The body isn't body-ing

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.

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”

K yall im tired and in pain and also curious.

Pick one. Yes, just one, I know it’s hard.

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

Warning: Contains the F-word

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.

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

My visually impaired friend can’t read this stuff. So I fixed it up just for him to be able to read it! :) 

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

you can trust the signals your body is sending you. whatever physical symptom you're experiencing is real. your pain, fatigue, weakness, numbness, unsteadiness, malaise, dizziness, nausea - all of it is real. i believe you. even if you, doctors, friends, or family dont. i believe you.

you should have never had the idea that you cannot be the authority on your own body put in your head. you are the only person on this planet who can convey what you are going through. no one has the right to take that from you. please believe in and advocate for yourself. and know you deserve to have someone advocating for you, too.

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

there is so much wrong with this that it gives me a headache

just like..everything about this wrong, not all disabled people are the same, this is the second comment I saw that was just straight up ableist ..before this one its funny (not really) that someone legit said basically fuck disabled people when it comes to employment ("its not my job to help you/give you a job!" and saying "if you don't look at me in the eyes or fidget much then no job for you!") and then on a DIFFERENT subreddit I see this , fuck both those people and the people who upvoted it wtf..its so sad to see the lack of care and empathy for disabled people and bad when its like they talk like they know for a fact..loud and wrong , it reminds me of when other disabled people go "well I have the same disability or I'm 'worse' and you just have that problem so you should be able to work".

white knuckling my desk

it’s okay to use mobility aids, it’s okay to accept help

it’s okay to use mobility aids, it’s okay to accept help

it’s okay to use mobility aids, it’s okay to accept help

it’s okay to use mobility aids, it’s okay to accept help

it’s okay to use mo-