#actually chronically ill

[kazoo-rambles]

My toxic trait is honoring my limits in regards to my chronic pain and then pushing my limits because I’m starting to feel better (BECAUSE IVE BEEN HONORING MY LIMITS) then ending up in excruciating pain.

Currently in a McDonald’s rn sobbing because I went on a walk on a bad pain day without my cane and had to find anywhere to sit 💀. Subluxed my hip on the way here and I think when it went back in it pinched a nerve cause I’m having like 7/10 shooting pain everytime I put pressure on it. I’m a fucking dumbass. And on top of that I think because of how much I’ve been doing recently I’ve triggered a RA flare. Fml

#physical disability #actually physically disabled #actually chronically ill #chronic illness #chronically ill #chronic pain #chronic fatigue #physically disabled

[vtk13]

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

#chronic illness #chronically ill #chronic pain #actually chronically ill #pots #pots syndrome #dysautonomia #fibromyalgia #postural orthostatic tachycardia syndrome #supraventricular tachycardia

[anxious-and-in-pain]

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

[love-me-love-my-weirdness]

I think the reason why people want to know what's "wrong" with disabled people is because they want to reassure themselves.

They want you to say you were in a horrific accident or that you have a well known and treatable disease because they think they can stop it happening to them.

They think their health is a given because they aren't a dangerous driver/ an alcoholic/a drug user/obese/an unhealthy eater etc. Obviously this isn't true but it's easier for them to think of it like that.

Until one day they meet someone who did nothing. They're not really asking "what's wrong with you". They're asking "what went wrong" because they think they can avoid it.

So when they meet someone who made all the right choices, who was healthy, who was safe and one day woke up sick and never got better, it scares them because some part of them realises that it could happen to them.

They can exercise and eat a balanced diet and be as careful as possible and it doesn't do a thing and they can't do a thing about it. That terrifies able bodied people.

People like to look for something or someone to blame and they hate it when there's nothing there.

#chronic illness #chronically ill #fnd #chronic fatigue #actually chronically ill #chronic pain #pots #heds #actually disabled #ableism #disabled #physically disabled

[plague-parade]

if upon being told about someones illness/condition, your first thought is to say “have you tried X?” i want you to step back for a moment and think to yourself “if i thought of X after hearing about this condition for the very first time, the person who has this condition very likely has thought of this and possibly tried it already”

we are tired of constantly being told to try the same things by people who didnt know our condition existed five minutes ago.

you dont need to offer any solutions or try to fix us. i know it might seem like a polite thing to do or that it shows you care, there are other ways to show us you care.

#thought of saying something about being told ‘get well soon’ too but idk if im ready for that possible backlash lol #my mom (able bodied) gets really mad at me when i say this kind of stuff is annoying #so i just assume all able bodied people would react that way #actually disabled #disabled #disability pride month #disabled pride month #disability pride #disabled pride #physically disabled #chronically ill #chronic illness #actually chronically ill #cripple punk #cripplepunk #cpunk

[neuroticboyfriend]

tip for people with chronic pain/fatigue: lay down occasionally. haven't laid down in the past 3-5 hours? do it (if you can) and see how you feel. i've found that i'll lay down in bed just to be in my room, but then i get hit with an instant wave of relief because just sitting on the couch was too much for my body, and i didn't realize it.

when you're in pain or fatigued for a long time, your awareness of your body may get wonky - especially if you already struggle w/interoception due to neurodivergency. so. test it, sometimes. you can apply it to other things too: sit if you're standing. stop doing a task if you've been doing it for a while. have a small snack to see if you're hungry. etc. etc.

#softspoonie #disabled #disability #chronic illness #chronically ill #spoonie #spoonie tips #chronic pain #chronicpain #chronic fatigue #actually chronically ill #self care #interoception #neurodivergency #actually neurodivergent #neurodivergent #neurodivergence #health #self help

[cryptcatz]

i have GOT to get over my obsessive worry about being a burden on others oh my god. it is okay to inconvenience people! people in your life who really care about you won’t mind being inconvenienced!! it’s literally just the human experience!!! communicate your needs for the love of god it’ll be FINE!!!!!

#i want to throttle myself sometimes over this #personal #disability #this is abt disability for me but anyone can reblog #actually disabled #chronic illness #actually chronically ill #spoonie #chronically ill #disabled #the ppl who truly love you will accommodate your needs. those who don’t? ditch em

[1980s-slasher-film]

Accommodations are not special, they’re not a leg up, they’re not a benefit. They’re not putting anyone ahead in the race, nor are they taking anything away from others.

They exist to put us on a level playing ground to everyone else, and nothing more.

#ngl this is half directed at the autistics using acess passes at theme parks #specially the ones that don’t actually need it #obviously you can utilize them if you actually need them #but I mean the people that say skipping lines is a ‘benefit of autism’ or whatever #I’m seeing it pop up again #and it’s pissing me offff #disabled #actually disabled #chronic illness #actually chronically ill #autism #actually autistic #adhd #actually adhd #arthritis #pots #pots syndrome #heds #hypermobile ehlers danlos #ehlers danlos syndrome

[pots-plus-pans]

destigmatize having a body/body parts that look “gross”

destigmatize having a reoccurring rash that you can’t control

destigmatize “strange looking” veins

destigmatize “gross” scarring

destigmatize having bodies that are broken and express that

destigmatize being disabled and having “atypical” physical manifestations of said disability

disabled bodies are beautiful

#actually disabled #chronic illness #disability #disabled #chronically ill #cripple punk #spoonie #cripplepunk #physically disabled #cpunk #chronic fatigue #crip punk #potsie #chronic pain #physical disability #pots #pots syndrome #actually chronically ill #actuallydisabled #all of these are things i have/have been told i have by other people

[apologyacceptedcaptainneeda]

DONT take a persons medical device

I shouldn’t have to say that but here we are

One of the managers at work likes to take and hide peoples stuff as a joke. My manager took my pulse ox when I wasn’t looking. When I noticed it was gone I started to panic. A pulse ox is minimum $30 and I’ve had mine for over 7 years and have named it. So yeah I was panicking. I immediately paged my manager to my register and when he arrived I demanded it back. He did give it back.

I informed him that it was stupid and dangerous of him to take a medical device from someone especially like that.

So again

DONT TAKE A PERSONS MEDICAL DEVICE

#spoonie #actually disabled #disabled #disability #medical devices #pulse oximeter #actually spoonie #low oxygen #oxygen saturation #potsie #pots syndrome #postural orthostatic tachycardia syndrome #chronicallyawesome #chronically ill #actually chronically ill #chronic illness #chronicwarrior

[mothcain]

Nah but let’s talk abt how ppl use disability terms/harmful stereotypes/ derogatory words so casually this disabled pride month (tw ableism below)

The new terms are “sch*zoposting” and “delulu” but shit like this has been around for years and it’s so incredibly frustrating.

Another example is those TikTok POVS about “the weird kid in class” but they are all stereotypes of autistic ppl.

Or the misuse of the word triggered, the misuse of the word OCD, the misuse of gaslighting, of cr*pple, “are you deaf?” “Are you blind?” “Hellen Keller isn’t real.” I could go on and on but I will simply say this.

Disabled people are real people with feelings, emotions and lives. We deserve to use the terms that we need to COMFORTABLY. We deserve to exist without people taking the language used in the context of ourselves and putting it in a negative light.

We deserve to exist.

We deserve happiness.

Check in on your disabled friends.

Don’t assume things about people you don’t know.

#local bitch speaks #disability pride month #ableism tw #cripple punk #actuallyautistic #actually adhd #actually ptsd #actually disabled #actually chronically ill #unreality tw #1k #1.5k #2k #2.5k #3k #3.5k #4k

[stardust-maple]

I made my own pain and fatigue scale charts. Because I'm so adept at overcoming my symptoms the normal pain scale doesn't really work for me. I adjusted my numbers so that I could change the number into something I could tell a doctor when they inevitably ask me to rate my pain.

[Image Description: Pain Scale Chart with rainbow gradient background for each row, starting at red and ending at blue. Row 1: Mine Drs Pain Scale Description Row 2: 10 X I am not leaving my bedroom or bathroom, someone needs to bring me food and I need something to dull the pain or the pain will cause tears. Row 3: 9 X I am not leaving my bedroom and bathroom for anything other than food. Row 4: 8 10 Speaking is difficult. It is no longer practical to do activities outside of the bathroom or bedroom, but they can be done with assistance. Row 5: 7 9 Necessary care activities are sacrificed. Academic activities and social activities can no longer be tolerated. Row 6: 6 8 My pain is tiring. Paying attention is difficult. All activities require pacing and extra effort. Row 7: 5 7 My pain is so distracting it is making me tired. It is hard to think. Necessary care activities are no longer all doable. Row 8: 4 6 My pain is so distracting it is making me tired. It is harder to think. Necessary care activities are starting to be limited. Row 9: 3 5 I can continue to do most activities Row 10: 2 4 My pain bothers me but I can ignore it most of the time Row 11: 1 3 My pain bothers me, but I can ignore it most of the time. Row 12: 0 2 I am aware of my pain only when I pay attention to it Row 13: X 1 My pain is hardly noticeable Row 14: X 0 I have no pain. END Image Description]

[Image Description:

Fatigue Scale Chart with rainbow gradient background for each row, starting at red and ending at blue. Row 1: Mine Drs Fatigue Scale Description Row 2: 10 X Can barely sit up, needs assistance to get out of bed. Holding conversations is impossible. Laying down for most of the day is necessary. It is difficult to eat. Focusing is strenuous. Row 3: 9 X Able to walk and stand for short distances. Holding conversations is difficult. Laying down for most of the day is necessary. It is difficult to eat. Focusing is strenuous. Row 4: 8 10 Able to walk and stand for short distances. Holding conversations is difficult. Sitting for long Periods of time is difficult. It is difficult to eat. Focusing is strenuous. Preparing a meal isn’t possible. Row 5: 7 9 Holding conversations is difficult. Sitting or standing for long Periods of time is difficult. It is difficult to eat. Focusing is strenuous. Row 6: 6 8 Sitting or standing for long Periods of time is difficult. It is difficult to eat. Focusing is difficult. Preparing a meal is difficult. Row 7: 5 7 Standing or walking for long periods is difficult. It is difficult to eat. Focusing is difficult. Row 8: 4 6 Standing or walking for long periods is difficult. Focusing is difficult. Row 9: 3 5 Cooking for longer than 15 minutes is extremely challenging. Row 10: 2 4 Not everything can be done in the day. Activities are slowed down. Difficult mental challenges are sacrificed. Row 11: 1 3 Tiredness makes it difficult to enjoy fun activities. Row 12: 0 2 Things take more effort than usual, but everything is still doable. Row 13: X 1 Slightly tired but still able to carry on as normal Row 14: X 0 Not tired at all END Image Description.]

Feel free to use them yourself if you like them!

#chronic illness #chronic pain #chronic condition #disability #chronic fatigue #cfs/me #chronically ill #spoonie #amps #disabled #actually chronically ill #actually disabled #stardust maple #pain scale #fatigue scale #chronic fatigue scale #chronic pain scale #long post

[evilwriter37]

Happy Disability Pride Month! This goes to the visibly disabled people, the invisible disabled people, the chronically ill, the mentally ill, the chronic pain patients, the chronic fatigue patients, any spoonie out there. You deserve love and care. You're worth it. You have value.

#disability #disability pride month #actually disabled #actually chronically ill #mental illness #chronic illness #chronic pain #chronic fatigue #spoonie

[chronic-counter-user000]

you're allowed, love. you're allowed to hate that you can't do things. you're allowed to despise your own family for denying you anything. you're allowed to be spiteful and you're allowed to be irritable.

you didn't choose this.

and you're allowed to yell.

scream, love.

fucking scream.

I DESERVED MOBILITY AIDS.

I DESERVED HELP.

I DESERVED A BETTER COMMUNITY.

because you did, you did deserve those things.

you're ill.

#chronic illness #chronic fatigue #chronically ill #heds #chronic pain #hypermobile eds #invisible illness #disabled #actually chronically ill #crip punk

[pro-crastinate17]

hello!! so im going to try to make a disability inclusive picrew and id like some help making sure i include as much as i can!

the person would be seated and pretty much all of the body would be visible. ill post it when im done!

its mostly focused on phys disabilities, bc i so rarely can find picrews w good diverse mobility aid options, but ofc im including non phys disabilities as well! (sorry for clunky phrasing, im unclear on the preferred term for non phys disabilities so thats the term ive been using)

what i have so far is below the read more. be warned it is a very long list! (every option/category of option i could think of)

if you think i missed something, please recommend it!!! (related note: id much rather get recommended something that is already on the list than miss something!)

category: head

various jaw shapes 

missing jaw 

crooked/misaligned jaw

category: skin

wide range of skin tones, including white/extremely pale (albino) 

freckles, lots of scar variation (including burns), vitiligo, acne, facial hair, eye bags, other skin conditions (trying to make a list)

breathing tubes, masks, bandages 

bindis 

category: eyes 

blue, grey, green, hazel, medium brown, dark brown, black, red 

heterochromia options 

lazy eye options 

clouded eye options 

closed eyes that look like winking and closed eyes that don't 

missing eyes

category: mouth 

general expressions 

variations for color 

variations for cleft lip, scars, facial paralysis 

category: ears 

ear size, shape, missing ears, deformed ears

category: eye/ear accessories 

earrings, earplugs, hearing aids, bone anchored hearing aids, headphones, earmuffs (modifications for missing/deformed ears), cochlear implant

glasses, sunglasses, blue light glasses, eye patches, eye masks/bandages 

category: nose 

various shapes & sizes, bumpy noses, deformed noses  

category: eyebrows 

lots of expression options, thickness options, color options (including white) 

one missing, scarring, eyebrow slits 

category: body 

body types: very skinny, skinny, fat, very fat (options for muscularity too if i can figure out how)

body hair, scarring, freckles, tattoos   

range of missing limbs, deformed limbs, prosthetics   

diabetes patch 

category: hair 

wide range of hairstyles, bangs, and colors 

patchy hair, scalp scarring, receding hairline 

category: head coverings

range of hats, hair accessories, headbands, bandanas    

range of hijabs, turbans, kippot (+ more variation in cultural headwear if theres space)

head bandages 

category: clothes

range of styles and colors 

adaptable to body types (+ breasts), missing/deformed limbs 

category: shoes 

range of styles 

adaptable to body types, missing foot/feet 

category: hand accessories  

gloves, bracelets, rings, nails, wrist braces, splint rings

range of types, adaptable to missing/deformed hands 

category: pins 

range of queer pride flags 

pronoun pins 

animals, fandoms/characters (def muppets, feel free to recommend characters and i'll try to include some of the most popular ones) 

general disability pride, cripplepunk, madpunk, sign union flag, & pin (for systems), specific disabilities (need some help with these, send me specific flags and i’ll include them!) 

category: seat 

chair, manual wheelchair, power chair, spinny chair, throne, rollator, electric scooter 

category: mobility aids 

cane, white cane, crutches (underarm/axillary and forearm), rollator, walker (with and without wheels), electric scooter  

joint braces (shoulder, elbow, knee, ankle, back, others?), joint tape, compression garments 

category: other disability aids

AAC tablets, word cards, glucose monitor, sunflower lanyard, inhaler, medical id bracelet

stoma bag, central line catheter, picc line catheter, heart monitor, breathing tube, feeding tube (nasal and abdominal), tracheostomy 

stim toys/chewelry, stuffed animals, phone 

service animals

#disability #chronic disability #chronic illness #physical disability #physically disabled #cripple punk #cpunk #cripplepunk #actually disabled #disabled #disabled community #neurodivergent #actually neurodivergent #madpunk #neurodiversity #neuropunk #actually mentally ill #mental illness #actually chronically ill #words from my weird little brain #disability picrew tag

[cripp-tid]

if you can't have kids for medical reasons, i love you. a lot of people emphasize the joy of children, talk about how they changed their life, etc., and that's just not possible for some of us.

so. shoutout to:

• people who can "technically" have children but can't risk the financial stress due to being already disabled/chronically ill

• people who can't get off their medication long enough to conceive

• people with uteruses who have endometriosis or PCOS

• people who can get pregnant, but have a connective tissue disorder which makes them unable to handle the progesterone during pregnancy since it causes flares (hi, it's me)

• intersex conditions that makes you infertile

• anyone who has a terminal illness

• people who've had medically necessary surgeries which caused infertility

• people with genetic conditions they don't want to pass on (me again)

• those who require IVF that's just not in the cards for whatever reason

• and many, many others

• feel free to add on

you're not broken, you have a reason for being like this. i know it's hard. i love you. it's going to be ok. 💙

#phoenix.txt #crippled #cripplepunk #cripple punk #cpunk #c punk #disabled #disability #chronic illness #chronic pain #chronically ill #actually disabled #actually chronically ill #spoonie #spoonies #eds zebra #ehlers danlos syndrome #hypermobility #hypermobile ehlers danlos #heds #intersex #i am kissing you all on the mouth