#because long covid chronic fatigue

[mosscaps]

the arguments against self diagnosing any illness sound very funny when you’re a chronically ill guy that’s been trying to get diagnosed for almost a decade with something 90% of doctors don’t even believe in or blatantly don’t care about and they will say directly to your face “yeah so you have all the signs of this and we’ve ruled out a lot of other things but we just don’t know enough about it so we cant diagnose you” and diagnosis wouldn’t even get you the resources you need because those resources barely exist in the first place slash we don’t know what would help because, see above, medical professionals deny the existence of this very real condition or set of conditions, and so there isn’t enough funding or research behind it. the ouroboros of a terrible healthcare system should not stop you from trying to determine what resources you need even if that means just saying you have the thing so you can move forward. if you need treatment for xyz symptoms, even if you do not necessarily have the condition most associated with those symptoms, you still need treatment. there is not a real house md out there cooking up the perfect diagnosis to your condition while violating many professional and ethical boundaries that i would absolutely let him violate if he could, you know, accurately diagnose and treat me. instead you have to do what you can do with what you have and if you disagree that it is necessary to “”play the system”” to get potentially life saving care, then you have never had the marginalized usamerican experience and i wouldn’t wish it on my worst enemy but if you keep insisting self diagnosis is the problem, instead of like, the horrors of capitalism, i wish you stuck in a doctors office for an hour and a half only for them to suggest you might feel better if you take a multivitamin or lose some weight.

[wanderingandfound]

I need people trying to convey the seriousness of COVID to stop dismissing the flu because the flu absolutely kills people, triggers chronic illnesses, and causes brain damage.

[mirasorastone]

Bad comic day?

Bad comic day

I couldn’t think about anything light hearted to draw about

[thatdiabolicalfeminist]

I struggled to find a good quote from this because it's literally all worth reading.

This is about myalgic encephalomyelitis, previously called chronic fatigue syndrome. This is my most debilitating illness. When my partner sent me this article, she said, "He's basically just describing your life."

I'd be grateful if even people without ME and especially healthy people would read this and consider sharing it. There isn't much general awareness about this incredibly debilitating illness, and this piece succinctly describes what it is, what it's like to live with it, and some of the challenges ME patients face.

If you hit the paywall, use this link instead: https://12ft.io/https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/

[unveilandresist]

one day, when I was a senior in high school, I was diagnosed with mono. I didn't feel right after. I would go to the nurse's office and take naps because I was so exhausted. (my mom was the nurse)

a year or two later i was diagnosed with fibromyalgia after my whole body started feeling like a bruise 24/7 eating gluten started making me feel horrible.

a year or two later I started identifying as chronically ill and as having me/cfs, as my symptoms shifted (more crushing fatigue based than chronic pain based).

I barely got through college. I had my first job after college, an amazing paid internship and I worked myself into the ground until I could no longer work.

it's been years and years now that I've been unable to work. I'm 32. I've never been able to have a normal adulthood. I live with my parents and I have lived years of my life mostly in bed.

postviral illness is real and the amount of people getting it from covid is actually unfathomable. millions of people.

I honestly don't know how to function sometimes - it feels like existing in a living nightmare to watch the hardest thing that's ever happened to me happen to people en masse for years and years.

and to watch people say it's not real, on top of that, giving up masking because 'only the vulnerable will die'. i'm doing everything in my power to not get sick again. i have no social life, i don't go to restaurants. it's not worth it. getting covid over and over could change the trajectory of your existence. I wear masks everywhere and haven't gotten a cold since at least 2019.

people have no idea how much they do not want to develop long covid.

[covid-safer-hotties]

Also preserved in our archive

By Nicole Karlis

A disease that's prevalent in women highlights the female sex bias in medicine

In modern-day culture, it’s common to complain about being tired. But for some people, being extremely tired is just one symptom of a disease that’s increased in awareness since the COVID-19 pandemic that can severely impact everyday activities: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Though the condition has existed for a long time, it can often manifest after a COVID infection, especially as an aspect of long COVID, in which symptoms linger for months or even years.

As research has shown, many long COVID patients either have symptoms similar to chronic fatigue syndrome or have been diagnosed with the disease. But just as long COVID remains a complex mystery, so does it’s so-called sister disease, chronic fatigue syndrome. Similarly, it’s a disease that researchers feel hasn’t been taken seriously in the scientific community. Not because it’s new, but because part of its female bias, coupled with its association with extremely debilitating fatigue, which is only one aspect of the condition. Even the term CFS can be misleading.

“The name chronic fatigue syndrome does not reflect people's symptoms as chronic fatigue is not the main feature of this disease, and for anyone to think that it is would diminish people's experiences,” Chris Ponting, a professor at the University of Edinburgh to co-lead of the DecodeME study, which is the largest ME/CFS study in the world, told Salon. “It’s also female dominant, there are five times more people within ME who are female than are male, also more people are more likely to have ME if they're older.”

That means, Ponting elaborated, that the typical ME/CFS patient is an older woman. According to the Centers for Disease Control and Prevention (CDC), having ME/CFS makes both physical and mental exertion difficult. Symptoms can include extreme fatigue, but also trouble thinking, severe tiredness and an inability to do activities, like shower or cook themselves a meal. There is no cure or treatment, and no official diagnosis process.

“Policymakers in this world are more often going to be younger males who have very little risk for this disease, and are perhaps completely unaware of the devastation that it has wrought across our population and still does through its sort of sister disease, long COVID,” Ponting said. “And without that understanding, without perhaps that personal knowledge, it flies under the radar despite affecting one in 200 people.”

One of the most peculiar aspects of chronic fatigue syndrome is its underlying biological mechanisms. In the world of health, people are frequently told that physical exercise is good. It’s an idea that has pervaded all of society around the world and for good reason. Scientific research has found that regular physical exercise reduces the risk of many types of cancer, heart disease, stroke and diabetes. But for ME/CFS patients, exercise is not usually recommended as a remedy — and can actually be harmful.

“We've been told from birth, if you're feeling out of sorts, go out outside and exercise, and we're told even in our last decades that exercise is good for us,” Ponting said. “But it is absolutely not true for this disease. It is actually reducing people's health, quality of life, and reduces their ability to move.”

As to why that’s the case, Ponting said the answer remains to be discovered, as the biological mechanisms of the disease are not entirely known. What is known, Ponting said, is that a majority of people come down with the disease after an infection. This could indicate that it’s the result of a problem with the immune system. There also appears to be a genetic component to the disease. In the DecodeME study, researchers are focused on studying the DNA of people with ME/CFS because they suspect some differences could reflect the biological causes of the disease.

Dr. Charles Shepherd, a medical advisor to the ME Association in the United Kingdom, was diagnosed with ME/CFS after he contracted chickenpox from a patient.

“I had a pretty nasty dose of chicken pox. All the sort of symptoms of chicken pox went away, but I just continued to feel unwell — not just a bit unwell, but quite unwell,” he told Salon. As a doctor, it was puzzling to him. He had debilitating fatigue that was exacerbated by physical and mental activity. Resting, he said, also didn’t help. He also had post-exertional malaise, which is a worsening of symptoms after minimal activity, which is a hallmark symptom of ME/CFS.

“It took me two years to get a diagnosis because I didn't know what was going wrong,” he said. “I wasn't taught about this illness when I was at medical school, and so again, very common still today, and I did all the all the wrong things from the point of view of management.”

Shepherd has been living with the disease for nearly 40 years. Yet he describes himself as one of the “lucky” ones who has found ways to manage his symptoms.

“The output of the prognosis is not good,” Shepherd said. “Probably only around about five to 10 percent of people make a full and sustained total recovery.”

Ponting said the fact that it occurs after an illness could mean that “the battery of the cell the mitochondrion has gone wrong in some way,” Ponting said. “But the shocking thing for me is that we don't know, and that's why we're doing the research.”

Shepherd has been able to find relief through “pacing,” which is energy and activity management. Currently, treatment usually also includes cognitive behavioral therapy to manage peoples’ symptoms. Graded exercise therapy, Ponting said, used to be recommended as part of the UK’s guidance, but isn’t anymore. The therapy included increasing a person’s level of activity, but it proved to be too harmful to people.

Through Ponting’s study, potential breakthroughs could be on the horizon.

“We'll show or shine a light down onto what exactly should be studied next,” Ponting said. “But what we're not going to do, unfortunately, is discover a drug that will help people manage their disease over the next few years.”

[velvet-cupcake-games]

Happy New Year!

New Year, new routes, huzzah!  This is a quickie, but if you backed at a level that gets you the Made Marion Mega-Guide, please take a gander under Studio Updates.

Studio Updates

I decided to shutter our studio website experiment because I didn't have the time or bandwidth to run a website along with everything else. It was too expensive for not enough exposure because holy geez do I not have time to play SEO games. velvetcupcakegames.com no longer exists.

This means I will be finding a new place to store updates to the Made Marion Mega-Guide. Those of you who backed the Mega-Guide will receive a new download key from Backerkit once I release the Will updates (I'm late on that, sorry!) and that copy will contain a new download location for updates.

I have started a company Bluesky, since that appears to be where people are finally solidifying after the Twitterpocalypse. You can find us as Velvet Cupcake Games:  https://bsky.app/profile/velvetcupcakegames.bsky.social

Development Updates

I've been dealing with some major hypersomnia (bordering on narcolepsy) since December, which eats into my work hours. I'm working with my new specialist to get on chronic fatigue meds, which can be helpful for long haul Covid folks, but the wheels of medicine turn slowly and we need to find a solution that costs less than $18,000 for a three-month supply.

That said, John Chapter 1 is coming along and I'm setting a hopeful end of January, definitely mid-February due date for its completion.

We will be in a ton of Steam festivals through Feb-March and will have a sale going for at least some of them (I just learned I might be able to run a discount for more than one fest if they overlap).  Watch our socials (Tumblr and Bluesky) for info!  I'm hoping to have a video preview of John's route out for the fests as well.

Why are all the Steam festivals that are a good match for us running Feb-Mar?  I don't knooooow, but I think the festivals themselves have noticed this and hopefully they'll spread themselves out more next year. :-p

That's it for Jan, see y'all mid-Feb!

[vro0m]

Quick off topic post :

October is dysautonomia awareness month

What is dysautonomia?

It's an umbrella term for a category of health conditions affecting the autonomic nervous system. The autonomic nervous system is the part of your nervous system that handles all the bodily functions you don't have to think about : heart rate, blood pressure, digestion, kidney function, temperature regulation, etc.

What are the signs and symptoms of dysautonomia?

Depends on the specific condition but if you frequently suffer from : fatigue, dizziness, heart palpitations, chest pains, fainting, low blood pressure, digestive issues, brain fog, exercise intolerance, urinary issues, and/or sweating issues, you might want to look into it.

What is POTS?

POTS stands for postural orthostatic tachycardia syndrome and it is the most common form of dysautonomia.

It causes symptoms usually upon standing up (or at least made worse by standing up) such as fatigue, lightedheadness, heart palpitations, an excessive increase in heart rate, brain fog, weakness, and sometimes fainting spells (and an overall feeling that something is fucking wrong and you're about to pass out).

It is super easy to diagnose but doctors often don't know about it : a heart rate increase upon standing of 30bpm if you're older than 20 and 40bpm if you're younger, in the absence of a drop in blood pressure, causing symptoms. Simple af. You just need a heart rate monitor.

Why raise awareness about it?

Because it is way more common than we think, incredibly under diagnosed, and it can be very debilitating depending on how severe it is (I personally had to drop out of uni for a year when I got symptomatic because I couldn't walk more than a few meters).

It can have some serious causes such as diabetes, Ehlers Danlos syndrome, and auto-immune diseases, but more importantly it can also be caused by viral infections and it's a known mechanism in Long COVID.

So protect yourselves and others : get vaxxed, get tested if you have COVID symptoms, wear a mask especially if you have symptoms, and don't become chronically ill because people told you it was "just a cold". It's not.

Cheers!

[fletchingbrilliant]

🌙some wildly cheap commissions!🌙

🙃 for some even wilder reasons 🙃

hey y'all. long post thingie but it's got cute pictures so please check it out

TRANSCRIPT OF POST

hey frens got something kinda somber to talk about. most of you are very aware of the existence of my beautiful fiance and co-creator of basically everything i do. zae and i are getting handfasted (marriage for pagans) in october, and have been living together for about 10 years. in 2021, zae got really fucking sick, and after a few false starts, was diagnosed with a rare for of vasculitis called granulomatosis with polyangiitis, GPA for short. it’s an autoimmune disease that causes inflammation in blood vessels and other tissues, ultimately stopping blood from getting to the parts of the body that need it, affecting many areas, but primarily the respiratory system. while the cause isn’t known, it usually presents in people in their 50’s or 60’s, but complications from a third bout of covid-19 appears to have made it emerge way earlier for our boy. at least, that’s what we think. his case is extremely aggressive, advancing faster than anyone could have expected. in zae’s case, it actually attacked his kidneys first, and then went after his lungs, causing both to threaten shutting down for good. he was extremely anemic and needed a ton of transfusions, narrowly avoiding dialysis, and we spent weeks in the hospital keeping him alive. he was placed on two different kinds of chemotherapy to combat the disorder. he lost his hair, went through even more fatigue and pain on top of what the disease had already put him through, and had to accept a plethora of changes to his life that will last forever. a lot of you out there have harrowing experiences of your own when it comes to chronic and potentially terminal conditions, too, I’m certain. “it’s not fun�� is an understatement. though there were a couple of really fucking close calls, zae’s GPA went into remission. his hair grew back fuller and more luscious than it had ever been before. (i later learned these are affectionately referred to as “chemo curls.”) remission for gpa is usually expected to last at least 5 years, potentially up to 20, before any symptoms resurface. but zae’s case was particularly aggressive, so of course he’s not so lucky. he’s relapsing now. his symptoms have been slowly returning, and it’s been decided that he’s going back on chemo. it’s no surprise that this shit is expensive, even with insurance. we’re still paying off the care he received last time because ‘murca. being disabled myself, work has been… let’s call it inconsistent, yeah? yeah, that’s a nice and comfortable thing to call it. no one’s doing well financially these days, so we of course have to get creative. long story short(er), i’m doing a commission special! for the next MONTH, i am offering fast commissions at crazy-low prices to try and help us create a cushion to keep us afloat and relatively comfortable while we begin the chemo process again. there’s several options for a variety of budgets, because i really hate the idea of seeking something for nothing, and i absolutely abhor having to reach out in this way. it makes me feel vulnerable and icky and… i’m sure you all understand that, too. i can’t thank you all enough just for following me, and engaging with mine and zae’s work. it may sound trite, but that really makes a difference to us, especially when we’re dealing with something so painful. so if you can’t or don’t want to partake of the sale, please know that you are still a huge help to us, and we seriously appreciate each and every one of you. like, so fucking much. thanks y’all love, fletch

END TRANSCRIPT

Commission Options:

Flash Sketches: $5USD/character

Comics: $5USD/panel - flat color

Comics: $10USD/panel - shaded color

Screenshot Redraws - $15USD/character (complex bgs, add $20)

all of this is posted with @zaebeecee's knowledge and blessing

please DM me if you're interested in something, and thank you again

more Hungry Games, fic fanart, and Persona stuff coming soon too

[fagcrisis]

this is already a super long post and someone else explained why this is completely fucking insane (THIS IS TORTURE THEY DO THIS TO PEOPLE TO TORTURE THEM) but i just wanna add my 2 cents

so i have long covid syndrome right, and so does my sister. what the both of us actually have is (among some other things in my case) is chronic fatigue syndrome. because its not a very well understood illness, there is a lot of grifts and just unhelpful/harmful advice out there about it. even if you turn to people who actually have it and have had it for years, their tips will likely be completely useless.

people sometimes recover, and then they will say its because of X thing they did (if theyre a disability influencer its X thing they bought) but the reality is that nobody really knows why some people recover from cfs and some dont.

researching this stuff for yourself is hard, but these are some things i do, if it helps

- never buy anything and never believe anybody who is selling you anything. if you read a blog post, or watch a video by someone with cfs and they try to sell you a product or god forbid a training course, disregard everything theyve said

- check every source, ask for sources on unsourced claims. google scholar is your friend, inputting some variation of cfs/long covid and the keywords in the claim is bound to bring up something interesting. if nothing else youll learn something new. it sucks that you have to do this. but you gotta

- dont assume you have to do everything people say you do. there is a lot of legit advice out there, by people who have recovered or simply learned to live with cfs. it still wont necessarily work for you. the most important thing is to be patient with yourself

- get mobility aids. seriously a cane was a gamechanger for me and a wheelchair allowed my sister to go outside for the first time in a year. this is the one thing i 100% believe everybody should do, even if you dont have trouble with going places right now, you might in in the future. just remember its an option

- try to keep yourself entertained by doing new things sometimes. on my worst days i get stuck on my phone for hours and it just makes me upset and doesnt help. u may think there isnt a lot to do in bed but you can always try getting into formula 1 or something. just, some kimd of new stimulatiom for your brain to chew on. you could take a pair of pants you were gonna throw out and dismantle it completely. pull out the seams. unravel the fabric thread by thread. ive done this and it helped. yknow. something

anyway absolutely do not solitary confine urself, take care, stay safe, talk to people and ask for help. it sucks. do not solitary confine yourself please

[jmtorres]

Hi, this is random, but would you mind sharing more about your gut issues/long covid? (I.e. diagnosis, treatment). I have chronic fatigue, and gut issues that are definitely linked to that, but all of my doctors are being extremely useless about it. (No worries if this is not the kind of info you want to share with a total stranger on the internet)

(This is in reference to my comment on this post)

@reptilerex I appreciate you recognizing the sensitivity of this ask, I am going to go ahead and answer it because I feel like the likelihood that you or someone you know (or even others of my readers) are struggling with long covid and finding adequate medical help vastly outweighs the minuscule probability that you've hacked into HIPAA records and are planning to dox me lol

so in the immediate aftermath of my first bout of covid (despite vaxxing and masking regularly, I'm up to two now 😭) my obvious symptoms were fatigue – going to the grocery store would wear me out for 2+ days – and a 20 year-old scar from a car accident reopened, which sounds like some scurvy ass bullshit, and I do wonder if the fact that my friend @niqaeli, who knew that long covid symptoms are highly correlated with MCAS symptoms and was encouraging me to start MCAS otc treatments like vitamin C supplements, helped. (worth noting that while I didn't hear anything about old scars reopening as a covid/post covid thing before it happened to me, but when I told people about it, they were like "oh yeah, that happened to me or someone I know" SO often) My doctor sent me to a wound specialist for that, and they kept poking it trying to figure out if there was some embedded shrapnel that they hadn't realized was in there originally, but ultimately it just healed back over much redder and angrier than the first time.

so then, the fatigue. My doctor had me wait three months because it wasn't officially long covid until three months. obnoxious as hell. I found out the DMV accepts long covid for a disability placard reason and got my doctor to write me a DMV form about how I couldn't walk hardly any distance. she was willing to do that before the three month mark.

I was Johnny on the spot coming back three months after, the first thing she did was send me for a chest x-ray because the obvious/expected reason for fatigue is you're not getting enough O2 in your blood. There was nothing wrong with my lungs and we were kind of at a dead end until I presented my doctor with more options.

I mean, I was kind of like, my PCP is being useless, I have a PPO, why can't I just go directly to a specialist, but it turns out specialist won't take you without a referral because reasons. I had heard rheumatologist is as good at figuring out weird vague shit so I tried to book there but when I told them long covid, they said that wasn't their department. They said I needed to go see an immunologist which sounded wrong to me, but there was a pretty good HIV specialist immunologist in the area that I tried to book with who said no that's not what long covid is. someone recommended a Long Covid Specialty clinic in a city that is 2 to 5 hours away depending on traffic and I knew I wasn't making that drive in my current condition so was like somebody local gotta help me.

so I went back to my PCP and said to her that I had learned from disability communities online that sometimes a rheumatologist can be helpful. And she said OK we can do some blood tests for inflammation markers to see if I can justify a referral to a rheumatologist. (and I thought of my weird scar issue and thought gee I better have some weird inflammation markers)

So I had some inflammation markers pop and I got a referral to a rheumatologist, and they were actually willing to see me. The rheumatologist ordered so many tests, like an unbelievable number of tests. I think they drew like eight vials of blood. Plus other samples. The rheumatologist was basically like let's look for anything and everything.

I had a borderline response on Calprotectin. To quote from the explainer in the test notes:

Calprotectin in Crohn's disease and ulcerative colitis can be five to several thousand times above the reference population (50 mcg/g or less). Levels are usually 50 mcg/g or less in healthy patients and with irritable bowel syndrome.

so I wasn't high enough to qualify for IBD outright from that test results, but I was high enough that it flagged to the rheumatologist, and I had reported a family history (brother has IBD), so he said that was enough to diagnose and started prescribing me for that.

The thing is, rheumatology is an ass backwards way to get an IBD diagnosis and I was having another symptom that I hadn't reported because I was a dumbass and this is the apocryphal frog boiling slowly thing. I was having fairly regular loose stool/diarrhea. if I had told my PCP that could I have gotten a referral to a gastroenterologist and gotten a less ass backwards diagnosis?

I hadn't told my PCP about loose stools for two reasons:

I didn't think it was relevant to the fatigue, and in fact, I still didn't think it was relevant when the rheumatologist called it, and I was really surprised when taking medication for IBD did actually turn out to help the fatigue

I knew I was lactose intolerant, so I thought it was already explained. However, the rheumatologist and I had this exchange:

Him: so do you still drink regular milk or just Lactaid?

Me: Lactaid

Him: then you shouldn't still be having diarrhea

Me:…

I can't remember the first med he started me on because I was only on it for a couple of weeks before we had to switch. (it helped a lot when I could tolerate it but about every three days I had to throw up and then I felt awful and didn't take the med for a couple of days and you can guess how that went.) the one that I went on long-term that actually worked without side effects for me was mesalamine/lialda. I also started experimenting with some dietary changes, the low FODMAP diet is intended for IBS not IBD, but you are still expected to have IBD triggers so I was playing around with that.

for a few weeks, I had incredible improving energy. It was crazy.

then I made what I can only now think of as a mistake in trying to be proactive about my care. because I had stumbled ass backwards into an IBD diagnosis and I felt like I should have gastroenterologist confirm it, and I went to go see my brother's gastroenterologist. he wanted to do a colonoscopy and he asked me to go off the mesalamine for six weeks so that he could see what my colon was like without treatment and it was the worst fucking six weeks of my life. Hated it. colonoscopy results: he didn't see anything fucking wrong and would not diagnose IBD or prescribe mesalamine based on what he found. I said, but the mesalamine improves my symptoms, what does that mean? He said, it means keep seeing your rheumatologist.

I went back to the rheumatologist and told him about the whole debacle with the gastroenterologist and he was like "so how did he explain your inflammation readings?" like CHECKMATE. And he concluded that any lesions I had must be in the small intestine, not the large intestine and so were not seen by colonoscopy.

I kept taking mesalamine. My improvement was slower after the break from it which sucks but I did get back to normal lab work within six months, hallelujah.

Follow up: MORE stuff that might have been avoided if I had gastroenterologist regularly, had gotten an IBD diagnosis from a gastroenterologist, or had mentioned my shitty symptoms in the immediate: the gallbladder bullshit this summer

I had my second round of covid in May and I didn't notice a lot of fatigue coming out of it, though I was more cautious with myself the second time around, but I was sort of holding my breath for what horrible nonsense is going to come out of this now? so then I had what I thought was a really bad case of Gerd that didn't go away for two weeks even though my Gerd usually resolves in like a day. I went to my PCP twice during this period and then ultimately ended up at the ER when I realized my pain was in my side not central anymore and I was worried about appendicitis. It wasn't appendicitis. It was my gallbladder. and it came out that night. overall, I am very happy with how the hospital handled the emergency for instance, I didn't realize until two weeks later that I seriously could've died because they were so calm about it the whole time but like they don't do same-day surgery unless death is on the line, let's be real.

but here's things that could have been helped if I had better gastroenterology care:

I didn't find this out until I was researching gallstones after the fact, and I would like to think a gastroenterologist would have warned me whereas the rheumatologist wasn't super aware of it but: IBD can lead to gallstones because one of the ways a cholesterol gallstone forms is, if you get an imbalance of bile and cholesterol in your gallbladder; your body wants to recycle bile by reabsorbing it at the end of your small intestine, but if you have IBD, sometimes it loses the bile instead of reabsorbing it, and then you get an overabundance of cholesterol, turning into a gallstone the size of a golf ball

I told my PCP it was a case of Gerd that wouldn't go away, but I didn't tell her I was also having diarrhea. Diarrhea is not a Gerd symptom. Maybe if I had just fucking told her she might've recognized or could've sent me to somebody who would have recognized it as a gallbladder symptom before it turned into an immediate emergency

tl;dr don't hide your gut symptoms from your doctor because you "think" you know what's wrong with your guts or that it's not related to your other problems or you're embarrassed or what the fuck ever just tell them that you're shitting yourself because it might turn out to be important

[istudyjapaneseorsmth]

Language Learning With Chronic Fatigue

[gif id: an animation of a cherry blossom branch swaying in the wind]

So! You're someone who's interested in learning a language, or you're already learning one but have trouble staying consistent because of your symptoms. I get it, I've been there.

For those who don't know, I have chronic fatigue and pain due to long covid. I've been struggling with it since early 2022, and I'm still learning how to cope, but I have enough knowledge at this point to put together a post about how to study whatever language you want to study and, y'know, not run out of spoons within a day.

Do keep in mind that I am one person with chronic fatigue! These tips may not help everyone.

P.S., I'll probably make another post like this in the future because I have terrible memory (thanks brain fog) and I probably forgot some stuff.

Take advantage of good days

[plain text: Take advantage of good days]

If you ever have days where you have more energy than usual, take advantage of those! For example, yesterday I had a ton of energy so I ended up studying for 3 and a half hours total.

That being said, keep in mind anything else you may need a lot of energy for in the day. I had to do laundry and shower yesterday, but I was exhausted after doing laundry, so I didn't get to shower. (In this regard: do not be like me.)

Keep track of what tasks drain you more than others

[plain text: Keep track of what tasks drain you more than others]

This can either be written down or just a mental note, but everyone is gonna have a certain type of studying or a certain area of study that drains them way faster. That could be something that just takes more brain power, or something you just don't like doing.

Reserve these things for the days you don't have to do anything else high energy, or just for your good days. I personally try to do more grammar practice on my good days, and more vocabulary on my worse days. And on my really low energy days? Listening.

Reserve at least one break day a week, more if needed

[plain text: reserve at least one break day a week, more if needed]

This one really depends on how fast you drain. I have Saturday specifically reserved as my break day; I don't let myself do any language practice on that day. That being said, this past week I had to take another break day just because I was tired from other commitments.

This one is super variable, but I do recommend at least one.

You don't have to study for several hours a day

[plain text: you don't have to study for several hours a day]

I think there's this weird misconception on studyblr and langblr that if you don't study your target language for the same amount of time you'd work a full-time job (or more!), then you'll never reach your goals.

That's not true! At all!

Depending on what your goals are, the only penalty for studying less per day/week is that you'll reach it slower. There's nothing wrong with that! It's your language journey, you can go at your own pace.

I hope this is useful for anyone who needs it, I know I would've liked something like this a long time ago.

[plain text: I hope this is useful for anyone who needs it, I know I would've liked something like this a long time ago.]

[afusionoffandoms]

The symbol most associated with fibromyalgia is the butterfly, as well as the purple ribbon, since a butterfly despite being almost weightless can cause pain if it landed on a person with fibromyalgia.

Fibromyalgia (fibro) is a chronic and highly stigmatised condition that presents as pain throughout the body - often inconsistent both in strength and location as well as resistant to pain medication - along with a slew of other symptoms - mainly intense fatigue and cognitive dysfunction, in addition to headaches, abdominal pains and cramps, depression, insomnia and general hypersensitivity both to touch as well as the other senses.

These pains can be a draining inconvenience, or so crippling it robs the person of the ability to walk or function.

Due to lack of research, it's believed that anywhere between 2-6% of the population suffers from it.

Many people suffering from fibro will say they often wake up more tired and in more pain than they were in when they went to bed. Experts often describe it as the brain losing its ability filter out pains the human body constantly experiences throughout the day.

One thing known for certain is that it's triggered by stress. It can be something as simple as a bad divorce, or a surgery, or a bout of illness, to trauma (either microtrauma over time or one definitive event). Fibro patients will say it's as if their brain finally had enough and started striking. Unfortunately there's no going back once that happens, as there is no cure, and fibro is likely to progress and worsen over time.

It's an illness that can't be proven through samples or x-rays, but rather it's diagnosed when no other cause can be found, and all other treatments have proven unhelpful.

We have records dating all the way to ancient Greece about people whose symptoms today are assumed by experts to be caused by fibro, though it wasn't until the 1900s that the illness got its own name and field of study. That's about all it's gotten, however.

Unfortunately most people with the diagnosis are AFAB, which means the illness is subject to sexism and is often ignored in the medical field, resulting in little research and funding, little knowledge, and a lot of challenges for people suffering from it. Recent numbers suggest that the gender disproportion is far smaller than presumed, however, likely due to other factors such as social stigma keeping men from seeking help.

Interestingly there looks to be a large overlap between fibro symptoms and long covid, which has in recent years caught the interest of researchers, so it's likely that the world will understand the illness more in the future, which will hopefully help people with fibro sometime down the line.

If nothing else, it might finally be recognised as the life changing illness it is, for currently there are still doctors who claim it's not real, and refuse to diagnose and treat it, instead claiming people with fibro are just lazy and overly sensitive.

It's because of these things that global awareness days are so important.

Increasing awareness about this barely understood and largely unknown disease, makes life easier for those who suffer from fibromyalgia both directly through general knowledge and understanding from people around them, to a larger scale where funding and research is vital to perhaps one day find a medication or cure. Or at least find an indisputable way to diagnose it.

Please consider sharing this in order to help with just that. 💜 May your day be as painless as possible.

[normal-with-adhd-is-a-joke]

I'm allowed to "give up" on treatment

I got sick with COVID in January of 2020 when I was 19 years old. Instead of getting better I gradually got worse and by April I was nearly bedbound with CFS/ME. I have been unable to work this whole time and was only able to return to college (part time) in 2022.

I've been in a physical health crisis since the onset of my illness. Even with resting pretty much all the time I was getting sicker and sicker. It was a race to find a treatment that worked before I got bad enough that I needed help that my parents couldn't provide. It was a race to get well enough to get out of my parents' house so that I didn't have to deal with the abuse between them and directed at me. It was a race to convince SSI that I was really disabled so I could get the money I needed to live on my own.

After I sorted out my last big health crisis I made the decision to stop seeking treatment for a time. I would try treatments or cures if they were offered to me, but they're not being offered right now because they don't exist. I don't know for how long, or what level of efficacy a treatment would need to have to convince me to give it a try, but for now I'm limiting doctor's visits to mental health stuff, checkups, vaccines, and treatment for any new or acute symptoms. I got SSI, I'm on two meds that are working to reduce my symptoms, I have a better powerchair now, and I'm living in accessible housing. My race is over.

My parents, especially my mom, were upset with this decision. They don't or can't grasp that my condition is not treatable despite me saying it all the time. My mom especially also doesn't understand that doctor's appointments aren't neutral for me, that they're usually negative and difficult. When I was constantly going to the doctor I was dealing with people who didn't understand my limits, who didn't understand ME/CFS, and were "willing to learn" at best. It was exhausting. None of the doctors I saw could provide me with more than they could find from an internet search, except for the specific CFS specialist who prescribed my current medications. Most doctors didn't even know the difference between chronic fatigue as a symptom and chronic fatigue syndrome and would just run diagnostics on me trying to find the "cause" of my CF even after I told them what it was. Every time I left an appointment I was depressed, hopeless, and angry. I was in a mental health crisis for days or weeks following each appointment because the doctor would show pity or even horror about how disabled I was and then not offer anything that would help me.

I debated whether I was even going to talk about this or if I was just going to stop. There's such a stigma around accepting your condition and moving on, especially if you're reliant on others or the government for care. But I want to say that regardless of what people around you are saying it's fine to be tired of doctors. It's fine to want a break or to want to stop altogether. People who have never dealt with chronic issues have a difficult time grasping how exhausting constant medical care can be, especially when you continue to be the same level of sick throughout the entire ordeal. You don't have to continue wearing yourself out to please people who don't understand what you're going through.

[unveilandresist]

extreme fatigue and fogginess?

hi! if you're super fatigued you should rule out sleep apnea, 80% of people with it are undiagnosed, 1 in 5 people has it. it's when your airway collapses when you are sleeping. it's unsurprisingly seriously bad for your health for you to stop breathing while you're sleeping and even apparently puts you at risk for a higher chance of 'sudden death' (terrifying, and why I am gonna give my new cpap machine a real try).

just a psa because i have had chronic fatigue (the symptom and also likely me/cfs, unless i make a miraculous recovery) and needed a sleep study for a long time and lo and behold i have it, i stop breathing 12 times an hour. some people like my dad have apneas like 45 times an hour. take it seriously. here's hoping the cpap helps with my fatigue, i have heard glowing reviews from several people.

also if you are in the US and able to fork over $180, i have heard someone recommend lofta, you can get the sleep test equipment sent to your house and a prescription for a cpap if you have it. you can't get a cpap without a script.

if you don't have it and/or it doesn't make a significant impact, many people are developing me/cfs as a result of postviral illness (even if you had asymptomatic covid, 60% of cases are and they still cause damage to your body). this also could be you, get some bloodwork and start ruling things out if you can.

[covid-safer-hotties]

Also preserved in our archive

By Betsy Ladyzhets

Since early in the pandemic, people with Long COVID have faced challenges in applying for disability benefits, including from their employers, insurance providers, and the U.S. Social Security Administration. Applications often take a long time and are denied even for people who clearly have debilitating symptoms, leading to years-long, arduous appeals processes. The same has been true decades prior to 2020 for people with other infection-associated chronic diseases.

To learn more about the disability insurance system, Betsy Ladyzhets spoke to Barbara Comerford, a long-time disability lawyer based in New Jersey who specializes in these cases. Comerford has represented people with myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or CFS), for more than 30 years, including high-profile cases like that of journalist Brian Vastag.

Comerford discussed how the process works, her advice for putting together applications and appeals, how Long COVID has impacted her practice, and more. This interview has been lightly edited and condensed for clarity.

Comerford’s tips for disability benefit applications:

Comerford recommends that people applying for benefits extensively document their symptoms. Medical tests such as neuropsychiatric testing and cardiopulmonary exercise testing are her recommended method for documentation, though she acknowledges that these tests can be expensive. Comerford suggests that applicants should be careful to find lawyers and medical providers who have experience with these cases and won’t dismiss their symptoms. During the appeals process, Comerford recommends requesting a company’s administrative record and combing through it for any evidence that they abused judgement, cherry-picked evidence, or made other errors in assessing the case. Make sure to follow deadlines for filing appeals, as cases are closed if documents are not submitted on time.

Barbara Comerford: Should we focus on disability insurance, or do you want to focus on social security disability, or both?

Betsy Ladyzhets: Both, because people [with Long COVID] are applying for both.

BC: Right. And often, people think they should only apply for one, [but they should apply for both.]

Most of the disability plans that people have are often through their employer. Those plans are known as ERISA plans, that refers to Employee Retirement Income Security Act. It was created in the 1970s… Congress created this regulatory scheme, and then immediately created a zillion loopholes that corporations can drive a truck through. Later, ERISA covered all employee benefits in general.

Insurance companies wound up selling policies to corporations saying, “You can get the best people if you offer incentives.” And what’s a better incentive than, if someone gets sick, they can collect a substantial percentage of their salary until full retirement age? These are the sorts of perks that… People think, “If something happens to me, I’ll be protected.” The promise of these policies is that they will give people, usually, between 50% and 80% of their pre-disability income if they satisfy the requirements. Well, that’s a big if.

I’ve been doing this for 38 years. And I can tell you that 38 years ago, these [disability claims] were not problem cases. I used to do them for free for my litigation clients… But over the years, and really starting after 2001 with September 11, all hell broke loose. They [insurance companies] began to get very aggressive. Every time there is an economic downfall, whatever it is, they get extremely aggressive. So you can imagine, with the onset of the pandemic, they knew what was coming.

I did, for many years, advocacy for ME/CFS cases. I represented thousands of people… A lot of my colleagues say, “Long COVID social security cases are almost impossible,” because they don’t know what to do with them. My office hasn’t found that to be the case. I think the difference is, you have to document these cases with as much objective documentation of symptoms that people have… Get neuropsych testing, cardiopulmonary exercise testing, and other tests.

I started doing webinars and seminars [about disability benefit applications] in 2020, because I knew this was coming. At that point, they weren’t calling it Long COVID, they were just saying, some people with COVID weren’t getting better. But I knew it was going to turn into another ME/CFS disaster.

BL: How have you found the rise of Long COVID has impacted your practice? Do you find you’re more in demand now?

BC: We’ve always had a high volume of cases. Quite a few of them were ME/CFS cases. We did a case, Vastag v. Prudential, in 2018. Brian Vastag, who was a science writer for The Washington Post, was my client, and I could not get over how aggressively Prudential was just dismissing him because it was an ME/CFS case.

And the same is happening with Long COVID. We do cases all over the country on Long COVID and ME/CFS. It’s my livelihood, so it’s important for me, but it also makes me a little crazy that people get treated the way they do and that they have to hire people like me.

One of the things that people get upset about is that they have to spend money to medically document their symptoms. And worse than that… I see these Long COVID clinics, with doctors who are completely ignorant on Long COVID, who surreptitiously write notes in the chart that they think it’s a psychiatric case. I don’t know how familiar you are with this.

BL: Unfortunately, I’m very familiar.

BC: It’s awful. Not only is it really hard on my clients… It triggers them to read things that might not be what they said or might not be pleasant. And the number of times that I have seen that and it has sabotaged cases! I have to reconstruct the cases and have the clients contact the clinic [and get them to make corrections].

Mental/nervous limitations exist in all of these [insurance] policies… They can limit someone’s payments to two years if the case is a psychiatric case or mental/nervous limitation with a DSM diagnosis.

BL: I wanted to ask also — there’s been a lot of research on Long COVID at this point, and there was a report this summer from the National Academies specifically in response to a request from the Social Security Administration about Long COVID as a disability, in which they found that this disease can result in inability to work, poor quality of life, all that stuff. Have you seen that report, or other research, like the growing body of research on these diseases, have an impact?

BC: I was asked to comment on that [report]. Part of the problem with Social Security’s initiatives in this regard is that every social security case goes through what they call “sequential evaluation process.” You have to go through five steps to determine whether or not someone’s disabled. And among those steps is [matching people to a “medical listing of impairments,” but the list doesn’t include major symptoms for ME/CFS and similar diseases].

Years ago, there was a ME/CFS ruling called 99-2p. It offered guidelines [for ME/CFS cases that don’t fit the typical Social Security process]. After that, I was asked to present to the national association of Social Security judges, there were 500 judges in the audience. And I asked, “By show of hands, how many of you are familiar with 99-2p?” Two hands went up.

Despite the guidelines, in practice, [the judges aren’t familiar with these diseases]. Until there is a time when we can come up with a firm diagnostic criteria for Long COVID, and we can say, “This is what you have to document for this illness.” … And it can’t just be a positive COVID test, because many people got sick before testing was prevalent or they got sick after people stopped documenting that they were positive.

The other problem for Long COVID cases is it’s not like cancer or a broken leg or herniated disc or something that people are accustomed to. Those people are not told they’re crazy. Those people are not told they’re imagining it. Those people are not told, “Well, we just don’t buy it.” This is what happens with [Long COVID] and ME/CFS. The psych component that they try to pigeonhole these cases into is really a master stroke by the insurance industry that spends billions of dollars trying to persuade people that anyone who files for these benefits is a crook or fraud.

BL: It’s infuriating, especially when you see how deeply people’s quality of life is impacted by these diseases.

BC: Yes, every part of their life is impacted.

BL: I see what you’re saying about needing diagnostic criteria. In this time where we don’t have that yet, what would you want to see the Social Security Administration or other government agencies do to make it easier for all these people who are applying for benefits with Long COVID and ME/CFS?

BC: They should [reevaluate] the sequential evaluation process, which has been there forever, and look at medically determinable impairment in the context of Long COVID and ME/CFS. These diseases can be documented by things like neuropsych testing.

I’ll quickly go through the five-step sequential evaluation process. The first step is, “Is the person engaged in substantial gainful activity?” That is something you can do predictably, something that will last at least 12 months, and something that leads to gainful work, where you get paid and you can report for a job either part-time or full-time. In Long COVID cases… you have to document that this person is not engaged in substantial gainful activity because they don’t know tomorrow if they’re going to be able to get up and get out of bed and take shower, never mind report for work.

If you satisfy step one, they go to step two. There, they ask, “Do you have the ability, in light of your disability, to perform basic work-related activity?” Sitting, standing, reaching, pushing, pulling, reading, concentrating, things of that nature. And, “Does the disability negatively impact your ability to do these things?” [You need medical evidence, which can come from] a physician’s evaluation from a Long COVID clinic, for example.

If you have that, you go to step three, which is where that horrible “medically determinable impairment” crap comes in. There isn’t {a specific listing} yet for Long COVID, although they’re talking about it. Frankly, we’re still waiting for them to do one for ME/CFS, so I’m not holding my breath. That’s the only step in the process where, if they don’t satisfy it, you can still move on to the next step.

The fourth step is, “Is this person capable of performing the work that they performed for the last five years?” Until June of this year, it was the last 15 years… So we go through each job they had, all their symptoms and limitations and why they can’t do [the job anymore]. If we document successfully that they can’t perform their past relevant work for the last five years as a result of their disability, we can then go to step five.

Step five, the burden shifts to the Social Security Administration. Social Security has to document that, in light of a person’s age, education, and work experience, that there is no work in the national economy that they could perform. [To do this], Social Security has a big graph called the “medical vocational guidelines.” And essentially, the younger you are, the more skills you have, the more education you have, and the more skills that are transferable, generally you are found not disabled. But the graph is not supposed to be used for cases that involve what we call non-exertional and exertional complaints together. Pain, fatigue, things of that nature are all part of the non-exertional limitation.

That is how we lift ME/CFS and Long COVID cases out of that graph. Despite the fact that many of our clients are very young, many of them are highly educated, many of them have developed skills that are not only transferable, but are also in high demand in the national economy — [we say that] because they can’t predictably perform sustained work of any kind, the grid should not be used to find them not disabled. But with all of this, every one of these cases, medical documentation of limitations is crucial. I can’t emphasize that enough.

BL: I know a lot of people in Long COVID community, they’ve already sent in their applications, and then it gets denied, and then they have to appeal. What is that process like, and how would you suggest people go about finding someone like you?

BC: It’s really important to do some research. You want to know if the doctor or attorney you’re dealing with has experience in these cases… I do [webinars and one-on-one education] for lawyers all the time, because I’d rather them hear what has to be done, and understand what happens if they don’t do it.

If I’m giving people advice on appeals… If it’s coming from a United States employer, you’re going to be governed by ERISA. That’s important because people might file a claim without knowing the exact company policy. Despite the fact that federal regulations require employers to give that information to employees, when someone gets sick and files a [short-term] disability claim, they are immediately cut off from the employee benefits portal [that has all the exact policy information]. So then I’ve got to write a letter to the employers, and fight to get that information.

You can’t even get discovery in these cases… Sometimes they will award benefits, and then six months in they’ll say, “We no longer believe you’re disabled.” Under ERISA, [employers and insurance companies] get all the advantages.

BL: It seems like people should know, if you’re filing against an employer, to save that policy information before you lose access to it.

BC: When you get the notice of a denial, you can request a complete copy of the administrative record. You are entitled to see everything that the insurance company had on the case, and under federal regulations, they have 30 days to produce it.

And then you have 180 days to appeal that [denial]. People say that’s a long time. It’s really not. Because you’ve got to go through thousands of pages of documents. You’ve got to document where they abuse their discretion. It’s not enough to have medical evidence… [The standard you have to push back on is that] the insurance company or the employer has a “reason” to deny the claim.

The lawyer’s job or the claimant’s job is to show all the examples they found in the administrative record that show [mistakes or poor judgement on the part of the insurance company or employer]… Sometimes, you will see reports of experts that they’ve retained to review the case, and the expert will say, “I think it’s a payable claim.” And then the next thing you find is them looking for another doctor who’s a little more receptive to their suggestions. If we see they’ve ignored the opinion of one of their experts, that’s an example of abuse of discretion and arbitrary, capricious conduct. Cherry picking the evidence is another thing you often see in these cases.

BL: So it’s not just sending your own medical records, you have to show that the company has messed up.

BC: The insurance company or the employer, whoever is paying, you have to show that they abused their discretion.

BL: Is there anything else, any other advice or resources you would give people?

BC: This is really important. If it’s an ERISA case and they do not get that appeal in within 180 days, they’re foreclosed from pursuing it any further… [It’s a big mistake] if you blow those time deadlines.

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