#ME/CFS

[cringecorp]

they say you can't pour from an empty cup but i've been doing it my whole life and aside from all of these mysterious ailments it's working out great for me

[unveilandresist]

all the 'get out there and join community, don't isolate yourself' shit really drives me insane as someone made so fucking sick from postviral illness in a world that does not give a single fuck.

I'd love to 'just get out there' but

- I crashed hard after college into bedbound life and lost all my friends

- literally nobody cares about getting other people sick so how am I gonna make new friends

- I'm mostly housebound on the best of my days. I only leave the house for unavoidable chores and they make me feel atrocious.

- honestly between palestine and people being entirely willing to let disabled people and grandma die of covid I'm so god damn disappointed in the world and the people in it. ghoulish fucking society we live in here. we place zero value on human life.

[spoonfulofhannah]

Disabled and chronically ill people are allowed to enjoy things and do things they like (if they’re able) while still being sick and disabled. Yes, even if they aren’t employed. Hope this helps.

[myalgicencephalomyelitiscfstom]

Winner of Campaign of Year award at UK Press Awards was the Times Newspaper for 'ME Awareness & Reform', incl. its coverage of the inquest into the death of Maeve Boothby O'Neill,daughter of Times journalist Sean O'Neill

Interview with S O'Neill (13 mins)

[scandilez]

The constant grief of having to restrain yourself in every part of your life so your symptoms don’t flare up 🫩

[chronicallydragons]

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

[puttingwingsonwords]

sometimes I forget standing up isn’t painful and difficult for most people so I’ll be watching something like game changer and see the people standing behind their podiums the whole episode and think ‘wow don’t they need to sit down. how can they still think coherent thoughts’ and then I’m like oh. yeah. I have a disease

[hellyeahsickaf]

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!

[i-like-rocks22]

[chronic-melon]

Reblog if you understand that disability is not a monolith and two people with the same disability do not have identical experiences ✨

[eternallysluggish]

Do any other chronically ill or disabled people feel like they're watching themselves rot away due to how little they can do as a result of their conditions

[sleepysleepysleepybaby]

chronic illness really makes the weirdest ‘would you rather’ scenarios come to life.

like, would you rather: show up to christmas with no presents for anyone or show up having not showered for a week?

would you rather: feed yourself or do the dishes?

you can choose both but your penalty is to spend an unknown amount of time bedbound afterwards.

[unveilandresist]

still not talking to my dad. and honestly, thank god.

mono made me disabled. covid made me unable to eat gluten and dairy and a whole variety of other foods that I can sorta sometimes manage with cromolyn and antihistamines. sometimes. it's not consistent. literally almost everything shelf stable I'm reacting to.

it is so deeply frustrating to me that from my position, people are throwing their lives away. y'all do not know what you have, but you will when it's gone.

I just wanna eat a piece of pizza like a normal person. pre 2021, I could at least eat a gluten free pizza. not anymore. and this isn't really what matters. it's not about the pizza. it's about the million small joys that become impossible to access when you become disabled or more disabled.

becoming disabled will also show very quickly who cares about you when you're 'inconvenient'. I see so many cases where women (more women end up with autoimmune diseases and related conditions) end up divorced and facing illnesses nobody should have to manage alone. because their shitty ableist partners abandon them when they no longer manage the entire household without expecting them to life a finger.

it took my dad not protecting me from covid to really reckon with the fact that he really just ignored the fact that I was disabled for so many years while doing shit like asking when I was gonna get a job (while almost entirely BEDBOUND) and while never supporting me beyond letting me live in his house and obviously disapproving of my 'laziness'.

fuck ableism. examine your ableism today. and the ableism in your circles. if you suddenly became 'useless' in the eyes of the abled, who would be there for you?

I have become more and more disabled from a mono infection I got over 10 years ago. I suspect an asymptomatic covid infection worsened my symptoms.

my dad refuses to take covid precautions even though a virus previously made me unable to work and mostly housebound.

I basically live in my room now because I lost my shit on him for this and also just never being a parent or taking care of me ever (no apology or acknowledgement), this is just the icing on the cake now that I am a disabled adult.

we haven't spoken to each other since before thanksgiving lol I'm very glad I have a mini fridge in here

fuck people who don't keep us safe as disabled and chronically ill people. we are not inconveniences or obstacles. we are fucking human beings.

please wear masks if you are able. I know some people can't at work. but especially at the grocery store, dr office/pharmacy. we gotta go to these places too and we need your help.

every masked person in public is an affirmation that we fucking matter too. thank you so much to everyone wearing masks in 2024. 💗

[spoonfulofhannah]

Fatigue feels like you have sandbags tied to your feet while trying to walk. It feels like you haven’t slept in weeks. It feels like gravity is pulling you down. It feels like cotton balls are in your head, clouding everything.

Fatigue is NOT the equivalent to being tired.

[liminalweirdo]

Long Covid Justice on COVID and LONG COVID from the mask ban teach-in

COVID/SARS-CoV-2 basics

It is NOT seasonal, like the flu is.

Spreads through air, like smoke.

The 6 feet apart rule is no longer great prevention advice.

Handwashing is a great hygiene practice, but transmission via surfaces is unlikely.

Vaccines do NOT prevent transmission. They reduce symptoms and severity for some.

You can transmit [COVID] while completely asymptomatic. Around half of transmission is as asymptomatic or presymptomatic. Everyone's immune system is different.

Being indoors increases risk of transmission, but you can still get it in crowded outdoor spaces.

What is Long Covid?

Long Covid is a set of health issues after someone has COVID-19

New health issues, ongoing issues, or worsening of previous symptoms and conditions.

It is a biological disease that affects hundreds of millions of people globally. It is a mass disabling condition and crisis.

It can cause significant disability and can be fatal.

Anyone can develop it, and up to 10% of people with COVID will.

Severity of initial infection doesn't correlate to potential to develop Long COVID.

It can be very hard to get a diagnosis and proper treatment or care for Long COVID.

Every time you get COVID infection, you increase your chances of developing Long COVID.

How do we prevent Long COVID? Layers of protection

Masking.

Air filtration.

Ventilation.

Vaccines.

Testing (right now Aug 2024, rapid tests are only about 20% reliable. Try to test two times in 24-48 hours).

Nasal sprays before and after exposure. (little data on these being effective against COVID but some are choosing to use them until more research comes out)

Mouthwashes with CPC (Cetylpyridinium Chloride) before and after exposure. (Must be used for at least 60 seconds)

[chronicallydragons]

Ah yes, my favorite chronic illness game: is this normal, is this new, or am I dying?