#cfs/me

[crippledpunks]

chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

[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

[vampiresblog]

to me, the universal trust in doctors from people who haven't experienced medical mistreatment/neglect is akin to the trust that upper middle class and white people have in the police. they haven't experienced the mistreatment themselves so they assume it doesn't exist. they assume that every doctor or police officer is only in it for protecting people. they assume that the people who made the rules for these organisations are somehow all-knowing and know the truth about what is morally correct for society. the difference is that there actually is such thing as a good doctor, while there is no such thing as a good cop.

[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!

[violet-phoenix-nebula]

When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.

[burymefaced0wn]

something that i wish was better understood about chronic illness is the inability to do even “lazy” things that people do to relax or wind down

like yeah i want to chill out and watch movies and read books when im in the middle of a crash but that still takes a lot of mental energy and i just have too much brain fog for it a lot of the time

sucks man, i want to do these things but i legit just cant most of the time

[hazycola]

Being chronically ill is like having a curse where every 4 hours you get a random status effect, and most of which are debuffs.

Also you only have 1 action per day and long rests heal 2 hp. You're cooked.

[chronicallysickofthis]

Why does no one talk about the boredom of chronic illness? Like I have to spend so much time resting, that I’ve just run out of things to do, despite trying every hobby I can think of

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

People are very critical about long COVID/ME/CFS patients not being on diets and it's probably the most fucking annoying ableist thing we have to deal with on a regular basis that people think is totally fine or even helpful.

Preparing homemade food takes a ton of energy. Preparing homemade food to fit a diet takes even more energy and is expensive. Carnivore is one of the most common recommendations and, aside from dieticians practically screaming about how dangerous it is due to the complete lack of vitamins, meat is expensive. Even high protein, low carb diets that aren't as strict still require you to spend quite a bit on protein. Diets like anti-inflammatory, mediterranean, low fodmap, and others that restrict certain types of food are often prohibitively complicated, and many times advice is conflicted on whether things are ok to eat and in what amount. The vast majority of restrictive diets don't come with easy-to-prepare meals unless you have a ton of money to drop on expensive meal kits.

And most importantly, for some of us food is all we have left. Being closed inside for 90% of your life is incredibly boring in a way that's hard to describe. I spend 8-10 hours a day in the same place doing the same things because they're all I can do. Eating something interesting is pretty much the only way I get to add enrichment to my life. Diet is not a cure for us, it only provides mild symptom relief if any. It's just not worth giving up the small sliver of joy that is an "unhealthy" meal when it's not going to actually result in us regaining the ability to do other things that bring us joy.

❌If you give dieting advice on this post I will block you. You're annoying and you're missing the point.❌

[thornsinpudding]

Does anyone else with chronic fatigue feel like you can barely talk to people anymore?? I don't even mean like from a "I'm too exhausted to interact with people" standpoint, I mean like you can barely think of things to keep a conversation moving and end up making random sounds or going silent for super long periods of time to the point where it's unsettling and makes people distance themselves... idk, it almost feels like the worse my fatigue gets, the more lonelier I get because I can barely entertain a conversation and talk

[anxious-and-in-pain]

is it really so foreign for the average person to conceptualize others being chronically ill?

i sat down and was part of a twenty-minute-long, coherent group conversation where i faked being more alert and less brain-foggy than i was. it drained a chunk of energy, but i managed it

then this woman said something along the lines of, “a couple years ago, you had some chronic pain, right? so nice to see you on the other side of that!”

no one said i got better. i hadn’t been able to stand for the majority of the conversation. but i guess i looked recovered? despite me being more limited than ever?

i don’t understand the world these people live in. the pain and fatigue will be with me until i die

[survival-of-the-chillest]

Me at the beginning of june . Disability pride month is next!

[hellyeahsickaf]

brain fog is so stupid. Like what do you mean my body is in such rough shape I have nothing but my thoughts but also I can't think?

[chronicallycouchbound]

I’m allowed to be lazy. Disabled or not. Laziness isn’t an inherently bad thing y’all just too caught up in hyper capitalist hustle culture to care. I don’t owe you productivity. I’m allowed to rest.

My rest is radical.

[alexx-is-tired]

I know it might sound silly, but I'm so happy that I started learning how to knit recently.

I've been working on my first big project, a sweater, and it's given me something to be excited about each day. I look forward to getting out of bed so I can work on it, I've been taking more time offline and just listening to music while I knit and it feels almost therapeutic.

It helps distract me a little from the pain and fatigue I'm experiencing, and it's also given me something to feel proud of and accomplished in!

Maybe once it's finished I'll post a picture of it here :3

[crippledpunks]

chronic fatigue is such a bitch because it's not super obvious at first. it creeps up on you some days, but other days, that's just the entire day. you start your day exhausted as hell, and like yeah, you're aware that you're tired, but you blame yourself for feeling this way. it's always your fault somehow. then comes the end of the day and you realize that it was your chronic fatigue, and you blame yourself for beating yourself up all day long. you can't win