#Spoonies

[edenfenixblogs]

Spoons are out. Tickets are in. (/lh)

My mom is disabled from chronic pain and back issues and I was trying explain spoon theory to her.

And she said “who came up with spoons? That’s dumb.” And I said “I dunno. I don’t think it’s supposed to matter. The point is that it’s currency and you have a finite amount.”

And she said “That’s dumb. Tickets are right there.”

I asked her to elaborate.

She said that your activities are carnival rides and you’re at the fair and you only have a certain number of tickets and if you don’t have them you simply cannot ride this ride”

And I said “ok yeah that obviously works too”

And she said “yeah. I’m smart.”

And has been referring to tickets for two weeks now.

She also wants me to add that spoonies, in her new extended metaphor, are now called ticket-holders. LOL

CC @will-write-for-food

[spacedocmom]

15/04/2025 Doctor Beverly Crusher @SpaceDocMom Incoming Transmission…

One of the trickiest parts of my job is to convince health-privileged people that the things they imagine as "healthy living" and are thus "keeping them healthy" are more steeped in that privilege than in actual health science. Correlation is not causation. emojis: black heart, blue heart, masked, spoon

[myalgicencephalomyelitiscfstom]

[lifewithchronicpain]

Mari Villar was slammed by a car that jumped the curb, breaking her legs and collapsing a lung. Amy Paulo was in pain from a femur surgery that wasn’t healing properly. Katie Kriegshauser suffered organ failure during pregnancy, weakening her so much that she couldn’t lift her baby daughter.

All went to physical therapy, but their health insurers stopped paying before any could walk without assistance. Paulo spent nearly $1,500 out of her own pocket for more sessions.

Millions of Americans rely on physical and occupational therapists to regain strength and motor skills after operations, diseases, and injuries. But recoveries are routinely stymied by a widespread constraint in health insurance policies: rigid caps on therapy sessions.

Insurers frequently limit such sessions to as few as 20 a year, a KFF Health News examination finds, even for people with severe damage such as spinal cord injuries and strokes, who may need months of treatment, multiple times a week. Patients can face a bind: Without therapy, they can’t return to work, but without working, they can’t afford the therapy. (Read more at link)

That’s been my experience. They just expect you to continue on your own but it’s not the same and so hard to commit to without the appointments.

[seafearing]

watched this short documentary on man whose doctor never got back to him about his test results and only realised it 2 years later. that cancer would have been curable had it not taken the 2 years, so then he died. because of paperwork

and it's the most blatant disturbing heart-breaking example of my motto which is, never trust the doctors. they are over-worked and under-staffed. you got two tests done and never heard from the other? chase it. ask your doctor, have you had both the results in?don't assume that the doctor will do their job

and i'm not saying it is this man's fault that he died: of course he's going to assume that doctors do their jobs. of course he's going to believe it when the doctor says he's good to go home

just like i believed it when my doctor told me that i had chronic sinusitis. that misdiagnosis of trigeminal neuralgia triggered by skeletal malocclusion delayed my treatment by a couple years, making the pain chronic

so then years later when i actually looked back at the results of the x-ray they took of me right at the start, the notes said that there is no evidence of sinusitis. that my sinuses are completely healthy. my doctor just hadn't looked at that, and merrily she went misdiagnosing me, referring me and making me queue up for a year for my healthy sinuses

don't trust them. read every test result yourself. chase everything yourself.

[cemetary-shifts]

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”)

[chronicsymptomsyndrome]

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself through if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3

[spookietrex]

[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.

[chronicillnesshumor]

[fanon-and-canon]

"you always have something wrong with you"

well yea, no shit. its like im chronically ill or something

[wheelchairbarbie]

[myalgicencephalomyelitiscfstom]

[disabledfrogs]

Disabled people don't owe you a diagnosis. Don't ask "what's wrong" there's nothing wrong with me I'm just disabled. You're a stranger, why would I tell you something that should only be between me and my doctor?

[lifewithchronicpain]

If you don't need a cane, but you get one to signal disability because sometimes you get faint and need to sit, or whatever, as a cane user for years, go ahead. Please, if it makes claiming accomodations easier for you, even if you don't need it to walk, I don't care. This is your permission if you needed it.

Can I suggest that you can get a foldable one at CVS (they're great) so it's there when you need it? Shits fucked up, do what you need to do. Just beware there are assholes that won't care about the cane. But overall, it does make things easier and is easily purchased. Go for it.