#chronicpain

[tumble-tv]

I paint my nails for accessibility and accommodation. Why? I am legally blind in my left eye and almost blind in my right. When I don't have my glasses on, I can't always tell where my fingers are when, say, making a sandwich or picking up chapstick.

So, to solve the problem of not knowing where my own fingers are in a space, I paint my nails in colors that stand out against my skin. Black is usually my go-to, as it's as much contrast as I can get, but sometimes I branch out and experiment with how colors are against my skin and common surfaces. Currently, I have alternating pink and blue (like Jinx from Arcane, since I already have blue hair), but I've also done red and purple. Black is the most helpful, but pink and blue is fun and works almost as well!

[myalgicencephalomyelitiscfstom]

[i-say-stupid-things]

what is it with able bodied people saying “get well soon” after you say that you’re chronically ill?? like? i am not gonna? and i once literally responded with “i’m not gonna, it’s chronic, as in permanent.” and they went like “oh well, hope you get better!” like bro 💀

[chronicillnesshumor]

[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.

[eulogyfornobody]

Why are you harbouring resentment towards yourself for doing the best you could do given your current situation?

[pumpkinspicedmochi]

Stretching isn't enough need to take my spine out and wring it out like a towel

[dizzy1ife]

There is a highly irritating ghost standing behind me, just stabbing me repeatedly.

[neurodivergentbraingoblins]

This post is a shout out to all my chronically ill friends ❤️

"If you are in that much pain just go to the emergency room" 🤣🤣🤣 no, just no. The ER does not do what most people think it does. It exists for people who need to be stitched up or suddenly broke a bone. They do NOTHING for pain management and actually will verbally harass patients for going in and wasting their time. I know. I've been one of those patients harassed by the people who are supposed to help me.

"They gave you a referral to a specialist right? Are they going to see you next week then?" - it took 3 months for me to get an appointment with Neurology after getting the referral. Genetics took 2 months, cardiology was a month, and I'm still waiting to hear back from St. Louis about seeing a neurologist there (that referral was put in on August 9th). It takes months to get in to see these doctors, then they spend about 5 minutes (10 if you're lucky!) talking OVER you. Every visit is a fight against the doctors ego to see if you will actually get help this time.

"Maybe you should go to Mayo Clinic or some other place out of state!" - cool, who is going to take me? Who is going to take a few weeks out of their own life to drive me there and stay with me while the doctors do their thing? I can't see so I can't drive myself. I haven't worked since July because of being sick, so I can't afford a ride or place to stay.

"Can't you go a couple days without medication? I know the pharmacy ran out, but it really can't be that big of a deal right?" - I don't even know how to respond to this one. Seriously? The doctor put me on the meds for a reason. Most of them have serious and dangerous side effects when you go through withdrawal. Also depending on how long I'm without them, I have to start back at a lower dose and work back up to the dose I was originally on. Which means TWO prescriptions that I now have to pay for.

"Do you really need to bring your walker/cane with? It's annoying to try and get it in and out of the vehicle. Plus it just slows us down" - do you really need your legs with? It's annoying having to wait for you to put your shoes on. Plus when you wear those specific shoes you walk weird. If you can't stand someone using a mobility aid to help them get around then go find a new group of friends to do things with. I have just as much of a right to be able to go out and enjoy things as anyone else.

There are plenty more things I could add to this post but I'm exhausted.

[layla99999999]

me: *throwing up from pain* *literally in chronic pain* *struggles to get out of bed* *body feels like it's actively dying* *genuinely scared that i will die because of how bad the pain is* *can't even think about anything other than pain*

people around: YOU LAZY BASTARD GO TO WORK YOU ARE SO EGOISTIC STOP MAKING THINGS UP FOR ATTENTION I WISH I COULD ALSO STAY HOME ALL DAY DOING ABSOLUTELY NOTHING BUT THIS IS NOT HOW LIFE WORKS YOU CANNOT BE SO LAZY

[tumble-tv]

"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

[myalgicencephalomyelitiscfstom]

Warning: Contains the F-word

[i-say-stupid-things]

psa: you actually are worth it. you are worth the trouble. you are not too much to put up with. your disability doesn’t make you unlovable. you’re not too much of a burden to “put up with”.

you are amazing and lovely and the right person will come and see just how wonderful of a person you are. your disability changes nothing about that

[chronicillnesshumor]

[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. take a break a task if you've been doing it for a while. have a small snack to see if you're hungry. etc. etc.

[eulogyfornobody]

Constantly torn between “I can’t let this illness ruin my life” and “I need to listen to my body and let my body rest”