic/adhd) ppl inevitably think they higher support needs than they actually be

ppl see struggle w these things n auto label it / themselves who struggle / other ppl as mid or often even high support needs,

bc compare to General Nondisabled World it feel very big n the distress feel very big n the struggle feel very big n it is (!), it be higher than what General Nondisabled World demand them to be. but bc that General Nondisabled World on purpose hide the rest of us who cannot even pretend to blend into n fake it until we make it there no comparison to the whole disability spectrum.

so us mid & high support needs ppl get pushed out even further, where words for us no longer recognizable for us, we forgotten even further.

try seek community using our own terms n words n experiences n descriptions n quick shorthands bc don’t want to / too invasive to / too long to / shouldn’t have to list out every single thing we need support on n be essentially told hi now you too much too high too difficult for even high support needs

low support need get push to mid support needs, mid support needs to adapt get push to high support needs, n high support needs people left no where to go once again

it not about compare to nondisabled ppl bc to them we all too much. it about overall disabled people

n it not just abt you yourself. it about wider it about all

have heard many low support needs ppl come to me n say they been listening to me & other ppl w high support needs & advocating with us centering us in their advocacy n believe we deserve support n through that. they recognize & get more okay n comfy with admit & accommodate their own support needs n deserve support too

support the most marginalized n entire community will feel good effect it trickle up

so

tldr like

low support needs not mean no support needs, unfortunately low support needs not mean no struggle it can often mean immense struggle just like mid n high support needs ppl. struggle with clean house laundry cooking shopping n forget to eat until suddenly it end of day n can’t keep job n constant in burn out all the time n severe depression anxiety ocd etc all be really really common lower support needs autistic / adhd experience in current world unfortunately n deserve more recognition n support n be talk abt more than it be getting right now but it cant just be solely from high support needs people.

n advocate abt mid n high support needs ppl not take away support n recognition from low support needs ppl it increases it

[affectionatealbatross]

physically fatigued but mentally clear will kill me one day

[talkethto-thehandeth]

you guys are getting the term housebound a little confused in my notes and it’s making my eye twitch as someone who is housebound and has been both housebound and bedbound.

housebound doesn’t mean “cannot leave the house under any circumstances”, but in fact means “can leave the house, on the requirement of needing assistance from either a mobility aid to avoid worsening symptoms, or with the help of another person, and leaving is going to take immense effort, exhaust me, and take me a long time recover from”.

amedisys, 2025

[talkethto-thehandeth]

Happy disability pride month to severely disabled people who are housebound/bedbound

happy disability pride month to severely disabled people who don’t have access to proper treatment or medical equipment, and are stuck without care that would ease symptoms or make their life easier

happy disability pride month to severely disabled people who won’t be getting better, and who will be getting worse, or who will be dying due to their conditions

happy disability pride month to severely disabled people with photosensitivity who can’t look at screens for long, and feel even more isolated by not being able to interact with much the disability community, even online

happy disability pride month to severely disabled people who aren’t happy to be severely disabled, but are happy to be alive

[normal-with-adhd-is-a-joke]

Conservative beauty standards are back with a vengeance which means it's especially important to go out this summer with bellies out and bodies unshaved. Also be unapologetically disabled with mobility aids and wearable medical devices and stim toys and ear defenders and all that stuff. You need it. People need to see it. Everyone needs to be reminded that life is unquestioningly more enjoyable when you're not living inside an arbitrary set of rules created by people who are offended by all the wrong things.

[imightbes1ck]

Are there any specific doctors to go to for MECFS. My current doctor has admitted that she isn’t really qualified to figure out what’s wrong with me so where should I look.

[toomanyacronyms]

Sometimes I feel like a failure because I'm not working towards being cured or getting better.

But then I remember that I've been sick for over two decades and spent that entire time in rolling PEM and a worsening baseline.

In short, it's totally fine for my "recovery" to look a hell of a lot like finding stability.

[chronicallyqueeer]

idk what disabled person needs to hear this, but i used a mobility aid in public for the first time last week and literally nobody cared idk why i was convinced people were gonna stare at me or be weird about a young person walking with a cane but literally nobody gave a fuck