#it’s the chronic illness for me | Explore Tumblr Posts and Blogs

longlostdiaries · 1 year

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I don't know who needs to hear this but:

-"it only hurts a little" is still pain

-"I can ignore it" is still pain

-"I can cope with/manage it" is still pain

-"it's bearable" is still pain

-"I can push through it" is still pain

-"it doesn't hurt that much" is still pain

-"it doesn't stop me from doing x" is still pain

You don't need to be in agonizing pain to be in pain.

#it's me. I'm the one who needs to hear this #disabled #disability #chronic pain #chronic illness #spoonie #longlostposts

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addamatic · 3 months

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If you have a stockpile you are an addict

Btw you have to refill on the same day you run out of medication

Btw you will have seizures and possibly die if you miss your medication

Btw the pharmacy will not order your medication in advance of the one day you are allowed to call and refill it

But you are an addict who should be criminalized if you have a few days stockpiled so you don’t have a seizure and die.

This is a normal way to treat disabled people who need medication that keeps them from dying.

#chronic illness #disability #cripple punk #ableism #the medical system wants to kill me personally and everyone I love

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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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a-sassy-bench · 4 months

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do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

#if one more person tells me to take a sick day i'm going to throw something at them #i just honestly cannot anymore #disabilties #disabled #actually disabled #epilepsy #ehlers danlos syndrome #physical disability #neurological disability #actually epileptic #zebra #chronically ill #chronic illness #spoonie #chronic fatigue #chronic pain #c punk #crip punk #cripple punk

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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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chronicallydragons · 2 months

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

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araekniarchive · 9 months

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@mnvart // Kaveh Akbar, 'Calling A Wolf A Wolf' // @PinkRangerLB on Twitter // @kosmogrl // @devinsturk, '15 Proverbs for the Fellow Chronically Ill' // Jasmine Deporta // Anaïs Nin, House of Incest // the gentle wisdom uquiz by @inkskinned // Rora Blue, 'Sweet Dreams' // Hala Alyan, Dear Layal

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thoradvice · 2 months

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you don't have to be glad that it's not worse. that goes for everything. disability, trauma, mental illness, grades, finances, whatever. you're /allowed/ to be upset that things are the way they are. you don't have to be grateful for your situation - bad is bad. somebody else's suffering doesn't make yours less painful. it's okay to be angry

#my mom tells me that my disability could be worse all the time . god i hate it #disability #chronic illness #trauma #recovery #thor speaks

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ink-asunder · 10 months

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We NEED to reevaluate how we view people with "red flags" that don't actually indicate harm to anyone. Things like "doesn't like animals," "doesn't have pets," "my pets immediately distrust them, so that means they're Secretly Evil."

I have a psychotic disorder. I suffer from flat affect. I have zero control over how I am emoting, and very often my emotional readout is completely blank. A LOT of animals (dogs especially) have exhibited aggression and fear around me ever since this started. (There are only TWO dogs I've met in the last five years that didn't BITE ME.) Dogs are unsettled by me because of a symptom of my psychosis--a condition that is out of my control that IS NOT DANGEROUS and doesn't harm anyone.

I also have a severe autoimmune disease and severe allergies to basically all animals. Whenever I tell people I can't come over because they have pets, or I don't have/want pets of my own, the IMMEDIATE response I always get is "why don't you like animals?" So I'm always pretty pissed off when I have to say, "I'm severely allergic. Don't fucking assume I have an undesireable quality just because I'm not a pet owner."

Another ableist red flag we need to talk about is "has no other friends/all their friends break up with them." Hi. I'm physically disabled with a digestive disease and a degenerative disease in my spine. That means my dietary restrictions are stupid and I can't sit/stand/walk for more than 15 minutes without being in pain. Most of the friends I break up with, I do so BECAUSE THEY ARE INCREDIBLY ABLEIST TO ME with no visible potential of changing. From people relentlessly harrassing me about lifestyle changes to not accepting correction or feedback when I tell them "hey, you CAN'T do x because it triggers y condition." If they argue or blow me off, I'm not their fucking friend!

Tl;dr: Disabled, chronically ill, and people with "scary" mental illnesses are often lumped in with "bad people" for characteristics that hurt no one and aren't in their control. Stop using "my dog is uncomfortable around them" as a litmus test for everyone you hang out with.

#chronic illness #disabled #disability #chronic pain #ableism #saneism #not to mention that its literally dangerous for disabled and psychotic people to be isolated and demonized.#its not just that no one want to be my friend. its that people are that much closer to putting me in danger because i dont fit-#-their standard of a 'good person.'

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p1xelpc · 1 year

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i love you shower chairs i love you pain meds i love you canes i love you wheelchairs i love you braces i love you crutches i love you nausea meds i love you inhaler i love you weighted blanket i love you ice pack i love you heating pad i love you loose clothing i love you giant water bottle i love you help from other people i love you mobility aides i love you disability aides

#mostly just did ones that apply to me #my physical aides anyway #disabilities #disability #disabled #invisible disability #actually disabled #chronically ill #chronic fatigue #chronic pain #chronic migraine #mobility aid #physically disabled #physical therapy #physical disability #c punk #repitition

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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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chronicallycouchbound · 8 months

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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.

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wiisagi-maiingan · 11 months

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I'm all for natural remedies and traditional medicine, but I think when your "natural remedy" is based on the idea that water can become medicinal by being in the presence of a teeny itty bit amount of something, then it's probably bullshit and you're getting scammed. Go buy some ibuprofen or see a doctor.

#this is a long way for me to say that homeopathy is a scam!!#and that ''homeopathic professionals'' deliberately prey on vulnerable and scared people #especially chronically and terminally ill women looking for help and answers to illnesses they don't understand #so then they end up paying absurd money for fucking PLACEBOS #literal bottles of water and sugar pills that can supposedly cure their diabetes or fibromyalgia or cancer #and it's fucking disgusting and shameful okay

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theygender · 2 years

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August 11, 2022

I just wanted to give everyone a heads up that 30+ brands of nutrition drinks including but not limited to Ensure, Pediasure, Glucerna, Oatly, and Premier Protein just got recalled for possible contamination with the bacteria that causes botulism, a paralytic toxin with a lethal dose of 1.3 nanograms. If you've purchased one of the affected lot numbers please return it to the store to be properly disposed of as a biohazard but do not accept any compensatory gift cards because that can be counted as a settlement if you need to file a lawsuit for any potential damages caused by this later on. If you have any questions regarding the recall there's a phone number listed in the article above that you can call, but if you believe you may have ingested toxins then please call your local poison control hotline. Stay safe

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unveilandresist · 4 months

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by January 10th 1 in 3 people will have had this wave of covid. covid causes long term damage with each infection and wears down your immunity. you do not want this. there is no cure for long covid or me/cfs and there is a significant chance (last I checked I think it was 1/5 infections) of getting long covid that increases with each infection. please protect yourself and your loved ones by wearing a mask. variants have become more transmissible so a n95 or kn95 is the minimum protection to keep yourself reasonably safe(r) from getting covid.

it is important to understand often viruses do not simply clear up and go away. like chicken pox and shingles or what we now think of as polio that is actually post polio syndrome. polio symptoms were mild and 75% of cases are asymptomatic. we do not yet see the full scope of what this virus will do over our lifetimes. as someone who had my entire life derailed by me/cfs after having mono, (almost 10 years ago! it hasn't gotten better!) we have to take pathogens more seriously if we care about ourselves and our communities.

I'm willing and open to talk with people who want to understand better what covid does to our bodies and how we can best practice community care and also harm reduction if we're stuck in unsafe situations at home or work (certain mouthwashes and nasal sprays can help).

if you're watching what's happening in Palestine and live in the US, the government doesn't care about your life either. They lied about palestine and they lied about covid too. It is not just a cold.

#covid #solidarity #mutual aid #social justice #chronic illness #disability #me/cfs #chronic fatigue syndrome #mask up

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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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