#i hate being a spoonie | Explore Tumblr Posts and Blogs

aurora1040 · 2 years

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Normally I am very positive about being disabled. Im always looking at the positive while acknowledging the struggles. I reblog jokes and memes to make light of my life while spreading awareness to my followers.

....but not today.

Today is a bad day for me. Today I hate how disabled I am. Today I hate how broken and dysfunctional I am. Today I found out thay I cant even PRETEND to have anything at all together with my parents who live an entire state away. Im so broken that I cant even FAKE it. And today, its hitting me really, really hard.

Ive been crying for almost a half hour straight. Today, life SUCKS and I feel AWFUL and BROKEN and like a complete FAILURE. I lost at the game of life. The friend who came to unlock my door yesterday while I was face down got some of our friends to come clean my apartment while I was gone and dont get me wrong, I am incrediblu greatful and indebted to them for their act of kindness. I didnt like that they saw my apartment in such a terrible state, but I could handle that. One of them called to let my mom know how bad it was and honestly, while Mom was the last person on earth I wanted to know, I could handle that, too.

No, what got me was after i got back home from the hospital, mom sent me a text that she and dad *already had plans to come around the end of september because they already knew how badly i was struggling.* Thats a whole 8 hour drive.

That. Is what got me in tears. That. is why today is awful. Why today i hate being disabled. I hate having exective dysfunction and adhd. I hate having unexplained fatigue. I hate that there appears to be absolutely no evidence whatsoever in my blood work or heart monitor at the hospital to explain why me going off of salt made my legs give out from underneath me. I hate that i dont know how to properly advocate for myself. I hate it i hate it HATE IT

For the first time in a long time, i habe actually, consciously feel and think that I am a failure. DONT COME AT ME SAYING IM NOT. I am ALLOWED to have days where I just feel too much and hate it all. regardless of if its true or not, *that is how i feel. That is what im thinking.* This is not my default state of mind. Tomorrow I will be back to my self, the negative thoughts processed and filed away for when i finally see the therapist again. My coping mechanisms will be functioning properly again.

Just let me have one day. just ONE DAY to hate my lot in life. Just ONE DAY to hate myself. you can come at me tomorrow to check in on me if you want. I am safe, i am fine, i am not going to hurt myself or anyone else.

I just.... needed to let my feelings exist. be typed out so it can be tangible. And now that it is, i can process and move on after i get some rest and more water.

If youve read this far, comment with just a ♡ or a ☆. Either one is fine. no words. no tagging. just a heart or a star.

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portraitofpluto · 8 months

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everyday when i'm home i'm like "disabled liberation!!! i can use my mobility aids in public and don't owe anyone an explanation!!!" and then i get to the public in question and i'm going over my lines when someone asks What's wrong with you What happened and then i just suffer

#i hate it here #this is a hell scape i cannot escape please god help me #this is gods punishment for me being a queer #disability #chronic pain #myalgic encephalomyelitis #chronically fatigued #chronically ill #pots syndrome #spoonie #chronic illness #dynamically disabled

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chronicallyuniconic · 11 months

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Did a thing yesterday, today I'm suffering.

Noone wants this. Absolutely nobody.

I feel alone in my body, only other chronic pain people know what it's like (ime)

Nobody can do anything to help it. I just have to sit with it, somehow.

These pains are eating me away. Joint pain, muscle pain, skin pain, just existing pain.

I can't speak today, only lay down & breathe slowly. I don't have the energy to push the words out, they come out in whispers.

The fatigue just takes me, I'm falling asleep allover the place. I cannot control it.

Nobody fucking wants this.

Why does this always happen when I'm just trying to live my life?????

Will I ever be unchained from my bed?

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chronicpain-itsastruggle · 20 days

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love sitting in front of Costco for 30 minutes waiting for a motor cart bc im disabled and cant shop at all without one. Love how much they care abt their disabled customers with their SIX CARTS FOR THE ENTIRE WAREHOUSE /negative

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headpainmigraine · 2 months

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I've seen too many posts from disabled people feeling shame for being angry now, and I've had enough of it.

I see too many posts from physically abled people disregarding the lived experiences of physically disabled people because we're angry.

Part of cripplepunk is that we don't shrink ourselves into the timid, sweet, smiling good little cripple that the ableds want to see, like it's a mystery to them.

Part of cripplepunk is letting yourself be angry.

Chronic pain causes structural and functional changes in our brains.

Induced migraine onset caused immediate personality changes in patients who entered the study clinic polite and chatty only to become surly, aggressive and withdrawn.

And even if you think all of that is bull, look at the world we live in.

Look at the things able-bodied people say in the comments of any physically disabled person's vent blogs.

Look at the world that isn't made for us.

how we can't get wheelchairs into shops,

how we're put in real danger by people parking like twats,

fighting sloped pavements,

fighting lack of public seating,

no hearing loops

no Braille

having to rely on underpaid undertrained part time staff to use the lift or get to the second floor or get through the back door because the front one has a single step

fighting dirty looks and abuse when we use the disabled seating on the bus or the train,

and people who still don't understand why we "have to be so mean."

Infantalised, dehumanised, objectified, forgotten, forgotten and again forgotten, and able-bodied people have the gall to tell us "you don't have to be so rude."

Dismissing our point of view because we didn't present it politely enough for them.

These people who don't think twice about making last minute plans, booking holidays, taking public transport, just popping to the shops, fucking hydrating, but still think we're being unreasonable when we tell them that medical supplies aren't toys and shouldn't be treated or used as such, yeah, regardless of supply.

We're forced to work twice as hard to be just as productive as coworkers with half the good will from management breathing down your neck about your sick days.

Trying to find employment with no luck, finding employment and not being unaccommodated in the workplace, being fired, trying to claim benefits via a long humiliating process, being denied, and appealing, and being denied, and going to tribunal to have a crappy decision overturned, only you've had no money for half a year and then some.

And even seeing other physically disabled people with the "luxury" of mobility aids fitted for them, and high quality care, and support, and being seethingly angry, not because they have something you don't, but because those things are seen as luxuries.

Because our basic standard of living as defined by the government (any government) is "struggle and die"

I'm not saying lashing out at others is fair, or that being angry all the time is healthy - there are therapists out there who deal with people in intractable chronic pain who can help with that kind of thing

But I AM saying, don't be ashamed of being furious. Don't be embarrassed to be angry.

Because do you think those motherfuckers could live our lives with the serenity and sweetness and politeness that they demand from us?

#cripplepunk #cripple punk #crippunk #i hate seeing you post about how bad you feel for being human #don't feel bad about being angry #don't feel bad about being jealous #you are carrying a mountain and everyone else is berating you for not smiling while you do it #fuck that #don't make yourself small for these people #it just makes them easier to squash you #chronic pain #disability #spoonies #i love you

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s0fter-sin · 5 months

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i’m so sick of fucking rashes, what the hell kind of symptom even is this just, “hey, we’re going to make you itchy fucking everywhere for no reason and you can throw as many creams as you like at them but they’re not going to do shit 😜”

#i know skin issues is a pots thing but fucking hell im over it #im sick of being fucking itchy i hate it #last time i had a major flare like this i ended up using scissors and ended up accidentally cutting the shit out of my stomach #ive tried vitamin e cream eczema cream fungal cream lanolin and just a general moisturiser and they help for the very first application #but then after that does shit #its like the rash goes ‘ha! im gonna lull you into a false sense of relief just to fuck with ya!’#every time ive had a skin flare nothing i put on it does shit and after months it goes away on its own #but fuck if it isnt itchy and painful as shit in the meantime #ive moisturised more in the last three weeks than the entire year #coming out of my cage and ive been doing just fine.txt #spoonie #pots #postural orthostatic tachycardia syndrome #eds #ehlers danlos syndrome

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dirtytransmasc · 6 months

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I have a question for other fibro, chronic pain/fatigue, disabled people, cause I need some help.

I have issues showering, like most of us do, due to pain and fatigue and weakness etc. that makes standing up for long periods and the physical labor of washing myself difficult, and have spent quite a while just making it work.

I tend to just sit on the floor, but because of the tightness in my legs that makes it so I have to kneel or hunch over to avoid pain/stress on my joints (which causes circulation issues in my legs if I kneel or back pain if I hunch), the difficulty I have getting up and down, and the amount of times I've almost passed out from the effort, sitting on the floor is becoming less of a solution and more of a hindrance.

my real problem is that I can't stand shower stools. I have never found one that lets me feel mobile in the shower, I always feel stuck and boxed in because they limit the range of motion I still have.

I have issues turning around to wash my hair out. I have to pick between being in the water or being just out of it which makes washing my hair and body difficult. I can't easily make any major position changes without more effort than I would need by just sitting on the floor. I have a very hard time holding the shower head so I have to leave it up in the holder which leaves the water and me in very fixed positions.

overall, shower stools do not work for me, and I was wondering if anyone had found other solutions to the showering issue, cause I want to rip my hair out.

#the slickness of the bathtub floor has always been my bestie (when I'm sitting down of course)#it made switching from wetting my body and keeping my hair dry to wetting my hair and keeping my body dry so easy cause all I had to do was #spin a bit and all would be well.#the stool doesn't let me do that which means I have to twist my back (which hurts) or stand up. step over the stool. and sit back down-#(fainting/slip risk) back and forth till I'm done washing which is exhausting as all hell #I hate being planted in one place. it drives me nuts #and most stools have a lot of traction so the stool doesn't slip. which in most situations is nice. but then I can't even slide back and-#forth to avoid turning around.#some stools I've tried that on have landed me flat on my ass cause I just tipped it or fell off of #at the end of the day I end up ditching it to either stand (torture myself) or sit on the floor (torture myself in a slightly different way #someone help before I accidentally find a way to die in my own bath tub #fibromyalgia #fibro problems #chronic pain #chronic fatigue #chronic illness #disability #spoonie

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opalsiren · 10 months

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this might be an unpopular disabled/chronically ill opinion but i love it when the ppl around me make a big fuss when i'm in a flare up. most ppl see that you're in pain for the 29374747th time and even if they don't say it outright you can tell their response is something along the lines of 'oh not this again 🙄' but for me even if it is my thousandth flare up it doesn't get any easier. so when ppl are like 'oh no you poor thing!! can i do anything to help 🥺' it means soooo much 2 me

#the flipside of this of course is strangers taking pity on you for being disabled and putting you in a position where you have to #reassure them?? which i hate #.txt #chronic illness #chronic pain #spoonie #disability

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panicismydefaultstate · 1 year

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Being chronically ill and developing new symptoms and illnesses can be terribly and unendingly frustrating. Particularly when you go to Drs and they refuse to do anything about it or even consider that something else or new is wrong. The fear and overwhelming feeling that something is so terribly wrong in your body, only to have no one care or think it’s important enough to investigate.

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justanillvampire · 2 months

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I’m so fucking mad at myself. (And I’m up, so todays update)

Today has been shit from the moment I was cracking my tired ass eyes open at the ungodly hour before 400.

I was immediately sickened by turning the lights on. I’m photosensitive, I was nauseous and dizzy and bloating and my head was starting to hurt. Not to mention the god awful tiredness that seem to have every cell screaming in protest if I moved. It’s like when you write too long with your hand and you get that burn but in this case that burn is in every movement.

Don’t forget the impending DOOM knowing how sick I felt, knowing that working was most definitely going to cause further damage since I dont know your not supposed to talk when you have acid reflux (Gastroesophageal reflux disease). Queue anxiety. Queue 🌈 Panic!

Then the orchestra of symptoms really began to crescendo to form the perfect symphony of pain.

At work my anxiety was further triggered, followed by just constant stomach issues. I was so uncomfortable and there was so much pressure in my stomach and ofc I couldn’t get any air out.

I frequently have to gargled salt water to try and help my throat and talking ability but fuck did that make me feel sicker. I dont know why I thought perfect time to try and force up some air. It ended up still somehow to my surprise that I threw up, just once. As I finished a second but unproductive gag I got a phone call (the phone just answers it’s not a choice on my part) and I was mortified but after struggling to regain an acceptable composure I went on feeling like shit.

I ended up laying in my recliner after work for hours and that’s what I’m so pissed about. I didn’t eat anything but one maybe two bits of oatmeal this morning before 600.

That’s why I feel extra terrible right now because I didn’t eat. How stupid do you have to be to fucking forget?! (Not talking about anyone but myself) to eat!! This is why i have so much air in my stomach and I can’t get any air out and it’s making my acid reflux so much worst and I can’t fucking sleep when it’s like this. And! if I eat now I’m still just as fucked because it will cause the same reaction since it’s too late I missed the window where it’s okay to consume food.

I don’t ever feel valid calling myself disabled(i feel guilty even having the thoughts), but days like this I feel like maybe I might be. I still fucking can’t even believe it’s been almost a year since I got sick and just never returned to the normal I was used too. This is my bad normal, it’s less like this on less bad days/days I don’t work.

My body hates me. I hate myself (not like that I have some self love but in the sense of I cause myself more pain and suffering by being stupid) and we work together to create a miserable existence.

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aurora1040 · 2 years

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When youre such a spoonie that you just quit making any promises at all

#my mom just invited me to a zoom thing 'if you want'#i dont want to say no #but i cant say yes either #i hate saying 'it depends on how im doing'#it feels insincere #like some excuse to push them off #but how do i tell them that ive been in bed since noon #and that i perpetually keep forgetting to take my morning meds today #let alone joining a zoom whete im required to actively paryicipate #i hate being a spoonie #its so exhausting #spoonie #spoonie life #spoonies

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spoonsforminutes · 1 year

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Um, I don’t know how to even feel about this post, but I’m on medical leave from my job. An investigation has been opened by my state’s Board of Behavioral Health Examiners to investigate the therapist who abused me. I had my first full-blown panic attack yesterday that lasted two hours. I was panicked and shaking and sweating, and my body went all numb. It was really fucking awful.

I’m having a weird balance between being online and being not right now, so if anyone is feeling lonely or wants to talk about things, my ask box is open. Anything sent today I’ll try to answer or address tomorrow.

We have to build communities and bring them out into the real world. everything is moving online again, and there is way too much terrifying news that’s been thrown in my face. I know i don’t have much of a voice on this blog, but im really thankful for this community. i honestly don’t know how i would’ve survived my childhood without this space. i want to especially shout out @heyatleastitsnotcancer for being a role model to me. i never would’ve realized the ableism i was facing or how ableism affects literally every aspect of a disabled person’s life. thank you so much for everything you do and continue to do.

if today is hard, take a breath, hold it, and exhale. Take care of yourself because your life is incredibly valuable. Be kind to your mind and you body, and we’ve got this.

#disabled #disability #spoonie #chronic illness #chronic pain #mental health #mental illness #positivity #self care #tw trans genocide #tw current events #tw us politics #tw panic attack #im an empath and god i hate being online sometimes #i just like my happy little corner #that’s why i like tumblr the most

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sunnycowleaf · 6 months

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I'm in an immeasurable amount of pain and standard pain meds don't do much to help with the pain so am just suffering in bed knowing it'll continue for another 4 or so days

#i hate being chronically ill #spoonie #chronic pain #chronic illness #i cant even go to the doctors about it because they dont give a shit and im not gonna put myself through that level of pain #cause theyll just send me home after making me wait 9 hours

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an-undercover-bi · 1 year

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Being disabled in academia is awful.

#do not recommend :(#I hate it here #I just want to learn why are there so many barriers in place #and when you try to fix them they just. deny everything while being investigated and go back to doing exactly what they were already doing #nothing matters and everything is pointless wahoo!#delete later #vent post #spoonie #chronically ill #not feeling optimistic rn fellas #the wrath will pass and I’ll be more pragmatic then #but! until then I’m gonna quietly have my temper tantrum #disabled #students with disabilities #disabled academia #I’m fine btw I just took a survey for the honors program I’m in and it reminded me of my rage

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chronicpain-itsastruggle · 2 months

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You know what’s humiliating? Waiting for 20 minutes in the freezing cold in front of Costco on a monday night at 7pm because there are no motor carts

I quite literally cannot walk and shop in this giant store. WHY ARE THERE ABT 4 MOTOR CARTS FOR THE BIGGEST STORE IN MILES

#I HATE BEING DISABLED #chronic pain #chronic illness #chronically ill #wheelchair #disabled #chronic fatigue #spoonie #actually disabled #cripple punk #invisible illness #costco

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cherry-blossomtea · 2 years

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IM ALLERGIC TO CARROTS TOO?

HELL. MY LIFE IS HELL. BODY PLEASE I NEED TO EAT FOOD

#spoonie blues #for those who aren’t aware #my immune response hates basically everything #I’m allergic to almost every fruit #and apparently carrots and celery and similar.#not to mention every animal #I can’t go outside because it makes my body think I’m being attacked #my allergies are out of control Lmfao

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