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crippledpunks · 2 days

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i wanna say fuck you to anyone who shame disabled, chronically ill & neurodivergent people, especially homebound folks, for "spending too much time on their phone/on the internet/etc." when it's the only (Somewhat) accessible way for them to experience the world. many people don't get to get out much even if they want to because of their disabilities. shaming someone for trying to connect with the world, make friends and engage with hobbies in ways that are accessible to them is beyond cruel and unnecessary

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thiefofgenders · 2 days

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I was talking to a friend and found out this isn't normal for everyone to have so if you're one of the people who don't have an emergency hospital bag, this is your sign to start pulling one together. Hope you'll never need it but make it anyways because if you need it and you don't have one you'll kick yourself. It's designed so if you were suddenly rushed to hospital or had to go to A&E/ER then you or someone you know can just grab it and go. Trust me, it makes life so much easier when you have a bag in an allocated space that anyone can grab for you if you need it. All you need is a bag designed to be hand luggage on a plane. Everyone's is different and it's customisable to you but things I have in mine include:

A list of all my current medications and their dosages

A list of all diagnoses with the medications used for them noted since some medications have multiple uses

A list of any mobility or physical limitations due to disabilities or illnesses

A list of emergency contacts

A list of allergies and what happens when I come into contact with those allergens

My regular doctors and specialists information

A change of comfy clothes including two sets of underwear and socks

Pyjamas that are comfy enough to be in but not too revealing since it's a hospital

Dressing gown (if there's space - if not keep one close to the bag for convenience)

Wet wipes

Alcohol hand gel

Deodorant

Chewing gum

Travel sized toothpaste and toothbrush

Travel sized dry shampoo

Travel sized shampoo and conditioner

Travel sized shower gel

A small tube of hand cream

A small microfiber towel

A plastic bag to keep soiled clothes in

A book to read

A puzzle book with at least two pens/pencils

Headphones/ear plugs

A portable phone charger

Spare phone charger with plug

Small comfort items

Small stim items

An eye mask

A small fan

A bottle of water and some small snacks (no nuts!)

I really encourage everyone to build theirs and regularly check it and update it as needed. Even if you think you're the healthiest person in the world, you have no idea what tomorrow will bring and it's always better to be prepared than left floundering during an already stressful situation. Feel free to add on your own ideas for what people can put in theirs. My list is by no means complete and there's bound to be things I didn't think of

#chronic conditions #spoonie #spoonies #actually disabled #disabled #disability life #chronic illness #fibromyalgia #functional neurological disorder #fnd #chronic pain #chronically ill

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fibro-memes · 2 days

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#fibromyalgia #chronic illness #chronic pain #chronic fatigue #spoonie #fibro #chronically ill #invisible illness

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spookietrex · 3 days

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I hate the look on able-bodied people's faces when you can't do a thing that you could do the day before. The look of disappointment, confusion, the "Oh but you could do it before. Are you SURE you can't do it?" Like yes, Brenda, I'm sure that I am in too much pain to function/move from my bed right now so going for a walk when I could move 50 feet yesterday without my cane IS too much.

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monachopsis-11 · 1 day

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chronicillnesshumor · 3 days

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#chronicillness #chronicillnesshumor #chronicillnessmemes #autoimmune #autoimmunememe #spooniememe #spooniehumor #fibromemes #fibromyalgia #spoonies #mecfs #longcovid

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eyeofsummer · 2 days

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do any other systems with chronic pain/fatigue split easier during flare ups? i recently got diagnosed with fibro (i've been aware of my symptoms for a long time i just didn't have a name for them) and i find that my stress tolerance goes down IMMENSELY during flare ups cuz i'm constantly in pain and trying to cope so i don't have the energy to cope with the mental health issues too and the brain fog rly doesn't help with the dissociative symptoms. i've been splitting like crazy recently cuz i can't tolerate stress at all cuz of my illness i just wanna know i'm not going crazy

#fibromyalgia #chronic pain #chronic fatigue #chronic illness #cripplepunk #madpunk #neuropunk #osddid #did system #osdd system #did #osdd #system #endos dni

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vtk13 · 5 months

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“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

#chronic illness #chronically ill #chronic pain #actually chronically ill #pots #pots syndrome #dysautonomia #fibromyalgia #postural orthostatic tachycardia syndrome #supraventricular tachycardia

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something-existing-somewhere · 6 months

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Sorry I Spent all mY spoons this week already and it's fucking Tuesday. We're heading to the knives

#actually spoonie #chronic pain #fibromyalgia #actually mentally ill #chronic illness #aroace agender #spoonie #chronic fatigue #disability #actually disabled #chronic disability #spoon theory

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potsiepumpkin · 1 year

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When the chronic fatigue is chronic

#chronic illness #chronic pain #disability #pots syndrome #postural orthostatic tachycardia syndrome #chronic fatigue #invisible disability #fibromyalgia #spoonie #chronic life #hypermobile eds

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crippledpunks · 7 hours

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if you are a disabled person of any severity and can make it through a grocery shopping trip, i am proud of you and look up to you. if you can't make it through a grocery shopping trip for whatever reason, pain, anxiety, psychosis, ADHD, autism, depression, memory or attention issues, fatigue, exhaustion, irritability, confusion, dissociation, or anything else, you have my condolences because i'm right there with you, that shit sucks ass. it's needlessly complicated and its something that abled people take for granted

of course disabled people cant go across the entire store to put an item back every time. of course disabled people may need help getting items from high or low places. of course disabled people will get lost even in labeled places because of object blindness, blindness/eye problems, bad attention span, anxiety, or other issues, of course there are who can't make it through the entire store without collapsing

these stores are designed to confuse customers and trap them inside for as long as possible to increase impulse spending, of course disabled people are going to struggle to navigate the store. i love you if you're disabled and can navigate the store, kudos to you, but i also love you if you can't. it's not easy and people take for granted how easy it is for them when others can't do it at all

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chronicallydragons · 3 months

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anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me

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fibro-memes · 20 hours

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#fibromyalgia #chronic illness #chronic pain #chronic fatigue #spoonie #fibro #chronically ill #invisible illness

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tumble-tv · 7 months

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"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

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hellyeahsickaf · 4 months

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I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

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chronicillnesshumor · 2 days

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#bitch."#chronicillness #chronicillnesshumor #chronicillnessmemes #autoimmune #autoimmunememe #spooniememe #spooniehumor #fibromemes #fibromyalgia #spoonies #mecfs #longcovid

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