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thedisablednaturalist · 7 months

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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

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hussyknee · 11 months

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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

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hellyeahsickaf · 3 months

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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

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chroniclesofchronicillness · 7 months

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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

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turtwig387 · 3 months

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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

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stars-and-branches · 7 months

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My joints the minute it starts raining

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matchakuracat · 1 month

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when the flare up lasts so long that you start to realize that it's not a flare up anymore, this is just your new normal

#chronically ill #chronic illness #chronic pain #chronic fatigue #flare up #chronic illness flare up #spoonie #low spoons #no spoons #i feel so tired

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spookietrex · 2 months

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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.

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thedisablednaturalist · 7 months

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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

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heatherwitch · 5 days

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I’ve been in a flareup all week and mudane efforts have barely helped so spells and sigils it is.

Migraine relief

Ease my neck pain

My back is relaxed and free of pain

My headache goes away

My pain is manageable

My muscles are relaxed

#I already feel so much better #straight up forgot sigils were an option until I saw that anon about my spoonie sigils #I’ve been so caught up in trying to make it through work while feeling unwell #obv still doing mundane things like staying hydrated + well fed + taking meds + resting #but supplementing with witchcraft can make all the difference sometimes #spoonie witch

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hellyeahsickaf · 4 months

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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

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yuribeam · 11 months

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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?

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witch--tips · 4 months

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📝 WITCH TIP 📝

This is something to make when you’re bored/want to do something witchy, and also for whenever you are again in the future.

Make a list on a physical piece of paper (or print it out after). On that list—and feel free to make it LONG, and also know that you can add onto it again whenever—include everything witchy youve ever wanted to do, “chores” that are part of your craft, things you like to do that are even just vaguely related to witchcraft and your practice, types of magic youve never tried out or want to improve on, etc. Big, daunting things and small, minuscule, two-second things. Make a huge list.

Cut out every individual bullet point in that list. Fold them all up, put them in a jar (heres a good use for any of those old candle containers or spell jars), and whenever youre feeling bored or want to do something witchy, pull out one of those pieces of paper. Feel free to re-pull if you don’t like the one you got. Then, do it. You can throw the paper out when you’re done or put it back in the jar whenever you want.

You could also do the same thing online using one of those spin the wheel websites too. Since this is all left up to chance, you may also ask a deity or spirit or the universe or whatever beforehand to make sure you get the most relevant/helpful task.

Under the cut I’ll put some examples of things to put on your list, in case you want help!

Try bibliomancy

Find some nice rocks outside

Do a big cleansing

Make a return-to-sender ward

Water all your plants and have a conversation with them

Enchant your coat for extra warmth, comfort and protection

Paint your nails using color magic

Do a spell and somehow include your ceiling fan

Come up with an emoji spell

Ground yourself

Do a spell on your dishwasher so that everything that is cleaned in it is enchanted to make all the food it touches delicious

Jinx that pen Ronald is always annoyingly clicking

Enchant your pillows for good sleep and pleasant dreams

Leave an offering out for all nearby spirits. Just to be nice

Open a window

Close/ward your mirror

Clean your altar/room/sacred space

Do a giant ritual for someone. A deity, spirit, ancestors, Earth, or even yourself. A ritual about being grateful and happy, not even necessarily to accomplish anything aside from feeling good and/or saying “thanks”

Enchant your phone case for protection, both from breaking your phone and from thieves

Enchant your hairbrush for healthy and good looking hair

Enchant your glasses for clarity

Enchant your debit card for attracting money

Spin around, look up, and the first thing you see? Enchant it

Try cloud divination

Look up different types of knots and practice doing them for future knot magic

Make a decoy poppet for yourself (so unwanted/negative energies attack it instead of you) (remember to do wards so those energies can get in but can’t get out)

Shuffle your playlist and interpret the first song that comes up as a form of divination

Redo one of your wards more powerful than before

Clean out that old spell jar

Set out some water for SUN water

Watch a movie with a witch

Listen to the wind

Haphazardly fold a piece of paper many times, make random cuts into it, unfold it, and interpret the resulting form as a method of divination

Pet your pet

Do a self-confidence spell

Plan an outfit using color magic

Sew a sigil into a blanket

Get out a pendulum and talk to it

#i just did this and its kinda fun just coming up with stuff #makes me feel inspired #witch tips #spoonie witch #this isnt a groundbreaking idea or anything but ive been enjoying doing it now that i have TIME again! so thought id share :)

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geometric-bs · 2 days

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The most interesting things happen when people who aren't chronically ill get... idk, a lil taste of it?

My classmate who had to sit out one gym class because of an injury turned to me and the other kids who basically always had to sit at the sidelines and went "this really sucks, I don't know how you do this every week"

A family member who had hurt their back complaining about the constant pain and not being able to sleep... and the realisation on their face when I go "yeah, I get it, that really sucks"

I have a different family member who struggled with long covid for a good while, and still they're easier to talk to because they get it

I don't have a proper conclusion here but find it so interesting when these worlds collide. I'd rather not that other people suffer but I do appreciate it when people take these experiences and use it to foster understanding (as opposed to the well-meant but ill-delivered "I don't know how you do this every week!") Idk, add your thoughts if you have em

#chronic illness #chronic pain #chronic fatigue #fibromyalgia #spoonie #disabled #disability #I am always unsure what tags to use #theres probably some internalised ableism / “not being ill/disabled enough” going on there #I've added disabled for now but might yeet it if I keep feeling uncomfortable using it or am !politely told by people to remove it #that topic probably deserves its own post but again: unsure and uncomfortable

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pots-plus-pans · 1 year

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sometimes i want to draw

but i am not the one who controls my hands anymore

sometimes i want to run and dance and play

but my body creaks and my head spins with every movement i force

sometimes i want to sing

but my throat croaks and the tune is lost

sometimes i want to write poetry

but my brain refuses to come up with the words

sometimes i want to tell stories

but my memory fails me and the children laugh

i want to create art

this makes me human

i want to be human

let me be human

#poetry #i guess?#i’m not a writer #but i want to express my feelings #i hope this resonates with someone #i hope i am heard #actually disabled #disability #chronic illness #disabled #chronically ill #cripple punk #spoonie #cripplepunk #physically disabled #cpunk

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thedisablednaturalist · 10 months

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Do people not remember that period on Tumblr where neurodivergent people completely threw physically disabled people under the bus to further their movement? And then they wonder why we want our own space.

Things used in arguments I heard about 10 yrs ago:

- "you wouldn't say/do that to someone in a wheelchair"

- "we are literally physically disabled too bc our brain is an organ!!!"

- "physically disabled people get everything look they have special parking spaces and ramps!"

- "when you go to the doctor for physical illness they immediately give you all the medicine and work hard to find a cure like Dr. House, but when I go to the doctor they throw me out the window" (stuff along those lines at least)

Y'all kicked us out, ignored us, made your own lil club with its own terms, turned us into jokes and strawmen, and abandoned people who are both physically and mentally disabled.

We wanted solidarity and you all didn't.

But how dare we make our own community so our voices can be heard, god forbid we discuss issues important to physically disabled people in this community without mentioning neurodivergents. And when we get even a little pissed off? How dare we.

And it's happening again. I've seen the same rhetoric repeated. No one is saying that mentally disabled people have no issues or don't face ableism at all. Stop bringing up your issues on our posts, it derails it and clogs up the notes.

We had to separate ourselves because you all kicked us out first so that neurotypical people would accept you. You didn't want to be associated with the gross ugly cripples.

Cripplepunk community is not the same as disabled community. It's under the same umbrella, not a replacement. Stop taking over our spaces and stop posting shit in our tags.

#cripplepunk #cripple #cripple punk #chronic disability #chronic pain #physical disability #spoonie #disability #ive seen a ton of young people posting that stuff and then everyone else rbs it without a second thought #and young people in my notes who dont know the history #pd people feel free to add your own examples

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