#life of a spoonie

[audhd-space]

having to go back to my parents’ home and needing to pack so many meds for over a week

and then realising that you forgot to pack the most important meds

[c0smicberry]

im a pretty quiet person but when im in the kitchen on the line these 30 year old men are scared of me when they forgot to put that fish on 5 mins in the check

[disableism]

Not just related to Michigan, as every state must do reviews.

“In just two months, a bureaucratic review will begin that experts say could cost hundreds of thousands of low-income Michiganders their health insurance — and threaten nonprofit clinics that treat more than 400,000 Medicaid patients across the state.

Beginning April 1, more than 3 million Michigan Medicaid clients will have to prove they are eligible for benefits extended since 2020 under a federal health emergency that barred states from removing anyone from Medicaid during the COVID-19 pandemic. Michigan’s Medicaid ranks grew by more than 700,000 since the pandemic hit.

Federal estimates calculate up to 15 million U.S. Medicaid enrollees could lose coverage during the benefits review, including 6.8 million people who could be booted from the rolls despite being eligible.”

[potsiepumpkin]

When the chronic fatigue is chronic

[disabled-bug]

I’m so proud of people living with chronic health conditions. That shit is HARD. Idk who needs to hear this, but if no one else has said it: I’m proud of you. You’re sticking it out through so much pain and grief. That’s no small feat.

Every small thing you do for yourself health adds up. The grief is heavy and it comes from a place of love. The grief knows the pain is wronging you.

I’m proud of you. I hope on the good days you can be proud of yourself.

Keep going.

[tumble-tv]

"You're always so chipper and excited even though you're in pain, I could never."

Bethany, if I wasn't chipper and excited about the most mundane things like bees and dice, then I would literally be bedrotting all day every day, sobbing because my entire life is falling apart because I have no answers or relief to pain that doctors think is fake. So I will take joy in my trinkets and rollerskating while my body allows because one day I won't be able to.

[spoonie-support]

[squid-socks]

Why is it always up to disabled people to look after other disabled people. Why do able-bodied people feel no obligation to assist? Why do they throw the additional responsibility on disabled individuals. Why is their whole system built on isolating groups??

[s0fter-sin]

something people just don’t think about is how often chronically ill and disabled people just don’t have access to good food. not healthy food, good food; well made, tasty meals that don’t come from a jar or a freezer. how many of us are housebound or can’t drive? delivery services only offer within certain distances, if you live outside a city they aren’t an option. many people don’t have the energy or ability to cook for themselves if they have the skill to begin with. many certainly don’t have the ability to learn how. it’s something that goes completely unnoticed, just the opportunity to have a good meal and how much that wears you down

[somniphobicfox]

This month, shoutout to new mobility aid users. People who've just recently bought a cane or a wheelchair or a rollator or any other mobility aids and are just getting used to them. People who are still figuring out how to navigate in them. It's alright if the aid that you thought would help you actually turned out to be useless/more destructive. Its alright if on some days even your aid cannot give you support. You are still valid, your struggle still real, and I hope you find what's right for you really soon <3

[chronically-evie]

my mom keeps trying to get me to go to the ER when im having a flare up and i have no idea what to tell her.

because ive BEEN to the ER before. you wanna know what they did? while i was sweating, shaking, and sobbing, curled in a ball of pain?

they asked me if i was on my period. when i told them no, they asked me if i was pregnant.

when i told them no, because i wasn't sexually active, they forcibly tested me anyways, and then when it came back negative said, "well maybe you should just take a few deep breaths", gave me liquid ibuprofen, and sent me home.

disabled people, in this particular situation disabled afabs, are never fucking listened to.

the ER staff literally LAUGHED at me multiple times. they pointed at me when i was having one of the worst episodes of my life and snickered.

so no, i do not want to go to the fucking ER. my heating pad, ice packs, and nausea meds are going to help me more than anything a hospital could do.

[walking-loather]

I've always been curious to know this about the people around me. Most people have been in severe pain, but in my experience few have had what they would say is their 10/10 experience. I guess it's just something I find fascinating, as I had my 10/10 experience quite young and I sometimes forget that not everyone has. In my opinion it changes your relationship with pain and how you engage with it afterwards. If you answered yes, feel free to elaborate on your circumstances in the tags!

(reblog for a bigger sample size etc)

[thelupuslady]

[disabled-bug]

disabled people when their disability disables them

[crazycatsiren]

Opioid epidemic this, public health crisis that. What if everybody had access to quality healthcare and pain management so no one would have to resort to desperate and even illegal means for pain relief, imagine that.