#spoonys

[butchboylesbo]

able bodied people will freak out when they see an ambulatory mobility aid user not using their aids but won't question it when a hiker only uses a walking stick or trekking poles when they're hiking. they're the same thing.

[indelibleevidence]

People with low spoons, someone just recommended this cookbook to me, so I thought I'd pass it on.

I always look at cookbooks for people who have no energy/time to do elaborate meal preparations, and roll my eyes. Like, you want me to stay on my feet for long enough to prepare 15 different ingredients from scratch, and use 5 different pots and pans, when I have chronic fatigue and no dishwasher?

These people seem to get it, though. It's very simple in places. It's basically the cookbook for people who think, 'I'm really bored of those same five low-spoons meals I eat, but I can't think of anything else to cook that won't exhaust me'.

And it's free!

[sidras-tak]

Accessibility takes too goddamn fucking long.

My brother was paralyzed in October 2023. We got him home from the hospital (in Texas, when we live in Iowa) in a clunky old hospital chair. He hated it. He was scared and angry and in pain and his life had just changed forever and he couldn’t do anything for himself in that wheelchair. His first goal (aside from learning how to transfer) was to get a wheelchair. My family was lucky enough to afford one so we thought it would be easy enough. Nope.

We couldn’t buy him a wheelchair. He needed a prescription. For a wheelchair. A doctor had to examine him and declare him in need of a wheelchair. It wasn’t good enough that he had scans and tests showing tumors cutting off his spinal cord. He needed his primary care doctor to examine him during a physical and write a prescription. He was making 2-4 transfers a day, tops. He had no energy to get to a doctor. Home health was in and out every day. He had no time to get to a doctor. He didn’t get a prescription for almost a month. Then it had to go through insurance.

We asked if we could skip insurance and just buy a wheelchair for him. Nope. They wouldn’t sell us one, not even at full sticker price. It needed to be approved by Medicare. We ordered a wheelchair, a nice one, a good shade of green, sporty, small. It would let him move around the house. He would be able to cook, to reach drawers and get stuff from the fridge and brush his teeth and put his contacts in at a sink. We were told it would take awhile, maybe two months. Silently we all hoped he would be around to see two more months.

He went on hospice care on a Saturday in March. On Monday, I was calling his friends to come see him before he died. I got a call on his phone. It was the wheelchair company. They were about to order his wheelchair, she said, but there was an issue with insurance— had he stopped being covered by Medicare? Well, yes. When he started hospice care, he got kicked off Medicare. The very nice woman I talked to told me to call her if he resumed Medicare coverage so she could order his wheelchair. He died less than 12 hours later.

We ordered that chair for him in early December. Medicare didn’t approve the order until March. He was dead before they got around to it. He wanted that fucking wheelchair so badly. The only reason he had any semblance of independence and any quality of life for the last five months of his life was because the wheelchair company lent him an old beater chair, a very used model of the chair he ordered. If I could go back and change one thing about his end-of-life, I would get him his dream wheelchair. He told me again and again he couldn’t wait to get it, so that he could feel like a person again. He made the best of what he had with that old beater chair, but it still makes me mad to this day. He was paralyzed. He needed a chair that afforded him dignity. We had the money for it. And yet, we were left waiting for five months, for a chair that wouldn’t even get ordered until the day he died.

[thedisablednaturalist]

Kinda fucked up that we all coo and sympathize with "former gifted kids" but never talk about the students who had to stay late after school or over the summer for remedial classes/clubs, who struggled to get above a C, who were given up on or punished. Who tried so hard to understand or just couldn't. Who were grouped with the "stupid kids" (a classmate called us that in remedial math btw)

Autistic kids and adhders who can't relate to their gifted peers and are constantly alienated by them. Kids who struggled in school due to dealing with a chronic or mental illness or physical/learning/developmental disability. Those of us who have had to drop out of highschool or college. Kids who worked so hard and wanted to be seen as smart, but never were. Who watched as their peers seem to fly by them in school, while they were left behind. Who were bullied and put down by those in the gifted and honors classes. Whose confidence was absolutely destroyed by education.

I love you all and I'm so sorry the school system failed you. I'm sorry you weren't properly accommodated and given the education you deserved. I'm sorry people put you down for something that they never had to fight for.

[chroniclesofchronicillness]

This makes so much sense

[nondivisable]

"everyone should care about accessibility because most people will become disabled at some point in their life" is a logical argument and I understand its popularity

however, everyone should care about accessibility because disabled people are fellow human beings living in the same society as you who deserve the same rights as you

thank you good night

[londonspacegirl]

Mine earlier.

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[versicolour]

just a kind reminder to please be kind to the people you know with gastrointestinal disorders/conditions! they're embarassing, often very painful - sometimes debilitating - and very hard to talk about without oversharing a lot more than most are comfortable with.

if someone you know:

- spends a lot/long time in the restroom

- has a colostomy bag

- requires diapers or similar implements

- experiences a lot of gas and/or bloating

- requires tube feeding or other alternative methods of nutrition

- has food restrictions (e.g. cannot handle a lot of spices, certain proteins, etc.)

- eats a lot, or only a little

or other similar factors of their life...

please be patient and understanding, it's hard having guts that really like disagreeing with you!

[certifiedgoofball]

i hate when i, a completely healthy person (very chronically ill), get sick (flare up) for no reason at all (i exerted myself way past my limit just cuz i didn’t wanna be “annoying”)

[chronicillnesshumor]

Comic by howbabycomic.com. Perfect for people with chronic illnesses and disabilities

[myalgicencephalomyelitiscfstom]

[positivelyqueer]

hi, you there who are or are thinking about spending all day in bed, it’s okay, I’m not telling you to get up. I’d just like to do a quick check in to make sure you’ve got everything you need to be comfortable and safe.

Have you gotten up to take any meds you need?

Do you need to open or close your windows or curtains/blinds to make your environment nicer? (Fresh air, keep the cold out, sunlight/darkness)

Do you have a water bottle or a glass of water easily accessible? (Can also be juice, cordial, a meal replacement drink or anything else)

Do you have any over the counter or prescription as required meds you might need, like painkillers or anti nausea meds?

Is your phone or laptop charged?

Are you wearing comfortable clothing?

Do you have enough blankets/pillows to be warm and comfortable?

Do you have any snacks like fruit or chips or muesli bars in case you can’t get up to make a meal?

Are you able to change positions in bed (or sit up if you’re able)?

Do you have any regulation tools like fidgets, ear plugs, or journaling/art books or low energy hobbies you might want?

Are you being gentle and patient with yourself and your body today?

Thanks for doing this check in with me. I like to have some of these things prepared on my nightstand, or all together in the same space in my room so I don’t have to do as much work on low energy days. It can also help to have someone else prepare or get these things for you if you’re unable. Hope you have an uncomplicated day.

[fibro-memes]