#chronic illnesses

[matchakuracat]

Being asked to rate your pain on a scale as someone who has had chronic pain for several years is so difficult. Like how am I supposed to rate the pain I am experiencing from 1-10 when I have no idea what it feels like to not be in pain. Like what is 0? what is 1?? what is even 10???? What am I comparing it to???? My 5 can be someone else's 10 and their 10 can be someone else's 2, and how is a doctor or anyone else for that matter supposed to tell the difference? Maybe it's because I'm autistic and I'm just overthinking it but it literally makes no sense to me.

#chronic pain #chronically ill #chronic illness #physical disability #cripplepunk #cripple punk #crip punk #queer cripple #chronic disability #disabilities #disabled #disability #actually disabled #physically disabled #chronic illnesses #undiagnosed chronic illness #chronic illness community #undiagnosed chronic pain #joint pain #pain scale #chronic joint pain #chronic headaches #chronic headache #actually autistic #autism #disabled rant #chronic illness rant

[myalgicencephalomyelitiscfstom]

#chronic illness #spoonie #chronic pain #chronically ill #chronic illnesses

[furiousgoldfish]

As a person who spends a lot of time lying down and rarely does any kind of activities, I come off as someone who's taking a lot of 'me' time, or a lot of 'resting' time. However I have to assert that any time I spend recovering from an activity is not 'me time' or 'resting time', it's the time that is stolen from me. I can't do anything with this time. I am in pain, I can't move, my activities are limited to 'hopelessly distracting myself so that I do not experience the full horror of what's going on in my body right now'. I don't even get to have 'me time' because of how much of the time is stolen from me.

#chronic illnesses #chronic fatigue #chronic pain #stolen time #resting time #me time #does this count as self care lol #i don't think so

[gentlemanbutch]

I am so tired of medical professionals. I am so tired of having to try to speak in code so they listen to me, because apparently just outright stating my symptoms is the incorrect way of doing things. I am so tired of trying to give them enough details so they understand, but not too many details, because then they might think I’m dramatic. I’m so tired of them not bothering to learn any of my history and just being told I just need to eat less, or drink more water, or get out and exercise. I’m so tired of having to pretend to not know what I’m talking about. I’m so tired of arrogant pricks who don’t know what’s going on being too proud to refer me fo someone else. I’m so tired of being brushed off if I did my own research or have theories about what’s happening in my own body. I’m so, so goddamn tired of not being believed about the experience of my own life.

For all these providers with enormous fucking power that you use to abuse, gaslight, and dismiss patients who have spent years in pain — I hope you rot.

#ableism #medical trauma #medical gaslighting #health care trauma #chronically ill #chronic illnesses #chronic illness #disabled #disability #disability justice #fibromyalgia #pcos #endometriosis #mecfs #me cfs #chronic fatigue syndrome #myalgic encephalomyelitis #ibs #long Covid #covid #chronic pain #chronic fatigue

[420spoons]

Meme painting of a woman adorned in royal clothing and jewels. The text over the image reads, ‘Disabled people, watching all of the accommodations that were created because of COVID get ripped away as part of able-bodied peoples’ “attempt to get back to normal.”

#Spoonie #accomodation #disabilties #chronic inflammation #meme #chronic illnesses #Covid #ableism #mecfs #hidradenitis suppurativa #rare disease #Spoonie strong #sickandtired #neisvoid #sad memes #rheumarthritis #pots #sepsis #disability #actually mentally ill #actually neurodiverse #cancer #chemo #truth

[crazycatsiren]

My dear followers who wear compression socks: Not Your Grandma's hands down got the best selection, if you happen to be looking to add more pairs to your collection!

#disabled #spoonie #cripple punk #compression socks #pots #potsies #chronic illnesses #support small businesses

[4nemo1egend]

One of the things I don't see a lot around online is the talk about the frustration that comes with being disabled. It seems to easy to make your peace with the fact that you're disabled, that your body just has new limitations. I'm only talking from personal perspective here, naturally.

But then you get slapped in the face with new limits, new struggles, and problems. You realise you can't be like your peers. You can't be like everyone else. And you never will. And as someone with great ambition who is hard working and creative and who thrives from creating and showing people their art and work - it sucks. It sucks so much. It sucks to be given the time off of work you earned so hard only to be faced by the limitations your body and existence now have. To struggle with brain fog, fatigue, lethargy, aches and pains.

If anyone else is struggling with this and feeling frustrated with conditions out of their control, I see you and hear you. I may not be able to help but you're not alone. There's at least this one person out there who struggles too and who curses their existence every day alongside you. And ya know what? We'll figure it out somehow. And until then, we can be frustrated and angry and use that anger as fuel for our fight against the unjust universe.

#physically disabled #disabled #disability #disability struggles #fibro problems #fuck fibro #fibro flare #fibromyalgia #chronic illnesses #chronically ill #chronic pain #chronic fatigue #brain fog #actually disabled

[theprofoundcosmos]

a body that always aches.

bodys, car seat headrest / stay soft, mitski / looking like you just woke up, the front bottoms // n/a / girl-enraged, tumblr / the ballad of costa concordia, car seat headrest

#☆ my web weaves #web weaves #web weaving #webweave #webweaves #web weave #webweaving #poetry #car seat headrest #the front bottoms #mitski #on pain #on chronic pain #chronic illnesses #chronic pain #having a body that doesn't fit right

[over-the-edge-and-never-enough]

Especially the past couple of days. WTF body? Get with the program!

#fibromyalgia #chronic pain #spoonie problems #arthritis #chronic illness #chronic illnesses #fibro #chronically ill #orthostatic hypotension

[countfagula]

HAPPY NEW YEARS! May your spoons be plenty and your meds work!

#spoonie #cpunk #cripple punk #fibromyalgia #cfs/me #hypermobility #hypermobile eds #gi issues #GERD #acid reflux #ehlers danlos syndrome #potsie #pots #pots syndrome #chronic illnesses #chronic migraine #chronic fever

[wormslikeme]

Yearning ahead

Being chronically ill for me is wanting so desperately to ask for comfort (for me it’s mostly physical comfort I need) when in pain but being too:

A) anxious that people will reject me/take it the wrong way

B) not wanting to bother anyone, so I just sit silently in pain

C) wanting so desperately for someone (anyone at this point) to just like…..be physically there for me when I’m suffering.

Like when I have a migrane all I want is for someone to hold me and tell me it’s going to be okay. It may not make the pain go away but it would sure beat crying into my pillow and gripping it in a pitch black room while I try not to throw up from pain. Completely alone.

#chronic illness #pots #dysautonomia #pots syndrome #chronically ill #actually chronically ill #chronic illnesses #chronic migraines #migraine #migranes #chronic pain #invisible disability #disabled #in so much pain #please I just want to be held #owie #ouch ouch ouch

[peepawsammywammywoo]

Chronic pain can be like the ocean.

Some days it's nice and calm but some days it's rlly bad and not calm.

#chronic illnesses #chronic pain #cane user #disabled teen #ambulatory wheelchair user #disabled #chronic disability #very wise words #disability #fibromyalgia

[myalgicencephalomyelitiscfstom]

#chronic illness #chronic illnesses #long term illness #chronic diseases #chronically ill

[plaguedghosts]

Damn baby, you use essential oils to cure illnesses? Get the fuck away from me

#cripplepunk #cripple punk #chronic illness #chronic illnesses #spoonie #chronic pain #hypermobile eds #hypermobile joints #chronic fatigue

[gentlemanbutch]

haaaa just found out that the prick who told me nothing is wrong with me after I sent him my medical history and current long COVID symptoms has a pattern of doing this!

I mean I didn't think this was so controversial but do 👏 not 👏 go 👏 into the 👏 medical 👏 field 👏 if 👏 you're 👏 going 👏 to 👏 dismiss 👏 patients' 👏 pain

#ableism #medical gaslighting #medical trauma #medical neglect #disabled #disability justice #chronic pain #chronic illness #chronic illnesses #chronically ill #fibromyaliga #chronic fatigue syndrom #mecfs #me cfs #myalgic encephalomyelitis #ibs #long covid #covid #endo #endometriosis #ehlers danlos syndrome #pots #undiagnosed #undiagnosed chronic illness

[crazycatsiren]

Chronic fatigue culture is lie in bed, get up to eat something, go back to bed, repeat throughout the day.

#disabled #spoonie #cripple punk #chronically fatigued #me/cfs #disabilities #chronic illnesses