#CFS | Explore Tumblr Posts and Blogs

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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anxious-and-in-pain · 1 year

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it’s okay to do things that make your symptoms worse (as long as you’ll stay safe)

every once in a while you need to eat something yummy. or go on a walk. or a trip to the zoo. take a hot shower. cry your eyes out. dance. listen to music. draw for way to long. write. laugh. sit in a cafe with a friend. paint your nails. dye your hair. go on a run. pet a cat

sometimes you need to do things that are cathartic or make yourself feel alive. sometimes you need the reminder of why you’re fighting so hard to stay alive

this is your reminder that just because it makes your symptoms worse, it isn’t always the wrong thing to do. there can be value in these actions

#chronically ill #chronic illness #chronic pain #fibromyalgia #spoonie #fibro #ibd #central sensitization #disabled #myposts #chronic fatigue #cat #disability #chronic fatigue syndrome #actually chronically ill #cfs #cfs/me #food mention

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violet-phoenix-nebula · 1 month

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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.

#disability #disabilities #invisible disability #chronic disability #disabled #physically disabled #chronic fatigue syndrome #chronic illness #chronic pain #chronic fatigue #chronically ill #cfs #cfs/me #mecfs #myalgic encephalomyelitis

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normal-with-adhd-is-a-joke · 9 months

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What people don't understand about "no excess physical activity/exercise" is that everything is physical activity.

I told the people at orthopedic urgent care that I can't do physical therapy because my condition doesn't allow for exercise. They gave me a list of things I could do at home. They were exercises. I was frustrated at first, but it made me realize how able bodied people can't conceptualize "no exercise" at all.

Walking down two hallways to get to my college class is exercise. Cooking and baking are exercise. Getting something from downstairs is exercise. Even typing is exercise. Each one of those things chips away at my ability to do simple things, like sit upright or speak or even just stay awake. When someone says they can't exercise for medical reasons, that means they can't, and pushing them to do physical activity because it "doesn't take that much energy" is dangerous. Everything takes energy.

#cfs #chronic fatigue syndrome #cpunk #cripple punk

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ghostonly · 5 months

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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.

#disability #adhd #autism #asd #nd #actually adhd #neurodivergent #actually disabled #disabled #pots #pots syndrome #postural orthostatic tachycardia syndrome #fibro #cfs #chronic pain #chronic illness #chronic fatigue #chronic fatigue syndrome

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asharestupid · 6 months

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I don't think some ppl understand that when disabled ppl say that it takes a lot of work to do something they're saying that it's a lot harder for them to do it than it is for you. To you it's a 20 minute task, for me it will take 2 hours minimum. All it takes from you to do it is cleaning supplies. Meanwhile it costs me a meltdown, very sore muscles, and 2 days of rest after. There's also a good chance I will forget to eat, drink, or use the bathroom while I'm doing it. When I say it's hard for me to do something I mean it's hard I don't mean that I don't want to do it.

#disability #autism #disabled #cfs #chronic fatigue syndrome #chronic fatigue #disabilities #actually disabled #disability awareness #physical disability #autistic people #adhd

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valeria-sage · 6 months

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How can chronic pain patients be “addicted to pain meds?” That’s like telling someone with a prosthetic that they’re addicted to their prosthetic. Or a cardio patient that they’re addicted to their pacemaker. Or a diabetic that they’re addicted to insulin. What is the thought process here?

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drinksss · 2 months

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sleepy weevil

#artists on tumblr #entomology #tiny spiny weevil #prionomerus carinatus #blender #3D modeling #render #cycles #pillow #chronic fatigue #CFS #(honestly bro the only thing I can do other than sleep during a flairup is 3D modeling. it’s just easy IDK)

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calmmyfears · 4 months

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I wished abled people would understand better that when I'm "giving up" on something it actually means I can't give energy to this because other stuff needs my energy more and I only have a very limited amount of energy that depends from day to day. I can't control it either no matter how hard I try. I feel like I have been explaining this my whole life now and it still doesn't matter, no one listens.

#spoonie #chronic fatigue #fibromyalgia #cfs/me #cfs #chronic illness #invisible disability

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crippledpunks · 2 years

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i need people to understand that when a person with a chronic illness talks about the fatigue that comes with it, we're not talking about the tiredness that comes from a 10 hour shift at work, we're talking about the inherent exhausting heavy malaise that hangs on your entire body like a weighted blanket from the time you wake up in the morning and doesn't get any lighter as the day goes on.

fatigue doesn't come from exertion. it's just innate- and when it does come from exertion, it's been worse than the innate fatigue that was already there in the first place, and it adds on top of it, not replaces it.

#fatigue #chronic fatigue syndrome #cfs #myalgic encephalomyelitis #cfs/me #chronically chill #chronically ill #actually disabled #fibromyalgia #arthritis #multiple sclerosis #hypermobile spectrum disorder #hypermobile ehlers danlos #heds #eds

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triumph-of-adaptation · 2 months

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Friends of Palestine Western Australia rally in Fremantle yesterday x

#bed bound #spoonie #chronic illness #disabled #activism #Palestine #disability #protest #fibromyalgia #cfs #chronic pain #chronic fatigue

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hellyeahsickaf · 2 months

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When I say "I can't do that" what I'm not saying is:

I don't feel interested in doing that

I don't care enough to

I'm too good to be doing that

I don't think you deserve that of me

I'm not in the mood to do that

Not now, I'll do it later

Maybe

If that's what I meant, that's what I would say

What I am saying is:

It will negatively affect me in ways I can't afford

I simply can't physically fucking do that

I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that

And if I explain that I am unable to do that, it is not an invitation to:

Tell me how much my disability hurts your feelings

Ask if I'm sure

Interrogate me because you believe yourself to be the judge of how unwell is unwell enough

Put words in my mouth ("why don't you care?")

Tell me how easy it would be

Remind me of how many other things I've been unable to do. I keep the score more than you do

Accuse me of exaggerating or faking to avoid doing it

Ask me again shortly

Make assumptions about additional explanations. (I must be mad at you, I must not care about this)

Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")

Ask what it would take for me to suddenly be capable of doing it

Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you

Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.

Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought

Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)

But it is an invitation to:

Leave me the fuck alone about it 💕

#chronic illness #chronic pain #disability #actually disabled #chronic fаtiguе ѕуndrоmе #spoonie #cfs #fibromyalgia #cfs/me #me/cfs #cpunk #cripplepunk #pots #long covid #yes this is about something that happened lmfao #feel free to add more #bc I am sick of this!#this is about physical disability. please don't derail it

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kafus · 1 year

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i just found out this fatigue scale is a thing

i am not a doctor but i am saying this as someone with personal experience with POTS: 0-2 is within the realm of normal for the average person and mental illness (ie. depression) can absolutely bring you to a 3-5 but if you are averaging 5+ everyday like i am i am begging you to see a doctor if u have access to one 🙏 that isn’t normal and could point to chronic illness. being fatigued like that is not laziness or personal failure and you deserve care for it

#kiki was here #kiki.txt #disability #pots #cfs #i thought for years my level of fatigue was normal #or i was just tired bc bad priorities #which is why i felt compelled to post this #fr i promise you deserve healthcare

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beeslippers · 7 months

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Lying down and resting isn’t enough I need my whole body evaporated by a giant laser beam

#me/cfs #chronic fatigue syndrome #myalgic encephalomyelitis #cfs #cfs (chronic fatigue syndrome)#cfs/me #chronic illness #chronically ill #chronic fatigue

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exhaustedbunnytm · 2 months

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I thought this doctor would be different…but no…

“have you tried anti-depressants?” - yes all of them. I have treatment resistant depression I have literally done almost fucking everything.

“are you sure you eat healthy? You don’t have too much sugar?” - no processed foods, i occasionally allow myself to indulge, i eat a diet planned by a nutritionist.

“are you sure it is not psychosomatic?” - my mental health is struggling because my body is declining and I am fucking exhausted all the time. I am struggling mentally because of my physical illness.

“have you tried a multi-vitamin?” - yes, and they make me feel like shit more. I still take other vitamins.

“Im not referring you, just so you can get opioids.” - i just want to see a rheumatologist and a pain and spine specialist…for my fucking pain, that I am in every day. I want a diagnosis and no pain.

*googles cfs and reads from the same document I have read* “have you tried meditation or yoga?” - go fuck yourself, you list yourself as a chronic illness specialist and you’re googling this shit. Meditation and yoga have never and will never work for me, I have tried so many times.

“you are completely healthy, you’ve been seen by everyone” - no I have not seen everyone, i need to see a rheumatologist, and a pain and spine specialist, and someone that will actually help me try to have a quality of life.

I have been striped of everything I enjoy, i am a shell of what I once was because my hands are always in pain, my joints are swollen. I am a fucking artist who hasn’t made art in 8 months because my hands hurt so much I can’t make work. I went from being in 8+ shows a year to not even being able to make work. This has been devastating to me, I have never not been able to make art in some form. I have lost a core part of me that I thought I would never lose.

Just because I look healthy on paper does not mean I am. It does not mean it is psychosomatic, my pain is real. This is real. It is not in my head…

#brain fog #cfs #chronically ill #spoonie #chronic illness #invisible illness #chronic pain #chronic fatigue #mental health #emotional #chronic fatigue syndrome #cfs/me #me cfs #cfs (chronic fatigue syndrome)#exhaustedbunnytm #mentally tired #vent post #tw vent

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kestrel-tree · 8 months

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The fun thing about having both ADHD and chronic illness is you can take an Adderall and spend 4 hours cosplaying as non-disabled then around 4pm your body is like 'here's your tab' and gives you the whole day's symptoms at once.

#I have this neat trick where I start reorganizing my entire room then just fall over #ahdh #actuallyadhd #actually adhd #cfs/me #cfs #spoonie #chronic fatigue #chronic illness #halogen

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