#spoonie thoughts

[thesecretlifeofmecfs]

From Misa on Wheels 💖

#disability tag #disabled life #spoonie #spoonie life #spoonie thoughts #mecfs #cfsme #myalgic encephalomyelitis #chronic fatigue syndrome #dysautonomia #chronic pain

[chronic-this]

Chronic illness is simultaneously being the burden, while carrying the burden.

(Or at least that’s what it feels like)

#spoonie #chronic illness #chronic illness things #chronic fatigue #chronic fatigue syndrome #myalgicencephalomyelitis #mecfs #postural orthostatic tachycardia syndrome #pots #dysautomnia #endometriosis #cancer #feeling like a burden #spoonie things #spoonie thoughts #spoonie life #spoonie problems #spoonie friends

[inpainbutvibing]

hey does anyone know of any discord server/online community space for chronically ill/disabled people? i just want to talk to someone who understands

#chronic illness #disability #dysautonomia #spoonie thoughts #spoonie

[drakkensystem]

I think one of the things about Tumblr is that it not only doesn't try to bridge the gap between virtual and irl, it explicitly works to keep that gap there and celebrates it's existince.

Like Facebook tries to make you think you're actually socializing irl with your FB friends and seems to be actively working to blur the lines between online and offline, socializing and networking, work-stuff and fun-stuff.

And Twitter is trying to be in the middle of everyone's everything all the time, so you can go to Twitter for blow by blow updates on anyone or anything anywhere in the world.

But Tumblr, by contrast, said, "When you come here, you are who you say you are. This place is inherently artificial and only has what you bring to it", thus making it (for good or ill) a communal creation. The artificiality provides anonymity, obviously. But recently I've come to appreciate its escapism as well.

When I got on Facebook recently (look, I've got family I stay in touch with that way), I saw pictures and stories of people camping at Yellowstone or visiting historic locations- all the sorts things I haven't even allowed myself to think of dreaming of while my migraines have been so bad that literally just going to the local pizza joint for lunch (with a blind fold on to protect myself from the sunlight) knocks me out for a week. And seeing people not just leaving their house on a regular basis but doing shit like taking vacation or even just actually enjoying the sunshine? It fucking hurt

But Tumblr allows me to forget, at least for a little bit, that I haven't left my house in days because I literally can't. I can escape from the yawning pit of darkness and boredom that my physical world has become. I can go on Tumblr and not have to be in my house even when I am. Because Tumblr said, "Fuck your irl identity. When you're here, you are who you say you are, and this place has only what you bring to it"

#tumblr #ramblings #spoonie #spoonie thoughts #facebook #migraine #twitter #social media #my thoughts #disability #long post

[hussyknee]

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

[thedisablednaturalist]

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

[youngchronicpain]

PSA to abled people

don't ask how a disabled person became disabled

because chances are, the answer is just "I was born"

which is awkward to say

or worse, the answer is something traumatic that is difficult to talk about

either way, don't

#just wait until I tell y'all about the lady who was sitting in front of me on the plane #she thought it was an appropriate thing to ask 2 hours into being stuck on the tarmac #disability #chronic pain #chronic illness #spoonie #ableism

[delirium-mind]

For most people, getting medical tests results that say

"No abnormalities, everything is normal" is great

But when you constantly are in pain, can't eat can't lay down can't sleep or hardly do anything..its such a fuck you slap in the face. It's hard enough to get doctors to believe you in the first place to get any testing going on...then to get this result? It just feels like it ruins any and all chances you might have had and flushes them down the fucking drain.

Having a (invisible) chronic illness sucks but it's mostly because doctors don't seem to want to listen or believe you.

#spilled ink #writing #spilled thoughts #late night thoughts #journal entry #chronic illness #out of spoons #spoonie #chronically ill #invisible illness #disability #invisible disability #hyper IgE #jobs syndrome #pots syndrome #ehlers danlos syndrome

[hellyeahsickaf]

This is not a joke but men, if you need to see a doctor see a fucking doctor. There is nothing emasculating or shameful about it and you are never less of a man for doing it. Your pride is not worth your health or life. You aren't weak because you didn't tough something out you're strong for tending to the needs of your body. The mindset that it's weak to seek medical care can have deadly consequences

Yes this includes "embarrassing" issues. An object stuck in your ass because you girlbossed too close to the sun trying to have a good time, not only will any person in the ER tell you they've seen it (and probably worse) but people have died from sepsis because they didn't want a doctor to examine them that way or to have to explain their predicament. Not worth dying over

Another person touching you in a medical setting is not sexual in any way shape or form. It implies nothing about your sexuality. Even if your body reacts in a way you don't want it to (it happens, likely won't but if so they don't think you're a perv or some shit). Malpractice of course exists and often a witness will accompany the doctor for such examinations to keep you safe and ensure you are treated professionally.

Strict laws exist to protect your right to privacy. Anything you say to your doctor stays confidential.

If you are trans your doctor should know this as it can be vital to you receiving proper care. And you are again, no less of a man. Dysphoria can be unbearable and acknowledging your anatomy can be awful for some but sometimes it's just something you need to get through for the sake of your physical health. Also trans or cis or in between there's no such thing as a "girl illness/disability". Get checked for whatever's going on

STIs and UTIs and the likes are not shameful. If Planned Parenthood is an available resource in your area you'll probably find that more comfortable and safe than you expected. And if you're a minor they will allow anyone confidential and typically free care (tell them you have no insurance). It's not just a lady clinic that only does abortions, they do everything from trans care to routine exams and birth control (many also provide free condoms). However many doctors specialize in/treat this shit, see it every day, and sometimes the treatment is so simple and can prevent something so much worse.

#moral of the story don't be my goofy ass with a kidney infection #bc i thought i could “power through” a UTI you can't bro #chronic pain #chronic illness #disability #fibromyalgia #cfs #actually disabled #spoonie #me/cfs #cfs/me #toxic masculinity #trans rights #misandry #chronic fаtiguе ѕуndrоmе #healthcare

[audhd-space]

I read a thread on twitter that said that capitalism made the neurotypical gaps to be so narrowed that often capitalism relies on pushing you beyond your capabilities as humans, and that means capitalism punishes you for being human, and punishes you more if you have disability because it’s not profitable

#shower thoughts #neurodivergent #chronic illness #chronic pain #disability #autistic #audhd #adhd #ableism #spoonie #disabled #chronically ill #invisible illness

[thesecretlifeofmecfs]

Mindfulness & Health

"Losing everything teaches you to appreciate everything."

If there's any lesson I have learned from this illness, it's how to appreciate what I do have. I've lost my health and much of my autonomy, two things most people take very for granted.

But the days I was able to get out of my room- the sun never shone so bright, the leaves were never so colorful, and the world had never been so beautiful.

And I came to realize how much I had taken for granted the little things, and I started to take notice of these happy moments in my life, even still being very sick. The soothing water against my skin in the shower, the comforting aroma of a candle next to my bedside, the softness of my cat's fur and the calming rumble of his purr.

When you take notice of all these small moments, they add up. And they make life a little more bearable. A little brighter, a little more beautiful.

#mindfulness #severe disability #severe mecfs #mecfs #cfsme #mindful living #meditation #myalgic encephalomyelitis #spoonie life #spoonie thoughts #chronic illness

[chronicsymptomsyndrome]

How do I recover from severe burnout with an overwhelmingly messy recovery space

How do I clean my overwhelmingly messy recovery space properly if I am severely burnt out

How do I recover from severe burnout if I’m constantly using all of my energy doing the bare minimum

How do I recover from severe burnout

How do I recover

#audhd problems #autistic burnout #adhd burnout #burnout recovery #burnout #mental health vent #autistic thoughts #audhd things #messy room #messy house #executive dysfunction #spoonie #chronic illness #neurodiversity #neurological disability #physical disability #autistic rant #adhd rant #autistic things #adhd problems #living with adhd #adhd life #untreated adhd #unmedicated #late diagnosed autistic #audhd creature #audhd struggles #adhd autistic #adhd adult #autistic trauma

[inpainbutvibing]

i don’t know how many “just breathe through it”s i got left in me man

#spoonie thoughts #dysautonomia

[witch--tips]

📝 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 :)

[cutepastelstarsalior]

Gee doc, I don’t think me getting physically tired and being in physical pain after doing small things or heaven forbid big events, multiple times a month is because I’m fat! But oh well!!!! Wow you’re soooo smart~ /sarcasm

#vent #kind of? #actually adhd #meme #my thoughts #chronic fatigue #spoonie #actually autistic #tw implied fatphobia #yall I’ve literally spent the whole day either using my phone or sleeping only getting up 1 time for food….i don’t think that’s normal #fatphobia

[chronicallyuniconic]

People who are not *yet* disabled seem to be 100% convinced that there is this complex-parallel-reality-of-support-system, in place for disabled people, which they have somehow never seen, but are absolutely convinced they exist

#chronic life #chronic pain #chronic illness #chronically ill #chronic fatigue #spoonie problems #i'm in pain all of the time #just a thought