Me: Ive Been Bedbound For Six Months

hi, i want to share stuff about my life with chronic migraine and other health struggles. i'm still in the process of getting diagnosed for the latter, but strongly suspect that it's mecfs. a few weeks ago my condition got worse and i feel very isolated so here i am.

what if ablebodied people believed disabled people when they said stuff exhausts/hurts them, even if said ablebodied people didnt understand or couldnt relate. lol

visibly disabled people will present others with the most basic and easy to understand request like “please don’t talk to me like I am a small child” and in response people will just start monologuing about how difficult and confusing this is for them and how they’re doing their best and how they need patience and understanding too and it’s so fucking tiring lol

If you've ever told a person who's had to be bedbound for a period of time that you wish you could "just stay in bed", DO IT.

Stay in bed. For days. But don't get up if someone needs you to, or you get bored, or you get antsy. Don't do anything other than rest. Just lie in your bed, whether you need to get stuff done around the house or socialize or anything else "productive". You'll have to cancel on people, you'll disappoint them, they won't understand.

And if you're thinking, "well, i CAN'T just be in bed. There's stuff that has to be done - I have plans", maybe ask yourself why you assumed a disabled person doesn't have plans or things to do or desires.

Why why why do medical professionals so insistently push people with chronic pain to “just push through it.”

I’m in a flare right now and my left hip has been hurting no stop for almost three weeks. My physical therapist knows this and I reminded her last time I saw her. So tell me why she proceeded to have me do a bunch of jumping exercises landing with all my weight on my left leg.

I told her the exercises were hurting a lot and she told me to just work through it. Well it’s been half a week and ever since that appointment my hip has hurt even more than before.

Sometimes, I still feel so able bodied.

Like the aches and pains are quiet for just a moment long enough for me to remember what freedom I used to have. It's almost like if I yearn for it hard enough, I can have the old me back. The me that could still achieve all my dreams. The me that had no idea what was coming and how much it would all cost me.

Somedays, I still feel the urge to live the way I could before. Carefree and boundless. God, I can almost taste it.

Had an appointment with my neurologist today. Guess who went there with a stupid spark of hope to be taken seriosly this time and ended up crying ugly in the parking lot 🙃🙃

Regular reminder you don't owe anyone information about your health, disability, or medical treatment. You have the right to provide as much information as you are comfortable with and no one is entitled to more.

doctors hate her! This woman is experiencing symptoms that might point to a health problem and wants doctors to do something about it