#Chronically ill

[fibro-memes]

[matchakuracat]

Being asked to rate your pain on a scale as someone who has had chronic pain for several years is so difficult. Like how am I supposed to rate the pain I am experiencing from 1-10 when I have no idea what it feels like to not be in pain. Like what is 0? what is 1?? what is even 10???? What am I comparing it to???? My 5 can be someone else's 10 and their 10 can be someone else's 2, and how is a doctor or anyone else for that matter supposed to tell the difference? Maybe it's because I'm autistic and I'm just overthinking it but it literally makes no sense to me.

[cripplemetal]

i read and follow the same hashtags every single day here. the day i joined c punk community? i was blessed. it's SO comforting to know i'm not alone in this, to know there are so many people like me. i love reading your posts, seeing your selfies with your mobility aids, just witnessing you being here.

so if you make posts about cpunk, disabilities and mobility aids, you directly help me feel better every day.

[pleastrop]

I was talking to my mom about mobility aids and also said that I am going to buy compression socks/gloves and she got SO mad, she told me those things are for old people and that I'm not going to use any of those things, even if I pay for them myself, all because "you're only 19, you DON'T need them!!" I'm so tired

[justsomerandomgay]

i remember being ten years old and wishing to die rather than experience the pain i was in yet still my parents and my doctors didn’t believe me. sometimes it just hits me. that wasn’t a normal experience for a ten year old, was it?

[this-teen-is-on-fireee]

Moment of silence for all the heat sensitive disabled ppl as the world actively tries to kill us this summer

[spookietrex]

I hate the look on able-bodied people's faces when you can't do a thing that you could do the day before. The look of disappointment, confusion, the "Oh but you could do it before. Are you SURE you can't do it?" Like yes, Brenda, I'm sure that I am in too much pain to function/move from my bed right now so going for a walk when I could move 50 feet yesterday without my cane IS too much.

[permanently-sprained-ankle]

Health update for those who care:

Had a hypomanic episode because I forgot to pick up my antispsychotics

Which led to me overdoing physical activity and therefore a BAD pain flare up that I’m still going through

I have received confirmation via MRI and ultrasound that my ankle has in fact been sprained for six years. My other ankle has considerable damage as well.

Several doctors have mentioned EDS (hypermobile and Classical) to me based on the type of ligament and tendon damage I have

I need to get injections in my ankles and then surgery on the bad one. At least there’s a solution!

Anyways hi I’m back!

[thiefofgenders]

I was talking to a friend and found out this isn't normal for everyone to have so if you're one of the people who don't have an emergency hospital bag, this is your sign to start pulling one together. Hope you'll never need it but make it anyways because if you need it and you don't have one you'll kick yourself. It's designed so if you were suddenly rushed to hospital or had to go to A&E/ER then you or someone you know can just grab it and go. Trust me, it makes life so much easier when you have a bag in an allocated space that anyone can grab for you if you need it. All you need is a bag designed to be hand luggage on a plane. Everyone's is different and it's customisable to you but things I have in mine include:

A list of all my current medications and their dosages

A list of all diagnoses with the medications used for them noted since some medications have multiple uses

A list of any mobility or physical limitations due to disabilities or illnesses

A list of emergency contacts

A list of allergies and what happens when I come into contact with those allergens

My regular doctors and specialists information

A change of comfy clothes including two sets of underwear and socks

Pyjamas that are comfy enough to be in but not too revealing since it's a hospital

Dressing gown (if there's space - if not keep one close to the bag for convenience)

Wet wipes

Alcohol hand gel

Deodorant

Chewing gum

Travel sized toothpaste and toothbrush

Travel sized dry shampoo

Travel sized shampoo and conditioner

Travel sized shower gel

A small tube of hand cream

A small microfiber towel

A plastic bag to keep soiled clothes in

A book to read

A puzzle book with at least two pens/pencils

Headphones/ear plugs

A portable phone charger

Spare phone charger with plug

Small comfort items

Small stim items

An eye mask

A small fan

A bottle of water and some small snacks (no nuts!)

I really encourage everyone to build theirs and regularly check it and update it as needed. Even if you think you're the healthiest person in the world, you have no idea what tomorrow will bring and it's always better to be prepared than left floundering during an already stressful situation. Feel free to add on your own ideas for what people can put in theirs. My list is by no means complete and there's bound to be things I didn't think of

[fibro-memes]

[cripplemetal]

i'm so excited to get decorations for my future rollator! i already have a specific look in mind, and i ordered a few things.

it will have a cup holder! and a cane holder!

so, question to all rollators users: how else can i make it more convenient? like, modifications for additional functions. thank you!!!

[pleastrop]

I say we start treating able-bodied people the way they treat someone chronically ill

"oh? you got ran over by a car so you can't do the groceries? but did you try hard enough? like if you wanted to you could, you're just being lazy. the same happened to my cousin's boyfriend's dad's friend and he's okay, stop with all the exaggeration!! it was just a car, there's people who got ran over by a bus, don't be selfish. did you try doing yoga yet? also, this special herbal tea I saw on facebook will totally cure you"

[chronicpain-itsastruggle]

Guess who just found out I'm not disabled enough to qualify for a lightweight wheelchair through insurance 😃😃😃

I've cried so much today over other stuff and now I get that news 🙃🫠🤪

[nondivisable]

I'm disabled. and sometimes I find myself thinking ableist thoughts. you know what I do?

I stop. I don't say them. and later, I stop again and think. did this thought come from a place of genuine concern or was it just an automatic reaction I have ingrained?

and if it came from a place of genuine concern, how can I actually offer help or a solution without invalidating someone else's experience? if there's no answer to this question, I simply shut the fuck up

this system has yet to failed me

[bluejayqueen]

After matching with a guy on a dating app, we had chatted for a little bit as we got to know each other. I finally decided to just tell him my chronic illness. Not going to details, but just tell him that I have a chronic illness just to rip the Band-Aid off. To my surprise being asked questions about my illness, which was fine. however, he asked the question “does it affect you every day life?“. And at this point I was already scared because I knew that once I answered this things were going to change so I said, “yes it does affect my everyday life.” he immediately unmatched me.Obviously I’m disappointed because my fears came true. I am learning to accept myself, I wonder will anyone else accept me? There has been a little piece of me in the back of my mind who is scared that no man will want me. I don’t need a man. I will be fine without one. But with all this isolation, I can’t help but fantasize about the idea of having someone who loves all of me. I don’t wanna be alone forever.

[moss-opossum]

I had wanted to go on 50-mile bike rides.

I had wanted to get back into rock climbing and swing dance.

I had wanted to go hiking every week.

I had wanted to cook every day.

I had wanted to be a friend people could ask to help lift things.

I had wanted to be able to get my hands dirty, to help people, to make big things and change things.

I still want to work, to help where I can, to make small things; but I’m struggling there, too.

Maybe it was never going to be possible, I’ve always been more limited than my peers even when I was more able-bodied than I am now (though I was never able-bodied). But I miss those projects, those desires, those goals. I miss when they seemed possible, when they were something I could work towards.