#ME/cfs

[haridraws]

Hourly comic day, part 2

[myalgicencephalomyelitiscfstom]

Common problems in ME/CFS & Long Covid

[eternallysluggish]

What are you meant to do when your chronic illness or disability takes away the ability to do the things that make you who you are?

[chronic-melon]

Friendly reminder that MIGRAINES SUCK AND THEY’RE VERY STUPID.

Nausea, dizziness, light sensitivity, blinding pain. It’s bad and I hate it. That’s it, that’s the post.

[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!

[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.

[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.

[liminalweirdo]

mask bans are fascist

[juliamccartney]

gentle reminder that it's not too late to get into the habit of wearing masks again 😷

[trulynamelessworld]

✨ Things I'm insecure about because of my disabilities ✨

Being unreliable

Having a messy room

Abdominal bloating

Not being 100% on top of my hygiene

Having to excuse myself to the washroom more often

Using my mobility aids

Random bruising

My chicken (weak) legs

Having to explain myself to strangers

Taking the accessible seating on the bus/train

Tripping over myself

My brain fog (I used to have a fantastic memory, I feel like I come off as stupid now)

Being super sweaty

Not being "good representation"

Leaving functions early

Sitting on the floor in public

And so much more. This is a reminder that you're not alone in feeling gross or undesirable, it's also okay to feel that way.

Sometimes you need to feel the feelings before you deal with them.

[myalgicencephalomyelitiscfstom]

Press release for this Canadian study [Metabolomic and immune alterations in long COVID patients with Chronic Fatigue Syndrome]:

“We do not actually believe that long COVID is a separate new disease,” explains rheumatologist and clinical immunologist Jan Willem Cohen Tervaert, professor of medicine, who is an expert in fatigue associated with rheumatic illnesses.

“Some symptoms — such as the loss of taste and chest pain — are very specific for COVID, but we see a common pathway with ME/CFS, which leads to the same fatigue, brain fog, post-exertional malaise, widespread pain and non-refreshing sleep,” he says.

[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

[cyanomys]

Dianna Cowern (formerly Physics Girl) and her caretakers are doing a livestream fundraiser today for research on Long Covid and ME/CFS. They’re taking questions and having interviews from her friends as well as experts. Any donation helps.

[chronicallydragons]

Anyone else with chronic pain ever get really absorbed in a project and dissociate from your body while you're working but then you finish and you come back to your body and you're just like AAAAAAAHHH! WHAT'S WRONG?? oh yeah. The horrors. Never mind