#spoonie family

[deliciousbelieverobject]

I'm begging you, pleeeaaase if you live with a physically disabled person and they tell you what would make the living space more accessible, DO NOT SAY "just ask me for help." I don't want to have to ask for your help dumping out yesterday's coffee grounds in the french press.. I want to be able to make coffee without having to ask for help every. single. fucking. day.. Like, why don't able bodied people not understand that asking for help to do every little thing fucking SUCKS?? Also, when I'm upset because my own home isn't accessible, don't get mad at me as if it's something personal towards you.. It has absolutely nothing to do with you. I'm allowed to be mad at the lack of accessibility my disability creates... Don't make it about you.

[c-kiddo]

at one point i didn't like caduceus' epilogue, that he just stayed home for a long time and eventually travelled again and eventually calliope joined him too. but i think actually i love it. something so gentle about him returning home to a temple that was once empty and lonely but is now healing and full of family who he loves so much. and to not have anything particularly asked of him apart from tending the garden and his small routines. especially thinking about how tired and sad he is by the end of the campaign, compared to the beginning when hes so giddy to just be interacting with people and seeing things he's never seen before and to have guidance from the wildmother. and then later, after aeor and so many more horrible things have happened, he admits to calliope that its too much and the outside world is scary and big and he's so so tired and he keeps saying how tired he is. so basically ideal ending that he gets to go home and get better and heal enough to be excited when he heads out into the world again

[youngchronicpain]

Having to ask for help from someone when they are the reason you are flaring is so frustrating. Like! You pushed me to do something I told you I could not do! You put me in a position that I felt like I had no choice! And now I have to ask for your help because I'm hurting so bad. It is unfair. I don't want to have to ask anyone for anything ever again.

[chronicsymptomsyndrome]

As a kid my family used to make fun of me for stuff that is apparently exclusively reserved for “old people” like rolling across the room in a rolly chair to grab something (instead of getting up and taking three steps) or sitting down at a table to do quick food prep like cut fruit or scramble an egg (instead of just standing at the counter for 90 seconds) TURNS OUT what they called laziness was just disability all along haha TURNS OUT I just needed a mobility aid yet here I am today still without one because they gaslit me into believing I was “just lazy” and it took me decades to finally understand that’s not true. haha who knew

[isthe-protag-cluelesstho]

Okay, probably not a hot take, but imma scribble about it anyway,

I honestly think Cale Hetinuse/Kim Rok Soo has chronic pain/fatigue.

Like, everybody loves the whole coughing up blood/wet meow meow thing he's always doing, but personally? People who are that nonchalant about Shit Happening To Their Body, are typically people who are waaaaay too used to Fucked Up Shit Happening To Their Body,

It's just a head canon, but as someone who is chronically in pain, I absolutely do some of the stupid shit CH/KRS does, like carrying stuff I should NOT be carrying, or continuing to Do Things even when I should be sitting and resting. I also know several people who (like me) can be experiencing level 4-5 pain and not show a hint on their face/through their actions besides maaaaybe moving a bit slower/stretching more

And we know KRS has been on his own since he was itty bitty... And then he grew up in a world hell bent on killing everyone. I can't help but think that a tiny child with no one to help him with the general cuts/bruises/little hurts of childhood would 1) have zero frame of reference for what "okay" actually looks like 2) probably has never really received medical care beyond emergency assistance (which does jack for chronic conditions) and 3) has NEVER really had someone in his life long enough for them to catch his way of coping with pain (my very close friends can hear when I'm hurting/tired, everyone else only notices if I am visibly incapacitated)

So, Kim Rok Soo ends up in a world/body that "technically" hasn't experienced his life, HOWEVER fibromyalgia and PTSD are like goddamn pb&j. It's a condition that is deeply tied to a body's stress response. And what does Cale say once he has the Heart? "I feel BETTER"

And that just speaks to me of a person who is so used to pain, that it no longer really registers... I had daily headaches for 7 years, it wasn't until I moved and got a new primary that I found out that more than 4 headaches in a month was considered a concern... I got on some migraine meds and actually stopped having that daily headache, something id just accepted as "how my body works" gone,

I personally don't consider pain at a 1-2 as particularly bothersome, it's more like a general annoyance. Onces it's up to 6-7 it's hard for me to move, and yet I often will still do so, despite the pain. It's only at 9-10 so I stop moving entirely and focus on just weathering it. Usually when that happens, I sleep so much after as my body tries to recover.

And when I read Cale, so casually continuing forward, despite the work he takes on himself, after the constant planning and prepping and ass kicking, all I see is a person who has lived so long with his body's suffering that it's just background noise. Yeah, he coughed up some blood, but the pain is back to "normal" so how can he raise a fuss? He killed 3 monsters with a dislocated shoulder that one time, this? This is easy. And despite claiming his body is weak, he refuses to truly accept the help and rest he needs because (like I used to) Cale thinks "this is just how my body works"

Sometimes, I cannot remember how I lived prior to my pain. Sometimes, I cannot imagine a world where I do not spend half the night attempting to force my muscles to relax, so I can actually sleep. I cannot imagine a world where I am able to do everything I want in a day and not collapse at the end. And I see so much of myself in how Cale continues to move despite the weight of the ancient powers, the expectations of the gods and his own personal hopes. He seems like a character doomed to continue walking, his bones broken but refusing the care because whats the point if everything still hurts the same way in the end?

Anyway, Raon should invent a cure for chronic illness and force Cale into a year long sabbatical

[soup-spoonie]

Similar to this excellent post about how accommodations can clash---

I would love to see more discussion on here about how very often, families have more than one disabled person—if not several.

It's just a whole other level of exhaustion. Asking for help means taking away their spoons. Enduring hours of pain and even a new injury because they absolutely need your help today and they have no one else. Get-togethers get changed/canceled more than they don't. Each of us has a thing none of the others understands, while also sharing the intense bond of going through another thing together. Psychoanalyzing each other's boundaries and our own boundaries even though we try not to. Watching not just abled people but abled families living a very foreign kind of life. Super awkward conversations about jobs and needing money. Weird living situations. Having to manage appointments and phone calls and meds for yourself but also for three other people. Unwanted advice and kindly meant ableism flying left and right. The pain of realizing you passed on a certain gene. Helplessly watching your elders' suffering and being terrified the same thing is already beginning to happen to you.

... and that's when we're being nice to each other.

It's an awful place for a family to be, and there's beauty in it every day. Sometimes it's a depth of compassion other families will never understand. Sometimes it's refusing to answer your phone because you just cannot deal with that person's problems today.

It's real and it's messy and it's just another way we need more nuance in our discussions about chronic illness, chronic pain, and disability.

[voidxbrat]

It's honestly depressing how quickly and easily your (abled) family and friends will leave you behind and forget about you when you can no longer push yourself to try to keep up with them. I hate how focused everything is on going out and doing things when it comes to hanging out with so many people. It's sad how many people would rather just continue on with their busy, typical/abled life and forget about the disabled people in their life, rather than stop and slow down with them once in a while.

[lost-in-azalea-forest]

💊 Hi fellow disabled self shippers 💊

My spoons are a bit low and if yours are too, imagine your f/o being there by your side. They will help you take care of yourself and help you save some energy. They notice if you need water and bring it to you. Their gestures show care, but no pity. They just see you have a worse day and they want to take some weight off your shoulders.

They would make dinner for you (are they a great cook? or are you a bit worried if your kitchen can survive it?) and they would gladly eat it with you. They will spend this day beside you, they want to be there for you, during your highs and lows. Afterwards they remind you to take your meds and help you get to bed. If you want to, they will take a nap with you.

Prosh//ippers plz do not interact PLZ

[cpunkdaisy]

I Was Raised...

...to feel bad about being disabled. I don't think it was ever intentional, but when your pain is questioned and used as a weapon in fights, the you come to hate yourself for being in pain. When you're made to question why you bought yourself a mobility aid, and got it spat on when you didn't see it coming, then you come to develop imposter syndrome.

While the above example are specific from my own life, and the complexities of being disabled in an already-abusive household, I'm sure I'm not the only one who was raised in an ableist-but-maybe-not-knowingly house, in a house where it was questioned and where people refuse to accept that a disability is not a fighting tool.

So, to all the people raised like me, I see you, and I love you.

[fibrospoons]

Sending positive vibes to anyone who is about to have a "tough talk with their family"

Whatever it is about, it's never easy, but I'm so proud of you for being brave and staying true to yourself.

[humanlyimprobable]

Heyy shh shshshshsh don't cry, buy a bulk pack of pierogies (any flavour you like), bake until golden brown, top with sour cream, great value chipotle & ancho hotsauce, honey, and salt and pepper to taste.

Use a spare piece of bread to soak up any sauce left behind.

Ok?

[spoonie-selfships]

imagine your f/o helping you through an apathy/depression episode !

do they just sit with you and hold you close , maybe rubbing your back with their lips pressed against the top of your head ?

do they grab you all sorts of comfort items they know you like ?

do they act all goofy to try and get even the smallest smile to crack on your face or maybe because they don't fully understand whats going on but still want to help ?

do they let you vent to them and truly Listen to what you say ? do they give advice ?

do they look up ways they can help in any way possible ?

do they give you space for whatever reason you may have ?

whatever they do , they do it because they Truly Love you. whether that be romantically , platonically , queerplatonically , familially , in whatever way they love you

they want you to know that shits really fucking rough right now , but they'll brave the storm with you , every second of it

-🐱

[hellyeahsickaf]

Not to keep reminiscing about when I was more abled but man what I'd give to be thinly slicing garlic, onion, tomatoes, throw them in a pot with ghee on medium-high until the onions are translucent and yellowed but not caramelized, and chop some carrots, cauliflower, potatoes, mushrooms, throw them in with some peas and corn and let those cook, mince a green chili pepper, cilantro, and ginger and lime zest, add bit of tomato sauce, then about 4 cups of stock and simmer it on low adding lime juice, a couple of prunes (trust me on this), seasoning it with cumin, cardamom, salt, cinnamon, clove, turmeric, curry powder (most of these spices are in curry powder it's more of a ratio thing), and peppercorn, and then let that bitch simmer for an hour or two until I have curry and throw some naan in a pan with butter, maybe pan fry some okra and make a side of chana masala or dal. No pre packaged meal beats that yknow?

[lobotheduck]

I wish the grief process wasn't incompatible with autoimmune disorders. I lost my mother 5 years ago, and now I've lost my younger brother as well. I'm heartbroken and devastated by this loss, but the grief of it has incited a massive stress response I can't control. I'm fatigued, so fatigued, the joint pain and butterfly rashes are intense every time I allow myself the space and time to breakdown, to cry and mourn like the mammal I am.

Mentally, I've been splitting. I've kept it distant and away, afraid to bring it close--to look at it. I've been trying to work on the eulogy for his Celebration of Life, and I just....it hurts so much.

It hurts emotionally, physically, mentally and spiritually.

[something-existing-somewhere]

It always feels nice to go to my sister in-law's house because I can finally be the favorite uncle haha. At least I can finally be someone's favorite 🥲

[s0fter-sin]

@ my homies with pain disorders, if i described a pain as hollow and feels the way metal tastes, do you know what i mean?