Chronically Chronicles

Call me Amoret ❥︎ POTSie, She/Her, 18 | May you each gain one extra spoon today | pfp made with Picrew: https://picrew.me/image_maker/188948

[deathofsix]

i don’t know if anyone has seen that absolute piece of shit article written by Emma James for the daily mail but here’s my thoughts as someone who is directly affected and suffering because of ideas like hers

i can’t provide alt text at this time but here’s a link to my thread on twitter

also ! no one truly wants to be disabled and what she doesn’t realise is outside of just some attention there is nothing truly gained and more often than not that attention will be negative and you’ll lose friends and family and support as a consequence of becoming sick.

it wont let me add a link but there’s a petition in @the_chronic_notebook ‘s instagram bio to have the article removed.

also something that i was made aware of after posting that thread is that one of the people ‘quoted’ was never interviewed by the author and those quotes weren’t said by her and are essentially fabricated. she’s trying to turn members of our own community against us

[space-city-traffic]

my favorite thing about researching POTS is that once in a while you have to weed out articles about. actual pots. like for plants. hello yes im unable to stand up rn but do you know what I really wanna read about right now? ceramics.

[applesandpavenders]

Sign the Petition

Get the Daily Mail to remove their stigmatising article about chronic illness

The daily mail has written a horrible article recently that invalidates anyone with an invisible illness or disability. The writer, Emma James, straight up calls them liars and attention seekers.

The comments section on this article when I opened it up to say something made me close it immediately. Gross and awful. This article belongs so far in the past it’s not even funny.

Please sign this petition to take the article down.

[chronicallychronicles]

so like... fuck the daily mail.

who wants to tell them that teenagers and young adults sharing the reality of chronic illness isn't because they want the attention. it's to get it through people like emma james' thick skulls that chronic illness is so fucking hard in the world we live in? it's because we HAVE to show our hardships otherwise we would be completely eradicated by a massively ableist society. it's because in the darkest hours a support system of other people going through your struggles is sometimes the only motivator to keep going.

who's going to tell them that the disabled being disabled aren't a fucking advertisement to endorse people to act sick? who's telling them that you can't just fucking link all disabled people who share their stories cant be held personally responsible for someone else's fucking mental health problems? who's telling them that making us to hide away and pretend like we don't exist to society is only gonna bite them in the ass later in life?

yeah, me, i'm telling them. fuck you daily mail. signed, chronicallychronicles, postural orthostatic tachycardia syndrome of four years, and the entire chronically ill community.

[wobblefloss]

STUFF I DIDN'T KNOW WHEN I WAS STILL ABLED...

It's not always obvious what's wrong.

.

Hi, Doctor. I'm tired. Like, all the time.

No. All the time. I wake up exhausted. I fall asleep at work. I fall asleep in the shower. I'm scared to drive.

No, Doctor. You don't understand. I'm not 'sleepy.' Not 'drowsy.' I'm tired in my bones. My blood feels heavy. The weight of my head hurts my neck. I can't think sometimes--I forget how to read--i get lost in familiar places! I say 'tired,' but I mean that 80% of my life, I feel like a sloppy heap of mud splattering and crumbling from too much moving, too much thinking, too much feeling, too much light, too much noise, too much everything. I'm confused and disoriented and like I'm in a terrible dream.

Oh.

That's a symptom of a lot of things?

Anemia. Migraine. Sleep apnea. Vitamin deficiency. Thyroid dysfunctions. Brain diseases. Heart diseases. Neurological disorders. Blood disorders. Autoimmune issues. Depression and other psychiatric conditions. Lifestyle choices: sleep, food, activity level. Environmental factors: mold, pollution, allergies.

There's a lot of testing to rule things out, huh? Could take years? Yes, I know it will be expensive. Yes, I accept that some of the tests will hurt. Yes, I commit to rearranging my eating/sleeping/exercising habits and seeing every recommended specialist.

Doctor, you don't understand. Either we find an answer, no matter how long it takes, or I am trapped outside of the world forever for no reason. Not testing won't make these horrible feelings stop.

Can you imagine feeling this way? Always? During your friends' birthdays? When your boss demands work? When you're home alone in the middle of the night trying to remember how the sink works? During the commute. During the shower. Taking out the trash. Feeding the cats. Staring at your bills. Talking with your family. For years... weddings, funerals, holidays, weekends, 4am, 4pm, when your loved ones need you, during every emergency, while you fail at your job, at your hobbies, at your relationships, at being your basic self?

Fuck, Yes! Doctor! Run! The! Tests! We are burning daylight!! Let's get this ball rolling! Journey of a thousand miles, begins with single step, etc!

I do want to feel better. This is not my imagination. It's not my fault. I am a reliable witness to my own life and I don't care how many tests 'come back normal.' Those must be the wrong tests to find what's haywire. I know something is wrong and even if we can't fix it, I must understand it.

.

I'm now in year 7 of trying to improve my situation. I know so much more about my conditions than I did. I am getting help. I still don't have a full picture. I'm still disabled.

But it's not like it was.

Please. Don't give up. Diagnosis can take years. Some people never get a firm answer. Regardless, you will learn ways to cope. You will meet people who help you cope. Don't give up on yourself. You are worth the effort.

.

Seems like something we should all know.

.

.

.

Disability happens to people without our control or consent. Every single disabled person has strong feelings about their own situation and I would not presume to talk about anyone’s thoughts but my own. But none of us chose to do life on hardmode, so if the world could listen this month, there’s a lot to say.

[chronicallychronicles]

oh, by the way, I graduated sdfjukhds

spoonie win, spite reigns supreme

[chronicallychronicles]

love the new theme girl! where have you been tho T-T

Yo! ✌️

Reassuring me the spring-y pink was a good switch from the yellow. And I've been around! Just haven't had many updates/ideas to share. But don't fret! I am still alive, happy to see y'all, happy to answer questions POTS or otherwise related. Now let us sit, (and I mean sit all you internal ableists who would stand too long/pass out) and let's enjoy the vibe ✨💐

[salt-baby]

my cardiologist broke up with me :(

they were like "you have a medically advanced case of pots that no doctor within a three hour drive can treat" and I was like "babe no come back we can make this work"

[wearingmystripes]

one of my toxic traits is experiencing immense pain and just not telling anyone at all

[magnoliabloomfield]

Imagine you are playing a game on hard mode and your HP gauge is reduced to one third of what it should be and you can never increase it. Now imagine everyone else thinks you’re playing on normal mode with as much HP as them so every time you express your frustration with how difficult the game is, they just think you really suck at it or you’re dumb because why else couldn’t you do something that was so easy for them? They try to give you cheat codes to help you out, but those don’t work in hard mode which just makes you look dumb again when you say you tried them and it didn’t help.

Imagine your friend invited you to go for a walk but you have a cinderblock strapped to each leg. They are walking too fast for you and they look back and say that if you tried hard enough you could keep up with them, which is true. They’re talking about all the lovely things they’re seeing on this walk but you’re breathing too hard to talk and you’re in too much pain to pay attention to anything else. At the end they find the walk refreshing, you’re exhausted and you’re going to be sore for the next few days. You have to cancel your plans for tomorrow because you’re physically incapable of doing it. You still have the cinderblocks on your legs. No one else can see them.

[luciferspartner]

having POTS is just being a human rainstick. we go vertical and all the blood goes WHOOOSHHH down with gravity

[absolutely-feral-deactivated202]

baby girl i have POTS i dont need a valentine i can make my own heart race

[noparlpf]

Hate how when I'm too tired after school it actually delays getting to bed because I have to rest a while before I can get up to eat and do evening routines.

[chronicallychronicles]

THIS IS THE TRUEST THING I'VE HEARD IN A CENTURY

[howtobeapersonwithfibro]

Chronically ill people are not "obsessed" with our pain/symptoms any more than healthy people are "obsessed" with their appearance, job, food, hobbies, or anything else that affects them on a daily basis.

If you're tired of me talking about my illness, imagine me telling you I'm tired of hearing you talk about your work and asking why you're so obsessed with it. Ridiculous, right? Of course you're going to talk about something you do every day.

[absolutely-feral-deactivated202]

My POTS isn't really that bad, I'm just lazy-

[chronicallychronicles]

haha gotta love going to the park where your pots all started tomorrow 😀👍💛

[spooniestrong]

Disability activist dies after United Airlines destroyed her custom wheelchair

"Mobility devices are an extension of our bodies. When they are damaged or destroyed, we become re-disabled," Engracia Figueroa said in July

This is unconscionable. 💙🥄

[void-ramen-bog]

TL;DR for y’all, she has a spinal injury that requires special support. After her chair was damaged beyond repair in the cargo hold, she was left stranded in the airport for five hours without proper support for her injury. She was given a loaner chair by the airlines, who refused to buy her a new chair, claiming hers was repairable. Over the next FOUR MONTHS without an adequate replacement, she developed exacerbation of her spinal injury requiring multiple hospitalizations, and skin ulcers from the chair she was given. The skin ulcers became gangrenous and spread to her pelvis and hip, which had to be surgically removed. Yes. part of her pelvis. had to be removed. However, the infection had already spread and become systemic, leading to her death on Oct 31st, less than four months after her chair was damaged.

also from the article: it is estimated that 29 mobility devices are destroyed or damaged EVERY DAY. and I’m going to assume those are only the ones that are REPORTED.

My mom has worked in the airline industry for three decades; I had no idea it was anywhere near this bad. Please be an advocate for your disabled friends and family, and support their concerns when they say no, actually. this isn’t okay.

[chronicallychronicles]

This is absolutely horrendous. I cannot even believe this is still an issue in today's world. How? I want to know very specifically how all these wheelchairs are being broken, and how airlines believe it is okay to just give out a generic substitute chair for these people. How is there nothing being done about this? Is it a handling issue? Is it a restraint issue? I want to know exactly how these wheelchairs are loaded, fastened, and where they are stored- because this is not okay.