#negative spoonie

[mikelogan]

i just got my long-term disability backpay for the last 14 months anyone else want to cry literal tears of joy with me

#ramblings #im still in shock that they overturned the denial tbh #i have to set a bunch aside for taxes but i might be able to find a car now 😭 #went from negative in my account to this im just!!! #its been so fucking long #spoonie life

[howtobeapersonwithfibro]

I fucking hate insurance companies I wish they were a physical entity so I could do horrible horrible things to them

#still battling insurance for a procedure they approved 2 years ago after a year of fighting for it #this is actively ruining my life #occipital neuralgia #spoonie #chronic illness #disability #my post #negative

[dissociativedoe]

do nondisabled people realize how petrifying it is to know that you will walk into an event and most likely be the only visibly disabled person there?

the only one with a mobility aid, communication device, service/guide dog, physical deformity/difference, etc.... you dont even step foot in the door and you already stick out. EVERYBODY stares at you, even the nice, accepting people. are you an attention seeker or someone they should pity? you dont get to make that decision; they already decided the moment they saw you. are you going to be respected, babied, or insulted? or will they completely ignore you because talking to the cripple is too awkward? if youre there with somebody else, are people going to talk to them and ignore you, like youre not capable of interacting with them? is the venue even accessible, or do you get left behind as people move elsewhere? does anyone hang back to walk beside you, keep you company, or are you left to trail along behind them, alone? are you even included in what's going on? what is even the point of being there?

#sorry i have a wedding coming up on friday and im. freaking it #i dont think anybody there has seen me use a mobility aid #i dont want to answer a million questions. im already having a rough go of it #im gonna get to my moms house on thursday and im just gonna collapse onto the floor in a puddle of tears #shes one of the only ppl i can talk to about it... #sorry for being so negative today. im just struggling lately. ill head to bed now #vent #ableism #c slur #txt #disabled #actually disabled #spoonie #chronic illness #chronic pain #chronic fatigue #chronically ill

[youngpeachenthusiast]

yesterday i got outside of the house for the first time in over a week, to hang out with a friend.

i had a nice time, and it was only a few hours of chatting and walking around in the city center, but as of today i am absolutely destroyed. i can barely keep my eyes open or speak or sit upright. probably doesn't help that i haven't been able to sleep decently for a while now, and that i'm far too exhausted to eat properly. i am so tired. please send any help. idk. i don't know what i'd do for even the tiniest amount of energy right now.

#chronic illness #chronic pain #chronically ill #chronic fatigue #idk anymore #im so tired #spoonie #i have negative spoons btw #and the worst part is ive got stuff to do #late deadlines that i still have to meet #so much stuff #and i just have to push through the exhaustion and still try #i need one full night of sleep so bad #fuck this #i'm the kind of human wreckage that you love

[puppy-barkz]

i know i keep this blog mostly positive and i just generally try to be upbeat and cope the best i can. but. at times like this, i am just so exhausted of being chronically ill. i don't know what's wrong with me really. i'm so tired but i'm in too much pain and discomfort to sleep and laying down is definitely not a good idea. i'm just so tired. i've been trying so hard, i don't really know what i did wrong. i'm so tired.

#puppy barks #vent #negative #gerd #ibs #spoonie #chronically ill #i just want to feel physically okay for longer stretches of time. sometimes i really think i'm managing better and then a flare up hits + #and this one is so bad. i feel so awful right now and i just want to sleep

[artsie-rosie]

After several weeks of chores piling up and taking a major part of my mental load, this week I finally managed to get on top of my tasks again! I did loads of laundry and loads of dishes and loads of art and it made me feel like finally, I was on my way to getting things under control!

Aaaaand today I woke up with nerve pain. I overdid it again, didn't I.

Heh.

#i'm starting to genuinely believe that no I will not ever get things under control #that's just not in the cards for me #maybe my big main quest is not to get better until I am able to get things under control and do the things I want to do #maybe my lesson in life will be to finally understand that no i cannot do the things I want to do and just.... deal with it... #sorry for the negativity #im just sad... #spoonies #chronic illness #chronic pain #disabled artist #fibromyalgia #hypermobility

[disabilityhealth]

Please go easy on me. I’m having a bad decade.

#what even is this time period #cursed #doom #chronic illness #my text #disability #disabled #relatable #chronically ill #spoonie #negative #shitpost

[karidley]

Something I've noticed that's been helping me a lot lately is shifting the question from "what can I handle right now" to "what would make me feel better right now?" It makes me stop and honestly assess without pressure of Productivity. Sometimes the answer really is 'lie down in the dark under the covers' but quite often I'm finding if I detach my well-being from my productivity the answer is usually a list that looks like: eat something I can picture, drink water, consume salt (for my dysautonomia), take a shower, take my medication, put in earplugs for sensory overload. Some days it even includes 'go for a walk' or 'go to the library.'

For me to get here its required some previous experience with doing those things and knowing what works for me when, but it's made a huge difference. I've been regularly stopping mental spirals and sidestepping executive dysfunction walls that would have kept me in bed all day.

Also once I start taking of one bad it lightens the variety of bad feelings and helps me maybe target some other things that would now make me feel better.

That said, I have never been able to make myself better through brow-beating or berating myself about healthy habits or what I Should Be Doing. It started with the phrase "be kind to yourself" and I built from there. Taking a moment to answer the question "what would make me feel better right now?" with honesty (and patience/acceptance if the answer is that lying in bed would be the thing that would truly make you feel better right now) is an extension of Be Kind to Yourself.

Idk, thought I'd share in case it helps anyone.

#depression #executive dysfunction #adhd #chronic illness #spoonie #chronic fatigue #<- i end up taking a lot of naps for that one but this way they're not framed negatively #they're just the thing i need right now #therapy too therapy helps a lot #and practice #lots and lots of practice #when you're unwell your wellbeing can be like a puzzle and a balancing act rolled into one #of course it's going to take time to figure out what works for you and what doesn't #it sucks balls in the meantime #but things will get better #just keeping trying strategies #and in the meantime BE KIND TO YOURSELF #mental health

[stardust-maple]

Bro it is so hard to avoid negative self talk when you feel like shit mentally and physically and are just so so fatigued.

#invisible disability #chronically ill #chronic condition #chronic illness #chronic fatigue #chronic pain #spoonie #amps #cfs/me #disability #disabled #actually chronically ill #actually disabled #negative #vent #stardust maple

[canaryomenharbinger]

As much as JK Rowling writing an incredibly shit book is funny, people are ignoring how fully and unabashedly ableist it is. I've seen plenty talk about the racism, transphobia, etc, but never the ableism

#even in that twitter screenshot that's going around #the picture it shows is literally all specific ableist abuse #idk. something about seeing her use actual tags that disabled people use (like spoonie) in that context really got to me /neg #ableism

[cavity-cripple]

its really hard to want to get better mentally when i know physically everything will always remain difficult. doctors will never stop being horrible to me, i will always be expected to just Work Harder to stop having fatigue and pain despite having Worked Harder many times to no avail. ill never be able to do all the things ill be expected to do as an adult.

i want to live happily as a disabled person but ill never be able to do that unless people around me stop expecting so much of me, and i know that wont happen. i just want to keep doing what im doing right now and be so depressed i cant function because atleast like this i can let go of the expectations.

#bug speak #tw negative #cw negative #disability #chronic fatigue #chronic pain #cripplepunk blog #cpunk #spoonie #cripple punk #mental illness #mental health

[madefate]

literally every time i get home from work, i just have to snuggle right up into bed because none of my joints work !! though i'm only complaining a little because i'm v grateful for the soft blankets it's just that chronic pain experience u know ?? i just stopped to think about it & it's WILD to either just be working/commuting or lying in bed

#( ooc. ) #negative cw #i'm not really venting more like ! this is on my mind right now #& i KNOW other spoonies can relate to this #ur not alone !! i am also living my life in soft blankets & heating pads

[moonshinemagpie]

Japanese approach to healthcare

Doctors: It's very unusual for you to experience these symptoms when you are so young. That concerns us, so we're going to conduct a lot of exams immediately to find out what's happening and how to treat it.

US approach to healthcare

Doctors: It's very unusual for you to experience these symptoms when you are so young. That concerns us, so we're going to ask your insurance to approve a lot of exams.

Insurance agent: No. :)

Doctors: why not?

Insurance agents: She is young, so she's probably fine.

Doctors: She's very sick actually.

Insurance agent: Not if she's youngggg :)

#negative #medical #health insurance #us politics #i need to get out of this country #chronic illness #ankylosing spondylitis #rheumatoid arthritis #rheumatology #disability #disabled #spoonie

[rachymarie]

Idk if anyone will read this but here goes: I feel this overwhelming need to make meaningful change but struggle to orchestrate my limitied energies enough into something to effect that change.

And this is why we have so few schizospec/schizophrenic voices out there and all of sane-kind talking over us in slurs and tired-old unkind & stigmatizing portrayals and overwhelming amounts of (often outdated, mind you) advice/support groups aimed at carers etc, yet little for the actual sufferers trying to maintain sanity.

It's so hard to speak up for yourself in such a world on top of all the long-term difficulties of the illness such as fatigue, thought disorganisation/disorganized speech (you may have noticed I suffer from chronic rambling) / poverty of speech, cognitive slowing, avolition, anhedonia, let alone if positive symptoms still persist long-term also.

And if we step out of the accepted norm/don't remain calm and collected (when we have the right to be furious) and well-spoken, as close to "normal" as we can manage to cosplay - we get dismissed/don't get listened to.

When we are speaking up we need to be heard because it takes so much energy and fighting of symptoms (e.g. the aforementioned avolition, disorganized speech) and side effects for us to do so. And not be dismissed and scoffed at - called names like ridiculous when we open up about our issues or dare to ask for basic human decency and rights not to be discriminated against.

We do, however, need more support and nondisabled (or disabled, if you can spare the time/energy) people standing up for us (but in a thoughtful and educated way that doesn't drown our voices out - but harmonizes) because we are relying on the rest of society to look after us when we get too unwell (we may be just a few missed doses too many away from a hospital trip to undo all our recovery) and that's scary to be placed in the hands of a society that can be so misunderstanding of us.

If we were listened to more and taken more seriously some of us wouldn't suffer as much as we needlessly do just trying to get our voice out there and needs met and voice out there

I hope this all makes sense because I don't quite have the capacity to read back over it right now, thank you for listening. Probably a "flop" post but idc i just had to get thoughts out and hope it can help at least someone who reads/resonates

Edit-disclaimer: ok I did actually go back through and do some edits/broke up the huge chunk of textwall into smaller paragraphs for an attempt at readability

#schizospec #schizospec awareness #mental health #mental health awareness #schizophrenia #schizospec advocacy #schizospec voices #schizophrenic voices #disabled voices #frustration #struggles #disorganized thoughts #negative symptoms #mental illness #disability #listen to schizospec voices y'all #(not those kind of voices) #spoonie #rambling

[thedisablednaturalist]

I just don't want to be in pain anymore. I just want to wake up one day and not feel sick. Why does everyone treat me like I'm faking? Why is it so hard to get doctors to listen? Why is medication so expensive? Just to not be in pain? I keep thinking about how much I could do if I wasn't in pain. I would create, I would volunteer, I would work to improve this planet. But instead all I can do is lay in bed in agony. I can't do this much longer. I just want someone to take the pain away so I can live.

#fibromyalgia #chronic disability #chronic pain #spoonie #wheelchair #negative cw #i dont want to die i just want the pain to stop #my mom accused me of taking too much pain medication #because i sleep so much #she threatened to take me to the hospital and i almost let her #not that theyd actually be able to do anything to help me #and it would cost thousands of dollars #i feel so sick #maybe i should be in a hospital

[isobelruine]

Oh well, I made an able-bodied person uncomfortable (again)

#chronic illness #disability #endometriosis #spoonie #chronic fatigue #DO NOT assume I am doing better just because you see pictures of me outdoors #I AM NOT being negative when I explain the limitations caused by my incurable illness #journal de lutin