Chronically Couchbound

I’m chronically ill and homeless, so I spend a lot of time on couches. Funny, right?

[so-over-ableism]

Hiya! In was wondering if any of your followers have Joint hypermobility syndrome/hypermobility spectrum disorder. I can't really find any blogs related to hsd. Only EDS but that's not the same.

well you’re in luck because I have hypermobility, and i’m very sure that many of my followers do too 

(mine has been pretty bad recently bc my elbows and knees keep extending too far and it like pulls the muscles and they have to kinda click back into place and it sucksssss)

so yah babes if you have hypermobility let this lovely person know!

[impotsiblelife]

Accepting your limitations when you have a chronic illness or disability doesn’t mean you’re lazy or pessimistic. It’s more than ok to acknowledge and respect the fact that there are things you just can’t do. Don’t listen to anyone who tries to put you down or make you feel guilty for saying “no” when you aren’t able to do something. 

[jinxy93]

The worst part of a chronic illness is having the desire to be productive, but your body simply won’t. do. the. thing. 

[fortunesque]

Activated Charcoal = ineffective meds

Friendly reminder that activated charcoal, even when put into food as a black colorant, binds to medication and can make it ineffective. Yes, this includes birth control! I thought I’d put this PSA out there since people are making spooky “black” versions of normal foods.

[livebloggingmydescentintomadness]

To elaborate: activated charcoal is “detoxing” in the sense that if you have consumed a poisonous substance or overdosed, a hospital may give you charcoal in an attempt to render the substance inert.

It is NOT “detoxing” in the sense that you should take it on a regular basis to remove ordinary ‘toxins’ from your body, like you might take milk thistle or dandelion. It does you no good whatsoever unless you have recently consumed something harmful and charcoal could bind to it and thereby turn it useless.

Do not eat, drink, or take charcoal regularly, especially if you’re on medication.

[sadhoc]

laws about minimum wage should apply to disabled people

laws about minimum wage should apply to incarcerated people 

everyone deserves a fair living wage for their labor

[disableism]

Spoonie Problems: When you have so many different doctors in the same building that you can’t remember which doctor is on what floor or which office for what doctor or basically where you’re going, ever. Thank goodness for information desks.

[low-on-spell-slots]

Low on Salt, Low on Spell Slots #2

Don’t you just hate it when normal activities are impeded by your condition? I was able to leave the store without any problems after a short rest just sitting there for a while but it’s rather frustrating when you feel like you can’t do every-day tasks without problems. Stay safe out there, fellow spoonies!

[just-call-me-ella]

Hello Ella! I’m new here and I hope I’m not rude or anything but I have a friend of mine who is disabled and I wanna educate myself and I don’t act like an asshole and basically understand her and stuff. So can you give me a great guide and important stuff that I should know? Thank you so much for your time! Have a dope day 🌷

haihai, so a lot of this depends on what kind of disability your friend has, but I think I can boil it down.

1. Listen to, and believe your friend.

If they say “i cant do that”, believe them. Ask them if they’d like help, or if you can find an alternative. If they say “I can do that,” and dont need help - also believe them. Don’t force your help on them without asking just because you think they need help. You can ask if they want help, and then if they turn you down - listen. 

2. Understand that disability is not linear

I know this sounds odd, but depending on their disability, they may be able to do something one day that they were not able to do the day before. Similarly, they might not be able to do something today that they’ve been doing just fine recently and you’ve seen them do before. This, again, goes with the listening and believing them. If they say they can’t do something, even if you’ve seen them do it before, understand that disability is not the same every day for every person, and don’t say things like “but I saw you do it yesterday!” or etc. Just listen to them. 

3. Don’t touch or move them and/or their aids without permission.

I’m forever going to be angry that this has to be said, but it’s an unfortunate truth that it does. Many wheelchair users find strangers pushing them out of the way, or grabbing the handles on the wheelchair to move them or try to “help” them (and many times end up dumping the wheelchair user out of their chair and onto the ground in the process, sigh). Don’t move someones wheelchair - whether they’re in or out of it - unless they give you permission. Don’t move someones cane out of their reach without permission, even if they’re not currently using it. Or their walker. Or their oxygen. Or their hearing aids, or - literally anything - if it’s in the way, just ask them. “hey do you mind if I move this to the chair so I dont trip on it?” etc. And then listen.

4. Think about them and their needs while making plans

One of the most disheartening things with disability is when you get invited to go somewhere, only to find out that you cannot go because of accessibility issues. Especially when those issues are obvious and your friend doesn’t seem to care or even think of you. If they’re in a wheelchair, call and ask if the place you want to go to has any stairs, and a ramp if they do, before inviting your friend out. Ask about disabled bathrooms. Scout ahead if you need to. If your friend uses a cane, inviting them to that cool new pizza joint that you have to climb a staircase to eat at, isn’t going to work. If they have fatigue issues, a club with little to no seating isn’t an option. If they have dietary needs, make sure the restaurant you’re going to serves options for their needs (Gluten free/dairy free/vegan/etc). If the place you’re going to is busy and might not have parking close by, ask them if they’d like to be dropped off outside if you’re carpooling. 

Just think about their needs, and if you’re in doubt, ask them what they are! If you’re worried that you won’t be able to anticipate their needs, and you’re too shy to ask, but still want to hang out with them - ask them to pick a place to hang out! 

And finally - mistakes happen. If you do have plans to go somewhere and you both show up only to find out that your friend can’t get in the door, leave. Go somewhere they CAN go. Speak up for them if you’re with a group. “Hey! This isnt going to work, *name* can’t go inside, we need to find somewhere else to eat”. Your friend can speak for themselves, but it feels immeasurably better to have someone else have your back. Don’t continue your plans with the group if your friend can’t, because that’s excluding them to go on a long frustrating trek home, disappointed and probably a bit pissed. 

5. Lastly, be understanding.

Don’t shame them for not being able to come out with you all the time. Or for taking meds. Or needing to go to places that accommodate them. Or for things changing. Understand that they know their body much better than you or any doctor does, and respect their boundaries. Assume that everything they do, they do with the knowledge of how it might harm or benefit their body, and you don’t need to tell them to do or not do things. Just accept your friend where they’re at. 

[nocturnalvisionary]

Here’s to everyone with a progressive disability who is forced to watch their body slowly lose more movement and get worse. Here’s to everyone with a progressive disability who, every time you get hurt you cringe and fear because it means that body part probably won’t heal all the way and it just worsened your condition. Here’s to everyone with a progressive disability who has to constantly mourn your body and who you are are you lose your movement, your ability, as you see it get worse and you sit there trying to make your toes move, or your hand move and it just won’t happen and no one can really fully understand that mourning.

I go through it, I mourn with you, everyone with a progressive disability mourns with you, we are in this horribleness together.

[survivaltillacure]

You know your chronically ill when you can talk and relate with your grandparents about your aches and pains.

[ladyshinga]

“Yeah but am I hurting enough to take a painkiller?”

- everyone with chronic pain ever

[impotsiblelife]

Sometimes I feel like being tired all the time isn’t “that bad.” That I should be able to push through fatigue and get things done like everybody else. But then I remind myself that extreme tiredness and sleep deprivation are forms of torture. I once read a study that suggested that healthy people would have to go without sleep for 3 to 4 days to experience the kind of fatigue that chronically ill people feel. 

Chronic fatigue is real, disabling, and not just something to “push through” or “get over.” 

[sunflower-cane]

Okay so, im gonna give a bit more detail into why you shouldnt ask someone why theyre taking their bag to the restroom/call them out on it/corner them on it.

The obvious reason thats been talked about before is a person who has their period needs their bag w them to carry their tampons/pads/etc.

But also, especially in schools, there are disabled people who have things in their bags that they cant risk shosing to others, such as,

Incontinence products

Needles and medication that requires a syringe

Medication that must be taken orally

Things to help with anxiety

Extra clothes

Braces that need to be put on

Things for stimming

Others things that people dont need to know a kid has.

What im trying to say here is that you should never ask anyone why theyre taking their bag w them to a restroom, or anywhere for that matter. Because not only is it none of your fucking business, but it can only be a complete invasion of someones privacy and a complete invasion of someone’s /health/. Being disabled is hard enough, especially in school, but its so much worse when we teach kids rhat they dont deserve privacy and a whole classroom needs to know about their disabilities and illnesses.

[the-autistic-system]

Normalize:

Normalize disabled girls with hairy legs.

Normalize disabled girls with unwashed hair.

Normalize disabled girls with “bad” teeth.

Normalize disabled girls with hairy underarms.

Normalize disabled girls who sit weird in their chair.

Normalize disabled girls who are loud when feeling any emotion.

Normalize disabled girls who eat with their hands.

Nomalize disabled girls who can’t sit or stand up straight.

Normalize disabled girls and everything that comes with them.

Normalize disabled girls. Period.

[myrecoveryisworthit-deactivated]

Your disability/illness/disorder is NOT “an excuse”, it’s a reality. Having limitations does not make you lazy. You should never feel guilty because you have limitations.

[psychotic-psypport]

Fuck anyone who tries to make you feel ashamed of who you are. They don’t know jack shit about what you’ve survived, and you don’t owe them any explanation or apology. If you aren’t hurting anyone, you have nothing to be ashamed of. Be proud. You deserve it.

[sarahbeara113]

“You should try…”

“My sister’s friend’s cousin’s boyfriend had that and and __________ cured them”

“I heard _____ about your medical condition that I know absolutely nothing about and can’t even spell”