#spoonie? maybe? probably.

[melodymorningdew]

⚠️ CONTENT WARNING ⚠️ mentions of bowel movements.

✨🎶I finally shaaaaaaaat🎶✨

#can't talk right now I'm doing hot girl shit #i thought i was going to die #ibs c #just ibs things #irritable bowel syndrome #disabled #chronic illness #chronically ill #chronic pain #chronic disability #chronically fatigued #fibromyalgia #undiagnosed chronic pain #undiagnosed chronic illness #melody morningdew #stress related illnesses #stress kills #undiagnosed disability #undiagnosed something #pots maybe #pots #spoonies #spoonie #low fodmap #constipated #hypermobile ehlers danlos #probably heds #heds #invisible disability #degenerative disease

[pots-plus-pans]

one of the worst things abt my chronic illness is i almost always find new things that are of concern when doing checkups

like i meet my pots specialist and now there’s a potential for me to have a rare autoimmune disease based off a blood test result that has been low for over a year now

he wants me to retest in 3 months and then ig we’ll go from there

i’m too tired now to put in all the research of trying to diagnose myself, im gonna leave it to my doctors this time

i was able to pretty much self diagnose pots, hsd, and gastroparesis all before proper diagnoses (eoe was an accidental find lol) but this is more complicated so i’m done trying to doctor myself, my own doctor is already on it and looking into it so i don’t need to figure it out in order to advocate for myself which is nice. everything else was bc i had to advocate for myself to be listened to and now this time it was a doctor who brought up the concern so i know he’ll take it seriously

#actually disabled #disability #chronic illness #disabled #chronically ill #cripple punk #cripplepunk #spoonie #cpunk #physically disabled #autoimmine disease #maybe?? #rare disease #so tired of figuring out my body #immunocompromised #probably #shout out to this doctor though #he’s a real one

[s0fter-sin]

i had the weirdest migraine yesterday and my head hasn’t stopped throbbing since, i might be biting the big one lads

#i very rarely get migraines #bad headaches? contantly #but full blown migraines? ive had maybe three in my life and both the others were just the excruciating pain type #this one started out as just a blindspot that i thought was from looking at my lamp #then within twenty minutes the entire outside of my right vision was just fucked #only after that did my headache start getting worse #then i got this freaky half body numbness where all my right arm was numb and tingling #and so was the right side of my lips and tongue and my eye #so j was freaking out thinking my tongue was swelling and couldnt breathe #only reason i didnt lose my entire shit is bc my mums had a migraine like that before #but now i find out that they wanted her to have an mri after she had that migraine #and they were like yeah its probably just a migraine especially since you have a history of them but we want to be sure #so if i have to have a fucking mri after this bullshit #i can NOT be assed #spoonie #coming out of my cage and ive been doing just fine.txt

[cyborgpulsebooks]

so i might also have eds lmao

#it's a maybe but #it makes a lot of sense #talking to someone w a long history of eds today and they did a shitton of like little tests w me and answered my qs #and he was like hmmm yeah probably #cyborg rambles #spoonie diaries #i've never dislocated a joint but i do have subluxations p damn often! and im super double jointed

[scribbledghost]

I know you headcanon ghost with ear loss issues but I also think after so many years of sacrificing his well being for the military I definitely think he has fibromyalgia. As a spoonie myself I think the dealing with constant pain that you really have no control with is a big reason as to why someone retires. Idk I just like to project my issues onto my fave characters but idk what do you think Scribs

I think it's definitely a realistic possibility! Like you said, if we're talking abt Neighbor!Ghost, then I go with the unilateral hearing loss, but fibro could be just as likely. It's another scenario of him keeping it under wraps until he couldn't any more, which would then force his discharge once the higher-ups find out what's going on. Maybe he sleeps through one drill too many due to the fatigue, or he starts requesting OTC painkillers at a high enough frequency to alert Price or the medics that something other than typical aches and pains is going on.

He's definitely got the joint pain and muscle stiffness going for him, and their severity depends on what he's been doing and what the weather's like. He doesn't get much restful sleep, since he keeps waking up through the night. On the worse days, he may even ask for your help to do certain things around the house, because the pain just drains him too much. He's a proud man, but once he lets you in emotionally, even Simon isn't too proud to ask you to go grab his mail because the idea of walking to the curb is more daunting than his last deployment.

I think the control aspect is the worst for Simon, at least at first. The idea that he'll likely be in some form of pain for the rest of his life and that he could do everything right and still have those bad days/weeks gets to him. It'll take time for him to adjust, and a good support system (probably in the form of 141 and his cute neighbor *nudge nudge*) will be crucial for him.

#simon ghost riley x reader #simon ghost x reader #simon riley x you #simon riley x reader #simon ghost riley #ghost x reader #neighbor simon #ghost scribbles

[sabakos]

I think maybe most "normal" people really are spoonies, too but they just don't notice because even if they sometimes hit their limit, they always have enough spoons to get by. But I don't believe that there are really people out there who work hard at their desk job and then can come home and cook dinner and work out and clean their house and sleep five hours every night and are none the worse for wear and never reach the point where they can't do more. I think anyone who tried to do all of this all the time and also support a family and maintain an active social life and hobbies would physically implode before they burned out.

And this ideal non-spoonie just doesn't hold up to observation from anyone I've known with a modestly functional life? Many people seem to eat a lot of fast food and takeout all while telling themselves they should cook more. I think there are probably various parts of their house that are full of clutter or aren't cleaned as often as they would like them to be unless they are rich enough to pay someone to take care of that or have a spouse who does that instead of working. Most days they probably come home from work and do the bare minimum before they decompress in front of the television or the computer for a few hours. This doesn't break anything in their life so they never have reason to think about it, but they've "exhausted their spoons for the day" when they're in this state. They do their adult responsibilities like pay bills on Saturdays and maybe sleep in if they need to, so it all takes care of itself.

I don't think the difference between a "normie" and a "spoonie" is that great though? Someone who always "gets by" like this isn't necessarily that far above someone who is "barely getting by" or "not getting by" and they would never even know it! I think it's a lot easier than most people realize to enter a spiral, where one or two bad weeks mean that for the first time, you've overspent your spoons before everything you need to do is done, which has consequences in the form of stress, from self-blame, or late fees on bills, or general fatigue from not eating or sleeping properly, which result in fewer spoons the next week, which results in more things not getting none that need to get done, and more consequences, and more stress.... you get the idea.

From the outside or the inside it's probably not easy to know this is happening, it just looks like a depressed person suddenly doesn't have as much energy to hang out with their friends anymore or enjoy the things they used to enjoy, or even get out of bed anymore at a reasonable time on the weekends. And suddenly it feels to them like they want to die, because all of a sudden everything started going wrong and it happened so gradually and imperceptibly that it just seems like one day they were broken. They might laugh if they knew how trivial or stupid the initial trigger that set off the spiral was. It might make it easier to claw their way back if they develop a sense of humor about it, and realize that it wasn't "their fault" and that sometimes these things happen. They can happen to anyone, after all.

#brain problems

[snootyfoxfashion]

Spoonie Adventurer Sticker Collection from MJWallaceArts

You probably didn't enter the Spoonie Adventurer life by choice (few would), but whether you have come into this life by illness, genetics, or taking an arrow in the knee, you are now part of an often-invisible, rarely-understood community. You battle against pain, fatigue, and many other unseen foes daily. You understand the fragility of health and the hubris of our ableist culture. You have travelled the dangerous paths of the underdark. Maybe you travel there often, and return to the surface wiser, stronger and stranger than before. It is an unforgiving life, and one that often feels hopeless... but make no mistake, hero. You are a true adventurer. 

x / x / x / x / x

#sticker #spoonie #spoon theory #disability pride #dnd #d&d #dungeons and dragons #cleric #figther #mage #rogue #stickers

[morsobaby]

Gourmie headcanons bc I love that thang

(any pronouns - I don't actually have a hc for that yet)

- Is a spoonie in both the pains and the energies. I imagine when it enters the winded state in game that's bc it needs to restock on spoons, lest the joint ache become terrible and the energy burn out. Food helps but sometimes it just needs to rest and massage those sore limbs. Particularly knees. Needs to sit down every now and then

- If that thing were human (/anthro) it'd use the bear pride flag in accessories. As well as the femme lesbian flag. Because <3 that thing is both. To me. Queen 💜🫐

- Not a gourm exclusive hc but I imagine it has a baby carrying pouch somewhere - maybe it appears when there's pups around to take care of (either biologically related or like. How some animals can lactate even without giving birth. It's like that)

- Would probably enjoy peanut butter cups and kinder chocolate. And perhaps teriyaki chicken

- At pride, it's that person offering free hugs. Or shirtless with a leather vest + rainbow lei

- Would defo get along with Senshi from dungeon meshi

- Likes to stare at wall art and the sky and ponder the depths of the world sometimes, but tries to remind itself that life is now and you need to cherish it while it is. Still, some thinking time is needed occasionally

#my thoughts #Morsos headcanons #Totally not projecting on my favorite critter who just so happens to be perfectly suited for. My own disability symptoms #rw gourmand #I know these are kinda random but I wanted to devote some love to. Gourmie

[spooniechef]

Gluten-Free Chocolate Mug Cake (0 Spoons)

I've been quiet here for awhile, at least in part because it's been a long month or two. There's been overtime at work, which I should not have been doing but because we're understaffed and half the office got sick, I had little choice. Also I went to what will probably be my last convention a couple of weeks ago, which was objectively hellacious but I got autographs from the entire cast of Critical Role so I regret nothing. But of course I came out of that with a serious pain flare and what might have been con crud but was also quite possibly the flu, so that kind of murdered any chance of my being productive the last couple of weeks. But I have this week off and I have some plans. Mostly because I got cookbooks and very much intend to use them.

Side note - I've been contemplating doing a thing to raise money for Fibromyalgia Action UK, and weirdly, my main thought about something sponsored has been "cook through an entire cookbook in 12 months", like The Julie / Julia Project. I came up with that idea least partly because Julie Powell died a couple of weeks ago, which ... I mean, she was barely older than me, what the fuck? But also because cookbooks don't exactly give a chronic pain-friendly rating to its recipes, and part of it would involve doing an adjunct-document with spoon ratings like I do on the recipes here. Still toying with the idea, at least partly because butter and eggs are expensive as fuck. Don't even get me started on the pecans I need for a recipe I got my mother to bring me Jell-O pudding from North America especially to make. Also there's too much that needs buttermilk and that's not so much a thing over here.

Which brings me to today's bit of cookery notes. See, I have new cookbooks, and I've been trying to decide what I want to make from them. I'm having serious executive dysfunction about so much of it, so for the most part I've been sticking with chocolate chip cookies. But I didn't want to do that this time, but there are so many cookies to try. Eventually I got tired of indecision and just really wanted a sweet treat, and one of my cookbooks (Quick + Easy Gluten Free by Becky Excell, which I heartily recommend) had recipes for mug cakes. I'd never tried one, so I figured, why not? I went for the chocolate one instead of the jam doughnut one because I didn't want to use an egg for just the yolk until I found something to do with the white. (Which probably means the next recipe you'll see here is gluten-free cinnamon roll sugar cookies, but anyway.)

So! Chocolate mug cakes! Here's what you'll need:

1 tablespoon vegetable oil

4 tablespoons milk

2 tablespoons caster sugar

1 tablespoon unsweetened cocoa powder

3 tablespoons gluten-free all-purpose flour

1/2 teaspoon gluten-free baking powder

1 tablespoon chocolate chips

I imagine you could replace both the all-purpose flour and the baking powder with gluten-containing versions and have it be fine. But note - no xanthan gum, no egg. You could probably add the tiniest drop of vanilla extract, though.

Here's what you do:

Put all the ingredients in a microwaveable mug; mix well

Cover the mug with plastic wrap; poke a few holes in the plastic

Microwave on high for 60-70 seconds

Let cool for a couple of minutes (the mug will be really hot)

FEAST (they recommend topping it with ice cream and / or chocolate syrup, so maybe do that and then FEAST)

There is no earthly way I could make this any easier. You could probably add various bits of additional flavour - replace the chocolate chips with fudge chips, a drop of vanilla or orange or mint extract, maybe a pinch of cinnamon - but it's pretty well fine on its own. The only thing I can add is that the cookbook says microwave on high in a 900W microwave, but mine is 800W so I just put it in for 70 seconds and it was fine, so maybe add an extra 5-10 seconds if your microwave is lower wattage than that.

So yeah, this is the perfect spoonie dessert, really. If you're having a bad day and are tired and you just want something nice that requires no effort and isn't a £3 brownie? This is the way to go.

#the spoonie chef #recipes #gluten-free #sweets #baking #(sort of baking anyway)

[disabled-stuck]

YAYYYY hi it's me (chronic pain anon) i'm back. had a flareup so i was kind of m.i.a. for a bit but im doing better now~ hope you're doin alright too! i said i would do the highbloods and here i go

terezi pyrope is the opposite of karkat. xe's Aware of and recognizes the symptoms of chronic pain. but whereas karkat refuses to acknowledge it bc it will require him to confront the reality of alternia's ableism in its ultraviolent world, terezi has already performed some Serious mental gymnastics in order to conceal its chronic pain. her being blind, she's convinced herself that since she can compensate, it's okay. the chronic pain, well... if it just doesn't mention it, if xe can ignore it long enough, can push through it, then it shouldn't be a problem, right? terezi can still be a good legislacerator, right? (game over & retcon terezi, having to deal with the consequences of what this mindset did to their psyche: oh no)

vriska serket is in the boat of like. girl Knows that chronic pain exists. Knows that many of her friends have it, including the love of her life terezi, her ex-kismesis eridan, and her ex-pale-girlfriend kanaya. Knows it's a real serious thing, and that it can hurt people to hide it or ignore it. makes maybe a couple distasteful comments about it pre-game or during sgrub, but is much better on the meteor. absolutely helped kanaya & terezi out with their own chronic pain and was a great shoulder to lean on believe it or not. BUT. will NEVER acknowledge her own, debilitating, legitimately constant and really bad chronic pain that radiates all over her left side. shrugs it off as "eh i'm just tough" "nah it's just my battle scars" "i can cope with it". She is just like me at age 16 for real.

equius: love him to death. he is not acknowledging this ever. we are seeing a pattern with highbloods i fear... he just thinks the pain is because of his workouts even though he DELIBERATELY doesnt work out much bc he doesnt think he needs to be strong he just wants to do archery. oh equius i am so sorry. he absolutely registers nep's chronic pain though.

gamzee: again i have no hcs for him i am not. a gamzee fan

eridan: she knows bc he was trying to find sollux on every alternian internet site ever so they could block him on all of them and found sollux on the lowblood spoonie site and was like ... god damn... that's a thing? that's what's happening to me? that can happen in My Gills? What the hell!!! and then tells feferi about it and fef is like oh i have that too lol i've been open about it but eridan truly just was like oh that's a feferi-only thing. i love her unfortunately. anyways then she is more open about it, and she feels comfortable talking about it in front of equius, feferi, vriska, and believe it or not. nepeta!

feferi: INCREDIBLY open about it. gl'bolybg or however you spell that encourages her to be open about how she feels and that includes her pain!!! she will tell you if she feels bad and she will probably apologize for not being able to make it to your party but she Has cut friendships off because people weren't understanding. honestly boundary goals

hiii anon!!!! these are all so so real.

#i'm doing the best i can but pain is killing me 2day haha

[whatifyoulivelikethat]

not allowed, interlude | 20220629

drabble: ‘not allowed’ series; fluff some wholesome BS lol pairing(s): est. relationship yoongi x reader x jungkook

Guess who's favorite noona is addicted to BTS Island: In The SEOM? tbh I wrote this because the game was under maintenance and I was bored lmao

part i | part ii | part iii | part iv | part v | part vi | part vii | part viii | part ix | part x | part xi | part xii | part xiii

--

"Says here that you hate grass."

"I don't hate grass."

"Then why are did you say, ugh?"

Skeptical and slightly peeved dark brown orbs peered at your phone screen. “Hm.” A small frown. “I don’t have any particular feelings towards grass, though.”

“Maybe you made a disapproving face at grass on set before, a staff saw you and thought it was so funny that they added to the game.”

Min Yoongi made his best disapproving face at you. He would never admit it but sweet as SUGA was good at those funny facial expressions that he insisted weren’t only for laughs. You still snickered though. Oops. “How am I supposed to remember every expression I make?”

“Maybe don’t look so disdainfully at grass then.”

“When was the last time you touched grass?” he grumbled in his deep voice, going right back to his phone and vegetative position.

“Look at you, using the younguns’ lingo!”

Those cat-like eyes narrowed into slits. He decided not to grace you with a response to that. He didn’t have one. Probably because he had no idea what you meant, but asking what the lingo was would surely out himself. Therefore, the genius producer meow meow did the clever, strategic move of changing the subject. He did not, however, miss your triumphant grin (that earned you an extra disapproving eye squint). He chose to ignore it.

Yoongi hummed and ticked his eyebrow to your phone. “Do you like the OST?” he asked offhandedly.

“Of course! It reminds me of MapleStory. I always play with the sound on,” you chirped, flopping down next to him on the bed as he grunted in mock discomfort. “I usually have the sound off because most background music is too happy for me.”

Yoongi gave you one of his small smiles that he did when he agreed but still wanted to question. “Too happy?”

“Yeah, sometimes I’m not cheerful, okay, okay? I like this better. It’s soothing and, when you really listen to it, it’s quite layered and intricate. There’s even a sound in there that reminds me of cicadas. Reminiscent of your usual style, too. Ah, but, you should be careful. Lots of game companies are going to ask to collaborate with you now!”

He laughed softly and, from the tone and the bashfulness, you could see he was very pleased. It was both what he wanted to hear and that he could see that you meant it. When you enjoyed things, you always had a lot to say. “Couldn’t be too cheerful since you might be annoyed after being unable to complete a level – wait, what level are you on?!”

Your phone flipped as you tried to squirm away from Yoongi’s wide eyes once he finally registered all the information on your screen, looking quite like his BTS Island: In The SEOM game avatar. So far you had been incredibly impressed by the game developers’ attention to detail, from the avatar expressions and movements, the accurate dialogue, even the aesthetic color choices. Oh, and can’t forget those spoony-looking hands and little nubbins for legs that hung in the air when they laid down. Clearly a lot of research and efforts had been put into it. You would be ready to discuss all of it if it wasn’t for the fact that you were sputtering, trying to explain yourself as the front door opened, and you heard heavy things dropping.

“Hey, hey, have you downloaded the game, hyung, I set up my island and everything, let me show you and – oh, noona! You’re here already!”

You grinned at Jeon Jungkook and his wild, slightly messy workout hair. Wow, those big sparkly brown eyes really were the biggest peepers of all. How long had the game designers been staring into the Golden Maknae’s eyes? Couldn’t blame them, though. He looked a bit like a black fabric mountain in his loose clothes as he bounced over, clutching his phone to load up the colorful opening screen.

“I’m about level seventy, what about–?”

Yoongi grunted.

Aw shit.

“She’s over level two hundred.”

“You’re over level WHAT?” Jungkook’s booming volume filled up the entire bedroom. The Golden Maknae had some powerful lungs on him. Needed them for those high notes. “How?! I thought you had a job!”

“I do have a job, excuse you–”

“What you have is an addiction.”

Jungkook had now taken your phone. “You have so many stars! You haven’t even done the story!”

“Er…”

“Why is your island so naked? You need some decorations.”

“Decorations cost money.”

“I have lots of decorations, look.”

“Yes, but you also have money.”

“I can give you money.”

“You are not being my suga daddy in In The SEOM. Besides, I want to kick your ass without money. Ohohoho, I knew you would spend more time decorating. Aww, Hoseok looks so cute in those sunglasses you put him in!”

“That’s not allowed, noona! You said you’re good at puzzle games!”

“This isn’t a competition, you two. This is a healing game…”

“Maybe you should try harder, Jungkookie~!” You gasped dramatically as you explored his account on his phone. “Your future wife is in your club? Did you peel apart perilla leaves for her? Is that how it happened? ‘Today a perilla leaf, tomorrow marriage.’ Gosh, I told you that was dangerous!”

“Noona, you!”

At this point Yoongi had given up on his bed, getting up with a sigh as you and Jungkook began to roll around laughing and bantering about each other’s islands. Later, Yoongi would tell you that it looked both like a fight and as if you were trying to strip reach other, so nothing to worry about. Per usual. He watched the debacle with fond amusement.

“You used to be quiet,” Yoongi chuckled.

“Well, you used to be available,” you called accusingly from the bed with your legs around Jungkook’s waist as he pinned your arms to your sides. “Then you discovered Pilates and started practicing English.”

“You could practice English with me.”

“I know plenty of English,” you wheezed, yanking up the black shirt. Jungkook yelped as your bare thighs touched his skin and you rolled him back over to be on top, only to be lifted far too easily. Damnnit! You let out your own yelp. “Such as–”

“If you sing Butter one more time, I’m getting a gag.”

“You don’t own a gag, hyung?” Jungkook questioned with a confused expression as you flailed about in the air like a caught (super) tuna.

“Why would I own a gag?” Yoongi sighed exasperatedly, eyes and mouth thinned into lines. Actually, there was a slight upturn to his lips. Hm, quite like a cat.

“I dunno, you kinda seem like you’d own a gag – ah! No bitey!”

“What are you reading online, hah…?”

-

“It’s under maintenance…”

“Aw, man, what now?”

Those big peepers looked your way.

“You looking a lil sus…”

“Can you two speak like normal human beings? What are you doing to my shirt – oi!”

--

drabbles masterpost | masterpost

#yoonkook x reader #jungkook x reader #yoongi x reader #yoonkook x you #bts idol au #jungkook x you #yoongi x you #jeon jungkook x reader #min yoongi x reader #jeon jungkook x you #min yoongi x you

[quietlywatchingwritingreading]

I have seen multiple people compare Royal Margarine cookie to Gaston. I don't really see it? He is not remotely like Gaston. Maybe appearance wise, but he's not done anything remotely like him.

You know who he does remind me of?

He reminds me of Edward Chris von Muir from Final Fantasy 4. More commonly known as ‘The Spoony Bard”,(Given that name by a father who’s daughter ran away to marry Edward) . Edward would frequently run away from battle, and one of his commands was for him to hide while the other characters who did all the fighting, and was known for being a bit of a sweet talker.

I also get hints of Zidane from FF9. Who was also working in a theater trope, but was a thief, and a flirty character.

I just sorta, wanted to throw that thought out there. There's probably other characters that he reminds me of. Basically every single 'flirty bard' trope, just mixed in with the 'Mounted Warrior who has a strong bond with the creature he rides into battle'

#cookie run #royal margarine cookie

[crittermakingthings]

Welcome to my art blog where I will be showing you things I make and sometimes things other people make!!!!! My arts and crafts tend to be miscellaneous projects, and I like making things with my hands. My works usually end up being naturecore things and fandom/band stuff.

Currently extremely hyperfixating on The Mechanisms, and also hyperfixating on The Forgetmenauts, The Magnus Archives, and Team Starkid (again lol, NPMD dragged me right back in). Other fandoms/bands may appear, especially ones that overlap with my fixations! Will update/change said list as necessary.

Other art stuff will probably be nature themed crafts (because those are my favorite to make) and possibly some punk DIYs! May as well dump my battle/patch jacket progress somewhere after all :)

My main is @rocksanddeadflowers where I reblog everything and post fandom stuff.

Figured out tags!! Stuff I made will be tagged as: #critter made something (Edit: might starts using "#rocks made something" since that's the name I use on my main? Just so it's less confusing? Idk we'll see :) )

And reblogs will be tagged with: #other people's art

Edit: forgor to mention but FAIR WARNING I am a spoonie so inconsistent posting my beloved :) maybe I won't make something for half a year and suddenly art dump one day and burn myself out. An endless cycle :)

[justablah56]

gothweebcleats anon is drinky again (that Was me last time!!)

thinking abt the post-eldritch-chronically-ill!scary (yes i’m referring to that post) and cane!taylor (my personal favorite taylor as a cane user myself) and taylor helping scary with her bones sitting funky

like!!! okay so for reference i have fibromyalgia and i feel like “nerves on fire for no reason” is a good substitute for eldritch horror ya? so scary sitting in class one day with her dull pain that has been there for a while now (what is it she’s so confused she hasn’t been in this much pain in Ever) and the pain just. gets worse. and it continues to get worse

taylor is the first to notice because hey! he Knows what a lagging body looks like he looks at one in the mirror Every Day

cue taylor pulling her aside somehow and being like. hey. u good?

and scary being like no. No I Am Not I’m Really Really Not (because this is post doodler adventures and she’s healing we love women) But I Don’t Know Why. Help

so taylor asks her what’s going on and (being in the spoonie community himself) is able to come up w some stuff that could help!!

he invites her over to his place and just. idk maybe i’m in the mood for hurt/comfort but he helps her out with her pain. runs her a bath and gives her ibuprofen and makes her tea that his mom always makes him (it’s no where near as good but scary thinks it’s probably the best she’s ever had)

linc is watching garfield or smth idk she’s vibing and we love them for it (when linc finds out about scary’s hurts he brings her macaroni and soup and taylor and they have days piled on one of their beds eating snacks and watching movies i’m so fucking normal abt these three)

sorry for the novel the mike’s cranberry is fueling my fingers

anon holding you so gently in my hands never apologize for writing novels on my inbox I am absolutely delighted <3333 but ough yeah , cane user taylor is soooo important to me and then plus chronic pain scary bcs fucked up doodler-ness !!! but ahwbndjs scary not really knowing why she's in pain but not really bringing it up but taylor recognizing it and deciding to help her bcs he knows what thats like (and it has nothing to do with the fact that he actually cares about her shut up) but swhbdjd taylor inviting her over and doing all the things his mom does dor him on bad days 🥺🥺 beloved !! and Linc also finding out and just doing what they can to make scary comfortable 🥺 I love them your honor

#gothweebcleats anon #theyre literally so beloved ty ty

[howtobeapersonwithfibro]

Music asks: 16 and 18!

Why is it so hard to search for posts on my own blog ahhh

I found the music ask post finally

16: tell us the name of a song that most people probably don't know but you absolutely adore

"my body hates me" by blu eyes. I've raved about this artist before she her music definitely has spoonie/trauma-survivor vibes

18: how important is music to you on a scale 0-100?

hot take but. only like 60ish? maybe even less? I love music and it makes me feel things and I sing and play guitar but a lot of times I'm just home and I kind of forget it exists and I have so many other interests (writing/reading, visual art) that I'm alright without it lol. I also have sensory issues and would most often prefer silence.

thanks, this was fun!

#music ask game #ask game #asks #my post #about me

[larjb3]

Okay so something that is really important that a lot of able-bodied individuals don't realize, is that when you live with any sort of chronic illness, whether it be physical or mental, you often have to do your own research on your symptoms. If you don't, doctors are going to dismiss you. If you're lucky you'll get maybe a CBC panel ran. If you're like me (and from what I see online, many other spoonies), your chronic illness (fibro) will be blamed for your symptoms and you'll be forced to move on. That could be in the form of finding a different doctor (which is SUPER hard to do in the US because of insurance restrictions, and that's assuming you're lucky enough to have insurance) or by accepting their answer and just coping with the new symptoms.

I write this because I have had abnormal blood counts for the past almost 2 years, and abnormal body feelings (clearly swollen and painful knees to the point where I have seriously debated on if I needed a mobility aid like a cane, Baker's cyst, yadda yadda yadda) for roughly 1.5 years.

Anyways, at my last doctor's appointment in...May? June? Something like that, I had to go in to the doctor with my previous abnormal blood counts, dating back to when I was living in a different state, even though they had the records from that state because EHRs are a thing, because they weren't helping me. I had to go in with possible explanations and explain why I was considering them, and why I ruled them out. I had to go in to a doctor who was ADAMANT that all I needed was physical therapy and then I wouldn't be in so much pain. Keep in mind here, that I experienced pain when sitting. I experienced pain when lying down. I experienced pain when standing or walking. I experienced a TREMENDOUS amount of pain going from sitting to standing or standing to sitting. It was to the point where, on the pain scale, I was at maybe a 7 or 8 on a daily basis? And that's going off of my pain scale, which is drastically different from the "average person" pain scale because, surprise, I live with chronic pain. So in general my pain (prior to all of this) is at maybe a 1 or 2 on my pain scale? That translates to maybe a 3 or 4 on the average person pain scale? So now instead of downplaying how much pain I'm in (I mean, I still probably downplay it just because of internal feelings about needing to not be a burden on others and not make my needs so prevalent that it inconveniences anyone else), I have started adapting my answers to what I think an able-bodied individual's pain scale is (never been fully able-bodied, so who even knows how accurate that is).

So back to the point:

Yes, it may have been the fact that I started crying in the doctor's office because I wasn't feeling heard or taken seriously, or it may have been that I did my own research, came in with possible answers (through reputable sites - so not fricken WebMD), and came in with all of my abnormal blood levels since they started almost 2 years ago.

BUT, with all of that said, that was the only way I was able to get any sort of medical intervention. Sure, I could've upped my meds more, but that's not looking at WHY I'm in so much (non-fibro) pain. That's not explaining WHY my joints are swollen to the point where it hurts to walk. That was the only way I was able to get an order for a CT of one of my knees and new bloodwork ran. And - surprise, surprise - they found things. They found a possible reason for why one of my knees was acting up (still had the problem of the other knee, but whatever. One knee taken care of is helpful). They found inflammation in my blood (and if you tell me fibro is a fricken inflammatory disorder I will probably rage quit your comment, because that's what a hematologist decided to say, clearly knowing nothing about the disorder and instead telling me that "fibro" meant "inflammation". No, "fibro-" means "relating to or characterized by fibers" and "-myalgia" means "pain in a muscle, or group of muscles". So don't come at me with that).

Anyways, what I'm really trying to say, is that if you or someone you know is not fully able-bodied, we often have to do our own research. Why? Because 1) medical doctors often don't take us seriously, 2) we know our bodies better than anyone else regardless of degree status, 3) medical providers seem to not like actually looking deeply at a case and let's face it, if you just went through however many years of medical school and had to conceptualize endless cases, you wouldn't want to do in-depth analyses of cases either, and 4) how else are we going to know what questions to ask if we haven't looked up possible reasons for our symptoms or bloodwork or whatever it may be?

Believe your non-able-bodied friends. Believe your spoonie people. We know how to research conditions and rarely stop at just one website (just because conditions are usually more complex than just a common cold or something). We are doing the best we can in a broken system where no one wants to believe us.

And for those spoonies/disabled folx, if your doctor refuses to run blood tests or imaging or whatever it may be, make a FIRM request (more like a demand) that they write IN YOUR CHART that they declined to do whatever it is you are asking them to do, so that there's documentation and they can be held accountable. I have yet to do this, but from what I've seen from other people, medical professionals don't like writing that they denied something, so they tend to then send in the order.

#larjb3 #spoonie #spoonies #fibro #fibromyalgia #mystery diagnosis #mystery diagnoses #chronic illness #unknown illness #medical problems #abnormal blood work