#chronic

[in-sufficientdata]

This can be a huge source of medical trauma and it's so cruel that it's being imposed on people by the medical establishment itself. How can they help but feel anything but helpless? There's no fighting that.

I can't help but think of this from my own perspective as a fibromyalgia patient who keeps having to fight being thought of as (or even being labeled as) drug-seeking.

I am literally just trying to live life closer to the standard that 'normal' people have every day.

Why is it in any way fair that most people are mostly pain-free and capable of doing the things they want to do, but I have to suffer with pain on a daily basis that is at minimum, on a very rare, very good day, at level 5?

Why is it when I report that my pain level is at level 7, 8, 9, I only get doctors side-eyeing me and explaining my OTC options?

I have had chronic pain since I was 8. I'm very fucking aware of my OTC options, so no thank you, doc.

And when I spend 20 minutes explaining in detail that my daily pain has noticeably increased and changed in quality since around January 1st, why should I have my PCP giggle at me every time I say that I need help with managing my pain and learning ways to deal with it?

It felt incredibly invalidating and I wish he would have said, look, I don't have the expertise to help you, so here's a referral to a pain specialist.

I only found out there was a such thing by trying to research the topic after this on my own!

So yeah, it's not just the insurance companies, it's the doctors, too.

It's almost like having a profit-motivated medical establishment hurts patients.

[somniphobicfox]

My aunt called me for a family outing, and I refused because my pain was reaching higher levels and I knew it was flaring up and I just wanted to go to bed. I told her about it, and she goes "I'm tired as well, aren't I going out? I'm so much older than you, I'm still going out with all of you- "

I'm disabled.

I pleaded with my mom to convince her - I was feeling terrible. My pain was sooooooo high I was in tears. And to make matters worse, she told "if you're not coming, then we're not going as well." I felt so terrible.

EVERYBODY told me to suck it up and come along. A cousin was even so sure of why I was hurting, and blamed me for my pain. Told me that I should've listened to her and not done x and that's why I'm in pain.

I'm disabled. I have chronic pain.

And my own mother gave in to peer pressure and I was surrounded by ableists convincing me, blackmailing me to go along with them just so that they don't have to face the guilt of leaving someone behind. It was one of the worst days of my life.

I ended up going, and I cried that night because I was in so much pain. I had been on a bumpy car ride while my arm was flaring up.

Able-bodied people, if you're reading this — please understand that when a disabled person tells you to go somewhere without them, just go. Telling them that you would stay would only make them feel more terrible. And also, believe disabled people when they say they're hurting. PLEASE. Its the one thing we ask of you.

[kanachaka]

Y’all just shift this ain’t that hard 😂😂😂

[shybreadgarden]

Can’t change your sheets? Just change your pillowcase.

Basically this is a thing I do. Changing sheets can take a lot of physical and mental energy and is sometimes just not possible. But if you have the energy to change your pillowcase it can do wonders. Especially if you have allergies or asthma. But also because your pillowcase just has a lot of junk in it from your snot and drool and tears. So sometimes I’m exhausted and I need to change my sheets but I just can’t. So I’ll change my pillowcase.

[createyourownnarrative]

How do I navigate this new life? So many questions plague my mind. Ironic. What happens when you start to question yourself? What do you do, when you can’t even trust yourself anymore? Petrified on a daily basis. Do I have a future left to salvage; my career, mygoals. I’ll say one thing. I didn’t expect to lose my whole identity. Profound loss. I grieve everyday. Not only mourning my former life and identity and plans, health, and body, but also fearing that I may never recover.

The last 3 years, has completely changed everything, including, the now, lack of trust and faith in our healthcare system. It’s difficult enough dealing with the social stigma, not being believed, gaslit, dismissed, invalidated, and blamed for my condition. But who do you go to, when your doctors can’t even help you, and some just won’t, and many just aren’t equipped or educated to deal with the new post viral condition. It’s been an enigma. The data and research has been sluggish, and US government funding is minimal.

The world moves on, but where does that leave about, what was it…17….or 22 million Americans? The data varies, but the scale is large. Massive. The largest mass disabling event in HUMAN history. And everyone ignores that it exists. Officials silence scientists and doctors, government censors social media, one minute it’s real, the next? no big deal. Inconsistency. Negligence and Lies.

Long Haulers of the world, does anyone else feel betrayed? Betrayed by people we are supposed to trust to have our best in mind, especially when it comes to our health institutions? I do. Everyday. I feel cheated and robbed of time, years off my life. All because of MONEY. Greed. Capitalism. I said it. The fucking cunt elephant in the room. Think of how much money certain people made during the pandemic? (If you know, you know) Of course I feel robbed. Of my life. And millions of others.

This is murder, irresponsible, and negligent.

And all WE want to do is FEEL better. Not be sick anymore so we can continue our lives. All while they continue to censor us.

[endonow]

You can never win

[llovelymoonn]

favourite poems of january

tony hoagland note to reality

henri cole middle earth: “myself and cats”

minerva s.m. kamra chronic

stacie cassarino zero at the bone: “in the kitchen”

bonnie jo stufflebeam barking dog nocturnal

ron silliman the alphabet: “you, part i”

sara borjas a heart can only be broken once, like a window

karen an-hwei lee song of the oyamel

louise glück afterword

kai nham follow the moon

elisabeth houston standard american english: “re-peat! re-verse! re-hearse!”

victoria stitt the carolina quarterly: “autumn convalescence”

noor ibn najam you smelled like an animal

ben still concept pest control

ray dipalma obediant laughter: “after midnight”

sasha pimentel cats

thanh-tam nguyen a lit match to burn what your country doesn’t remember

sarah abbas collecting words in attempt to keep them the same

julia wong kcomt (tr. jennifer shyue) woman eaten by cats

lisa jarnot ring of fire: “the bridge”

torrin a. greathouse i am beginning to mistake the locust’s song for silence

siaara freeman when i speak of hunger

vandana khanna train to agra: “evening prayer”

ouyang jianghe (tr. austin woerner) mother, kitchen

kayleb rae candrilli sand & silt

antony hecht an offering for patricia

sara ellen fowler shed project notes, august 30, 2019 - la madera, nm 

vincent hiscock voice in the air: afterthought

margie piercy mars & her children: “the cat’s song”

eva chen how to bleed a ghost

sayuri ayers cordella magazine: “in the season of pink ladies”

buy me a coffee

[cannanation]

Feast your eyes on this thick & gorgeous award-winning Type 2, Astral Works 💜 Dripping in Myrcene and Terpinolene, she has always been a fan favorite for those times you want to have a deliciously relaxed and focused experience.

[turtwig387]

I'm not quite sure how to explain it but I feel like being / having been a Sick Kid (tm) taught me that pain is just something you have to go through.

Because as a kid you don't have a choice, and the bad things happen, the sickness whatever it is, and then usually uncomfortable or painful treatment of whatever sort. (I won't list examples, that would just be triggering)

So you learn that bad things are just something you have to deal with

And it's weird because I feel like as an adult (and probably before then), I don't always realize I have a choice in most situations, especially outside of medical things.

And I don't always realize I don't HAVE to sit through OTHER bad things usually. Because bad things are just something you have to deal with.

I don't always realize in life that I have the choice to say no or to walk away. (Or other examples). Because bad things are just something you have to deal with. Pain is just something you have to go through.

There's no call to action, this is just a thought I had, and maybe a sort of vent. Maybe other people feel the same or similar.

[senvurii]

dont cry because if you cry then i cry

[odduwa]

LETS GOOOOOOOOOOOOOOOO!!!!!!!!!!!

[in-sufficientdata]

I have oh so many examples 🙃

Re: fibromyalgia:

➢ From doctors —

"All children get pains in their legs, they're called growing pains."

"Why did I order this treatment? Because I'm the doctor and I know what I'm doing."

"You're so much more tenacious about exercising than my other patients."

Reporting generally increased pain levels to my PCP and receiving an explanation of why they don't treat fibro pain with opioids in return.

Being (literally) laughed off by my PCP while explaining my pain symptoms when I was seeking advice on how to deal with them.

Being forced to do my own research into mitigating my pain because I was laughed off instead of helped.

Finding out while researching that there's a such thing as a pain specialist rather than being told that by my PCP.

➢ From people in the community —

A gym teacher laughing at me when I said my neck hurt because he thought I was lying to get out of gym class.

Making it a point to look at me while I'm resting on the sidelines & rolling their eyes each time they notice I'm looking back.

Passive-aggressively commenting to their companions as they pass by that it's a shame people who don't need the riding carts use them.

Actually coming up to me to inform me that riding carts are for people who need them.

"What do you mean you're in pain? Oh, honey. Wait until you're my age, then you'll know what pain is."

"Don't give up yet! Pain is just weakness leaving the body!"

Societal messaging that reinforces a Puritan work ethic.

I was going to do others I hear re: autism, ADHD, bipolar, etc. but I'm exhausted from remembering all that now. 🥲

[somniphobicfox]

Hello! I'm thinking of getting a mobility aid but I'm not sure which is right for me.

If you're comfortable with it, can you describe your disability and the mobility aid(s) that you use, along with how they help with your condition? I think it would give me an idea on what I would be comfortable with.

Reblog for boost :)

[kanachaka]

Hey guys friendly reminder to stop being stupid and actually persist in your manifestations and like maybe believe in them just a lil instead of complaining and acting like you don’t have them 😊😊!! You do!! You sound dumb as hell being like “I don’t have my manifestations” “it’s so hard to manifest” WHILE YOU LITERALLY HAVE EVERYTHING YOU WANT RIGHT IN FRONT OF YOU. STOP REJECTING YOUR DREAM REALITY PPEASEEEE

[cpunkwitch]

Hey, it's the anon that asked if chronic pain counted as a physical disability

I guess I just wanted to ask a few other things because you're like the first person who has actually answered my questions on this kind of stuff— I'm sorry if it becomes annoying or if my questions are stupid, I really struggle with research and stuff, so if this stuff is easily found on google or something then im sorry

I wanted to mainly ask what counts as debilitating? I mean my chronic pain tends to come in episodes that last a few minutes to a few hours (well the most noticeable of it, which is my ribs. But I do tend to havesort of aches in my joints, knees((are they joints?)), hip and some other places pretty commonly, and that usually lasts a few hours but I'm usually good at ignoring that), sometimes it can happen every day for a week and sometimes I can go weeks without experiencing or noticing any pain. I can still do things that most people do I think? Other than running or walking up hills, that usually takes away all my breath and makes the pain really bad (so bad I've had to lay on the floor for up to 10-20 minutes because I walked up too many hills). I don't know if that would count as debilitating

For further context, I am quite young and I don't have any diagnosis, I haven't seen a doctor over it because my parents don't believe my pain is real and often say it's growing pains (I don't think it is, since it started back when I was like 7-9, so before I started growing) so I don't really know much about this or my body really

Again sorry if this is a sort of stupid question, if you can't answer it or don't feel comfortable answering it that's perfectly fine ^_^ /gen

holding you gently (if touch is okay)

i dont think you understand anon im autistic all i do is research please please ask me to your hearts content! /silly

going bit by bit so its easier on my dyslexia, what counts as debilitating? subjective to the person but overall; debilitating means a condition or otherwise symptom of some kind causng a person to be weak, effects their usual functions or otherwise hindering, so for something to be disabling / debilitating and to count as such, it just means it hinders you in some way and generally makes you weaker in a "more suseptible to" way, such as chronic pain making it so you cant get out of bed i the morning, you cant lift heavy things like chairs etc.

it common for chronic pain and other chronic conditions to come in episodes my moms chronic migranes for example only happen about once a month. it still counts as chronic so long as its reoccuring and when it does occur if it hinders you in any way then it very much counts as debilitating and therefore a disablity.

the pain level doesnt have to be consistent nor does the time length, just that its reoccuring in some way.

knees are joints yes. when it comes to joint issues and pain its likely that form of chronic pain is caused by a type of arthritis, fibromyalgia and/or some other autoimunity that is known to cause that. not certain but i just felt like that might be worth noting.

my chronic pain causes me issues with walking just like that, people without this condition dont often struggle with losing energy nor feel pain after walks or runs, uphill or otherwise, unless they have something else goig on with their body. if it effects you lower body its no surprise your mobility in that area is effected in some way too. i got myself a cane to help me with this as i walk uphill to work often (at least its one reason it helps me)

that hinderance alone, effectig your stamina, counts as debilitating, it might now sound or feel as severe as what other people expirience but it counts

it sucks that people equate age to conditions and then dont believe young people like us when we have issues, but age has nothing to do with it, you can expirience anything like this at any age for a number of reasons. i was born with a defect i my spine we didnt find until i was 18-19 and id been i pain for well over a decade now.

you'll find its hard to get people to listen to you now, but once you know what to say, for example telling them how long that this has been going on and how it effects you, even what you suspect it night be and dont let them derail from exploring those possabilities, you can /get/ them to listen to you.

sucks hard that people wont listen in the first place, especially when they think they know everything. but youre the only one whos gonna know and understand your body best because only you can listen to it when it sends you signals like pain.

(i genuinely enjoy these kinds of asks i love getting to ramble)

[createyourownnarrative]

I am feeling so many emotions right now. I have to use talk to text because I can’t type right now. I am having tremors and my vision is very blurry. Also I tried to type a message to a fellow long hauler, and I messed up every single word I tried to type.

Anyway, that’s not entirely the reason why I just feel so devastated right now. I was on social media, and a post popped up in my feed from a woman, I know. around my age with cancer. I really feel for her. She seems to have a great deal of love and support and but going through treatment.I can only imagine what she’s going through. I see posts of her creating things. playing music, performing live music, leaving the house, going out, and just being able to make her appointments. Just having appointments to go to… treatment options and support. Despite her condition and health struggles she is still creating and living her life. although I know social media is not quite what it seems.

I broke down into tears. I felt like a failure. I asked my boyfriend what am I doing wrong? I can’t even type or get out of bed at times, my absences at work are growing as I feel my condition worsening, and here is this woman with fucking cancer. look at all she is able to do with cancer. and I just sit on the couch or lay in bed, unable to move and severely depressed because all I want to do is create and live my life. and at times I feel disabled. And you can’t even tell.

I feel self loathing this morning thinking, “ well it’s not like you have cancer or something else”. Maybe I’m gaslighting myself today. I just feel so dead inside. I feel invisible.