#CFS

[m155y-74]

cfs is truly one of the worst things ever cause if one more person asks me if i’m feeling okay i’m gonna lose it

I KNOW I LOOK LIKE SHIT. IVE LOOKED LIKE SHIT FOR THE PAST WEEK. I AM AWARE OF THE SITUATION. STOP. POINTING. IT. OUT.

[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

[multifariousmayhem]

me: why do i feel like i dont have the same amount of hours than everyone else?

therapist: because you dont

me: wh

therapist: the people you are comparing yourself to dont spend multiple hours a day managing chronic pain and fatigue

me:

[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!

[neurotichunter]

Why shit like this is so hurtful to people with chronic illnesses:

I get it, if you're having a (light) depressive episode, things like this will definitely help, but ppl treat them as if they were The Cure™️ for everything, regardless of factors like severity of symptoms etc, making ppl like me feel bad bc they can't do it (like "it's your own fault that you're feeling bad, go read a book, it'll help" - no, it won't).

[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.

[chronicillnesshumor]

Source: thechronicallyhonest on Insta

[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

[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

[chronicallyillchronicallyonline]

Me trying to manage all of my symptoms and medication side effects:

[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.

[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

[ghostonly]

Irritates the hell out of me when people respond to a post or comment like, "everyone does this, it's not just [disorder/illness/neurotype], it's called being a person."

Yeah and everyone coughs once in a while but it doesn't mean someone with pneumonia doesn't cough?? It doesn't mean pneumonia doesn't cause coughing??

Everyone gets dizzy once in a while but it doesn't mean vertigo doesn't exist??

Just about every symptom or group-common trait is going to be experienced by people who don't belong to those groups or have that disorder. It's about the frequency and intensity with which that symptom or trait comes up.

[multifariousmayhem]

me: maybe i am not chronically ill, maybe people are right and i just need to push harder and stop being lazy

me going through a massive flare: fucking hell

[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?