where did my spoons go

jess || design student || 21 || cfs, cps, fibromyalgia, tmj, ibs, tendonitis, migraines, allergies, lactose/fructose intolerant and gluten sensitive. this blog is mainly a place for me to vent and find a community of other people like me this is a side blog, so I follow & like from @totally-creative

[captvreme]

[liberaljane]

Being disabled shouldn't equal being poor.

Abolish the sub-minimum wage, increase income caps for disability assistance, and establish universal basic income.

digital illustration of a disabled nonbinary person with leg braces. They have a green mullet and are wearing a black t-shirt, purple cargo pants, green chunky heels and a green belt. There's text that reads, 'being disabled shouldn't equal being poor.'

[geekwithsandwich]

seriously though it would be an enormous help if more people understood that autistic brains/bodies (and some other conditions too) very VERY frequently don’t process sensations and emotions in normal ways and INSTEAD replace them with bodily and emotional responses that are total nonsense in an NT context

like i have chronic pain, i have an always-on headache that used to be around a 2-3 on the pain scale and is now a 6-7 most days.  but periodically i find that instead of actually feeling a level of pain i can rate, i have a series of puzzling physical sensations like nausea that miraculously get better when i take painkillers and go lie down in the dark.  because they were actually pain signals.  pain signals that got turned into something else at some point in my body.  so i have days where i feel GREAT and pumped to do stuff and then i’m like WHY AM I NOT FUNCTIONING WELL and i go lie down in the dark for a while and it gets better??  because i was actually at an 8 which is Can’t Function levels for me, but 90% of that pain was invisible to me, turned into nausea and manic energy and weird sudden mood shifts instead of “pain”.

I don’t experience normal thirst signals most of the time, either.  I get cravings for ice cream and lime popsicles and watermelon instead of being thirsty.  I had to learn that “i suddenly desperately want ice cream” is my body’s way of saying “put some water in this bitch”.

I also get nausea instead of hunger signals a lot of the time.  nausea is one of my body’s favorite go-to signals to send, in general, so it can mean almost anything.  when my stomach turns i have to go through a checklist of possibilities to figure out what i’m actually feeling.  this is a big reason i eat a lot of snacks.  it’s step number 3 or 4 on my “why do i feel sick” list and happens at least once a day.

and anyway this shit is important for non autistic people to know because we can’t always tell you what we’re experiencing, but also sometimes we can get really upset and overwhelmed with trying to even understand what we’re feeling.  doctors especially need to know this.  how can i tell you what’s wrong with my body when my body doesn’t know how to use its own language for communicating what’s wrong?  when it routinely sends me a mishmash of signals that are totally useless for figuring out the problem?  it’s not impossible but it requires an understanding of just how different the place i’m coming from really is.  you can’t get anywhere by treating me just like an NT patient.

but most people aren’t even aware that “body signals” are a real tangible thing that can be effected and “go wrong” when your brain and body are built weirdly.  literally any process in your body can be broken, that should be obvious, but people are so oblivious to the things their body does automatically that they aren’t aware they exist, and therefore don’t know they can break.  it’s really important to make people aware of these functions.  there are so many disabilities that happen when a hidden function breaks and it’s impossible for abled people to grasp those disabilities without comprehending that that’s an actual thing their body does for them.

[spoonie-living]

Autistic and ND folks, this might make sense of a lot of experiences you’ve had, and can help put it into words in a way that can be shared with doctors, friends, and caregivers alike.

[al-ways-ti-red]

also, i’m scared for next week because I start work which means 8hrs a day working with kids both inside and outdoors and i’m worried i’m going to overexert myself and end back up in my braces :(

[al-ways-ti-red]

advice from my fellow spoonies pls!

hi friends,

if any of my spoonie friendos have advice/tips on how to motivate/remind yourself to actually take your meds on time, PLEASE help a homie out

i’ve used countless apps to remind me but I really struggle with finding motivation to take my vitamins throughout the day

[al-ways-ti-red]

my stupid dum fibromyalgia hands decided they weren’t up to holding a singular bag at the mall yesterday, and now the bases of my thumbs are hella bruised feeling and rlly angry 

like it got to the point where i couldnt even peel off the lid of a cream cheese container this morning??? stupid hands >:( 

[somethingelse317]

Has anyone ever been diagnosed with a condition they learned about from Tumblr posts and thought “heh that sounds just like me”?

[al-ways-ti-red]

i suspected that I had fibromyalgia because of places like tumblr,  found a rheumatologist in my area that specialized in fibro, who finally helped me get my diagnosis of fibro 

[didiondunne-deactivated20200309]

My sleepy bitch disease is flaring up today.

[lisophisen]

The worst part of chronic fatigue is probably having so much will, and so much want, to do things, but having no means in the form of energy.

[al-ways-ti-red]

ugh

just got a call from my school’s wellness center to check up on me to see if I had found a therapist at home to help with my anxiety i was having at school and my chronic pain....

not like I went to them two months ago to do EXACTLY that and instead of letting me talk to someone they just sat with me for 30 minutes literally googling therapists closer to home because the semester was almost over and there “wasn’t enough time to make appointments.”

[s0ftfuzzyman]

me, forgetting that fatigue is a symptom of all my illnesses: why do i never do anything im so lazy :^/

[skindyedblue]

That spoonie feeling where you’re not in enough pain to merit taking prescription pain meds, but hurting too much for the otc meds to make a discernable difference.

[al-ways-ti-red]

hello yes so everything hurts and I feel like

d e a t h ™️

[al-ways-ti-red]

ok wow this blew up way more than I expected -i’ve only had like a maximum of like 12 notes on any post i’ve ever made and I find it hilarious that my meme post about my fibro flare is the one that blew up lmaoo

[whitepeopletwitter]

[so-over-ableism]

me, going up stairs: oh this is worse than going down stairs

me, going down stairs: oh this is worse than going up stairs

[al-ways-ti-red]

hello yes so everything hurts and I feel like

d e a t h ™️

[al-ways-ti-red]

i love doing mundane actions like, oh y’know, existing, and my joints just decide to ALL SNAP AND CRACK AT ONCE

like gee, thank u for the SNAP, body. this is definitely what i needed rn :)