#spoonie feels | Explore Tumblr Posts and Blogs

otpcutie · 3 months

Text

It feels so good to be reading again!!

#it’s a DC comic if anyone’s curious!!#I tend to be so hyperfixed on/wrapped up in writing that my other hobbies fall by the wayside #tryna do them more too #& reading is also the least painful one for my hands🙏🏻#making myself take a lil writing break to rest them after finishing All In <3 #otpcutie talks #spoonie feels

10 notes · View notes

chronic-this · 2 years

Text

Them: “Stress and anxiety are only going to worsen your condition. So stay calm.”

Me: “Okay…” I say, while attempting to hold back tears as I desperately try to avoid the fact I am having anxiety about the need to not have anxiety about a chronic health condition that disrupts my whole life.

55 notes · View notes

thedisablednaturalist · 6 months

Text

Doctor red flags:

-Mentions weight loss, exercise, nutrition, mental wellness, before any physical examination/testing

-interrupts you

-tries to rush the appointment

-laughs at you

-says you're too young

-Touches you without warning or asking for consent (common with older male doctors unfortunately, but is becoming less common)

-accuses you of self dxing/mentions dr. Google

-mentions anything about powering through the pain

Do not be afraid to drop a doctor/caregiver and see a new one. Doctor shopping is a term made by ableds who believe every doctor is perfect. Your health is precious and you should only trust those you're comfortable with to take care of it. Do not feel bad about offending the doctor. They do not care. They won't harass you or question you (if they do then that's..probably illegal). I know its hard with some insurances or lesser served areas so don't feel bad if you can't, but if you have the option to do so do not be afraid.

Extra tip: Most doctors will behave themselves if you bring an advocate. Even just having a friend sit quietly will help.

#chronic disability #chronic pain #spoonie #disability #chronic illness #wrenfea.exe #feel free to add on #edited

17K notes · View notes

rachymarie · 7 months

Text

Welp the Pacing in between rooms for no reason and extreme stimming began and I'm trying to nip it in the bud but it is hard.

Pacing around is traumatizing (iykyk)

Also the musings/shower thoughts increasing which means needing to write them down before i forget

so now no hair washing is getting done and it's a dry shampoo day and quickest shower possible

#spoonie feels

0 notes

lupusnews · 8 months

Text

#some excellent advice #spoonie feels #autoimmune #chronic inflammation #chronic pain #chronic fatigue

0 notes

hussyknee · 10 months

Text

my disabled ass, after (1)good day: "obviously I am cured. in fact it may have all been in my head. who can say? now to rejoin society!"

me, the next day: "it has come to my attention that i may be chronically ill."

#who'd have thunk #we're all shocked i know #i forced myself to go to supermarket and ended up clinging to the shopping cart to stay upright #took two hours to stop shaking from exertion #then immediately corralled the cat to tend to his rash #mfer struggles and protests until he realizes all over again that it feels quite nice actually #and then goes deadweight and purrs *while* warbling mournfully #presumably just on principle #but it's all still more spoons than I can spare #i need to take him to the vet for his follow up in a bit #so fucking drained #send thoughts and prayers #ugh #chronic illness #spoonie #disability #knee of huss

7K notes · View notes

hellyeahsickaf · 2 months

Text

When I say "I can't do that" what I'm not saying is:

I don't feel interested in doing that

I don't care enough to

I'm too good to be doing that

I don't think you deserve that of me

I'm not in the mood to do that

Not now, I'll do it later

Maybe

If that's what I meant, that's what I would say

What I am saying is:

It will negatively affect me in ways I can't afford

I simply can't physically fucking do that

I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that

And if I explain that I am unable to do that, it is not an invitation to:

Tell me how much my disability hurts your feelings

Ask if I'm sure

Interrogate me because you believe yourself to be the judge of how unwell is unwell enough

Put words in my mouth ("why don't you care?")

Tell me how easy it would be

Remind me of how many other things I've been unable to do. I keep the score more than you do

Accuse me of exaggerating or faking to avoid doing it

Ask me again shortly

Make assumptions about additional explanations. (I must be mad at you, I must not care about this)

Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")

Ask what it would take for me to suddenly be capable of doing it

Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you

Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.

Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought

Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)

But it is an invitation to:

Leave me the fuck alone about it 💕

#chronic illness #chronic pain #disability #actually disabled #chronic fаtiguе ѕуndrоmе #spoonie #cfs #fibromyalgia #cfs/me #me/cfs #cpunk #cripplepunk #pots #long covid #yes this is about something that happened lmfao #feel free to add more #bc I am sick of this!#this is about physical disability. please don't derail it

2K notes · View notes

labmousegirl · 2 years

Text

are you disabled or suffer from other chronic conditions that often leave you bed bound? do you often feel like you’re in the “damn bitch you live like this?” meme because cleaning is too exhausting?

my protip is get yourself one of THESE bad boys and hang it by your bed

it’s an over the door shoe rack and the pockets are perfect for holding a lot of household objects.

you can use the pockets to store trash, snacks, meds, and water bottles. if you worry about hygiene, you can also keep some for dry shampoo, deodorant, body wipes, clean undergarments, or toothbrush materials. on good days, you can clean it out and restock it, or have someone else help you. on bad days, you won’t have to worry about getting food and you’ll be able to feel a little better about hygiene.

it’s also really great if you want to keep your hobbies close by!! i can often only work on my bed, and then i have to worry about putting everything away if i have to lay down. if it’s a hobby that has materials that can be stored in the pockets, it can feel more accessible to jump in and out of and take less spoons to set/clean up.

#spoonie #chronic illness #chronic pain #chronic fatigue #disability #tagging for exposure bc i want this tip to get out it helped me a lot #feel like shit today might as well share this tip so i feel sort of productive #worth mentioning i suffer from chronic illness and fatigue that they’re still testing (altho medicating under the assumption of narcolepsy)#but i have trouble sitting and standing for long periods so i spend a lot of time in bed and so whenever my bed gets gross i feel gross #so this is based on chronic fatigue mostly

15K notes · View notes

chroniclesofchronicillness · 6 months

Text

I wish people would understand this

#chronic illness #chronically ill #chroniclesofchronicillness #chronic pain #invisible illness #invisible disability #spoonie #mental health #pots #svt #trigeminal neuralgia #potsandspoonies #feeling unwell

218 notes · View notes

chronic-this · 2 years

Text

Me: *sweats profusely, starts to feel chest discomfort and begins to have blurry vision at the dinner table*

Me: *has POTS and everyone at table is aware of condition*

Apple Watch: *alerts me that my heart has been above the high heart rate threshold for over ten minutes at rest*

Me: “That makes sense.”

Me: *checks watch*

Apple Watch: “163bpm”

Him: “just take off the watch and you’ll be all better.”

Me: *exhausted from having to always explain my disorder a million times over but still getting similar responses, while heading towards another loss of consciousness*

Many minutes later:

Him: “maybe you should just stop wearing the watch.”

22 notes · View notes

thedisablednaturalist · 6 months

Text

The amount of owie in my body could level a small town

#wrenfea.exe #chronic disability #chronic pain #spoonie #fibromyalgia #disability #physical disability #chronic illness #degenerative disc disease #it feels like someone filled my legs with cement

1K notes · View notes

turtwig387 · 2 months

Text

Support group for people who hate showering because it feels like a task but like being in the shower once they're there

#if you're disabled you get a free something or other of your choice as a bonus #disabled #disability #spoonie #cripple punk #I used to tag almost all my disabled posts as cripple punk in addition to the other tags but idk if that might be annoying bc it's not about #cripple punk specifically #but in a way it is bc it's for disabled people who aren't the perfect cripple #and me hating showering I feel is part of that in a way #my post #painful writer

102 notes · View notes

stars-and-branches · 6 months

Text

My joints the minute it starts raining

158 notes · View notes

spookietrex · 28 days

Text

I got new compression gloves and ankle sleeves and I actually slept through the night for the first time in months.

My mobility aids now include:

- a purple foldable cane

-a blue walker with a glow in the dark dinosaur basket I made (2 wheels in front)

- a blue rollator (4 wheels)

- a blue wheelchair

Hell yeah! I can leave my house. I got a disability lawyer. My PCP confirmed she understands I can't work and is willing to help me get disability.

80 notes · View notes

hellyeahsickaf · 3 months

Text

Me, coughing up blood and taking my last breaths: I don't need help I'm fine i got it I probably just need a nap

#i very much struggle to ask for help because I feel like a burden 🥲#disability #chronic pain #cfs #fibromyalgia #chronic illness #chronic fаtiguе ѕуndrоmе #actually disabled #me/cfs #spoonie #cfs/me #long covid

201 notes · View notes

yuribeam · 10 months

Text

my family’s disabled. EDS and tethered cord confirmed in some but everyone has roughly the same progression of symptoms. my mom and sibling have already had tethered cord release surgery and we’re in the process of looking at my spine.

im in the process of figuring out what’s normal and what’s not, how to identify sensations, how to take care of myself, how to cope with a body that works less and less. i am also autistic, so for me, that means identifying specific feelings and sensations can be difficult

so earlier today i was woken up from a nap by my mom telling me she’s leaving for dinner with my stepdad. im always down for pad thai so i get myself up, together, and out the door in about five minutes. which is not really enough time to assess how my body is feeling, which is difficult for me anyway.

before dinner im already feeling a little lightheaded and clammy and i figure i just need to eat, which i do, and it is in fact worse. i excuse myself for the restroom, thinking it’s because my stomach’s been weird, don’t feel better. silently rushing my mom to wrap up chatting with my family bc i feel like i need to be home. make it home, curl up on the recliner, feel some sharp pains along my spine, watch a little star trek, eat some leftovers, yknow

then my mom comes into my room before bed and says that she recognized how i was feeling at dinner. cold but feeling overheated, clammy, pale, almost a bit dizzy, hungry but not hungry, needing to put my head in my hands and shift around, uncomfortable but unable to pinpoint what's wrong. she says, i've felt like that a lot too, for decades, and i always think did i eat enough protein did i drink enough did i do something wrong to trigger something i can’t recognize, and actually?

i think it’s just pain.

which is currently kind of blowing my mind a bit to realize, that although i know people with chronic pain will not recognize their pain the same as able bodied people

i am more likely to feel the side effects of pain than the pain itself

put another way, i am experiencing my body reacting to pain whether or not i feel more or less than usual of what i think of as pain (sharp, shooting, twinge, spasm, pointy ache..).

I thought of general pain or the constant background pain as just a low ache that maybe comes with some stiffness and soreness, but I am feeling it through other senses and manifestations as well

so im really rethinking about how to recognize and predict and categorize and classify pain. it made me think of the emotions wheel, which you probably recognize a version of if you’ve had therapy

and i think something like this with words for physical sensations like restless, queasy, tight, collapsible, unsteady, foggy, tensed, and probably better words i’m not thinking of, would be a helpful start to identify how to communicate what is going on with my body

is this relatable to anyone? how do you recognize and communicate feelings in your body that you’ve gotten used to but are not medically “normal”? what words would you put on the sensation wheel?

212 notes · View notes