#because long covid chronic fatigue

[consultingreaders]

it is disheartening to know that approximately 45% of the voting population may vote for a racist, fascist, serial sexual assaulter, and it is also disheartening to recognize that most of the people who are not voting for him still will not mask in public places, despite the huge burden this places on immunocompromised folks. and if you're not voting for her because she's not left enough but you're also not masking, I don't take your activism seriously

[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

[riverofrainbows]

My mother: "Ooh why do i have such a bad cough, i never get sick"

Girl you have lung damage because you went and caught yourself covid, and then you went and caught yourself an unknown respiratory illness, and then you overexhausted yourself, and now you're hacking up a lung. Who would have thought.

[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/

[swampgallows]

There is more COVID-19 transmission today (January 2024) than during 94.7% of the pandemic.

💉 Please get the updated (new, not a booster) Covid vaccine. If you're in the US, ask your local pharmacy about the Bridge Access Program for free vaccines. You can also search vaccines.gov then select Bridge Access Program participant.

If you do not want an mRNA vaccine for whatever reason, consider Novavax: it is protein-based like other typical vaccines from the last few decades, and many (including myself) report minimal side effects. Talk to your doctor if you have questions or concerns.

😷 Wear a mask in public and/or any enclosed areas. "Mask" means a respirator of KN95/N95 filtration or higher, not a cloth or surgical (blue) mask. Covid is airborne, so an airtight seal and particulate filter is necessary for protection. Different kinds of respirators are used for everything from toxic fumes to asbestos removal; when worn properly, they greatly reduce risk.

Here is a guide for proper use and fitting of a respiratory mask.

Here is a short video by 3M (respirator manufacturer) on the importance of fit-testing.

🧪 Have tests ready. With the new variants it can sometimes take 5-8 days to test positive, so be sure to test twice, 48 hours apart. If you're in the US, you can get 4 free rapid tests sent to your home through USPS. Local schools and libraries also may have free rapid tests. If you qualify for the Test to Treat program, you can receive free at-home NAAT tests and treatment for both flu AND Covid, and access to telehealth. The earlier you test positive, the more likely you will be eligible for treatment with Paxlovid.

🔁 If you can afford it, air purifiers and HEPA filters can help reduce transmission. Making a Corsi-Rosenthal box is simple and inexpensive. If weather permits, keeping windows open helps. Ventilation allows fresh air to circulate.

👃 Nasal sprays and CPC mouthwash are other useful prophylactic measures when used in conjunction with PPE and other modes of mitigation like masking and distancing.

🚬There is still a risk of Covid when outside, similar to exposure from secondhand smoke or a fire. Since Covid is spread through aerosols, it can hang in the air like smoke.

🐶 As with other coronaviruses, many household pets can get Covid. If you have been exposed, avoid contact with animals.

"But I'm not old or weak. Why should I care?"

☣ Covid can still kill you or disable you for life, even if your initial sickness is "mild". Even if you are young and have no preexisting conditions. 90% of the original "long haulers" had "mild" cases.

🩺 Covid increases your risk of stroke, blood clots, and heart disease by 2 to 5 times within a year of infection. It can also cause brain damage, which is part of the loss of taste and smell and cognitive symptoms like brain fog.

🩸 Covid is able to infect multiple organ systems because it travels through the bloodstream and attacks the mitochondria, leading to dysfunction and chronic fatigue.

⚠ Reinfection doesn't make your body better at fighting Covid; it just does more damage to your immune system, akin to HIV. A damaged immune system is worse at fighting off illness, more susceptible to infection, and can lead to serious complications like pneumonia. And with every reinfection, your chances of developing Long Covid increase. Therefore, the best protection for your immune system is to avoid getting Covid as much as possible.

I know everyone is tired of this. But if there was any time to be vigilant, it is now. Please, let's protect each other.

[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

[covid-safer-hotties]

Even mild COVID-19 cases can have major and long-lasting effects on people's health. That is one of the key findings from our recent multicountry study on long COVID-19 – or long COVID – recently published in the Journal of the American Medical Association.

Long COVID is defined as the continuation or development of symptoms three months after the initial infection from SARS-CoV-2, the virus that causes COVID-19. These symptoms last for at least two months after onset with no other explanation.

We found that a staggering 90% of people living with long COVID initially experienced only mild illness with COVID-19. After developing long COVID, however, the typical person experienced symptoms including fatigue, shortness of breath and cognitive problems such as brain fog – or a combination of these – that affected daily functioning. These symptoms had an impact on health as severe as the long-term effects of traumatic brain injury. Our study also found that women have twice the risk of men and four times the risk of children for developing long COVID.

We analyzed data from 54 studies reporting on over 1 million people from 22 countries who had experienced symptoms of COVID-19. We counted how many people with COVID-19 developed clusters of new long-COVID symptoms and determined how their risk of developing the disease varied based on their age, sex and whether they were hospitalized for COVID-19.

We found that patients who were hospitalized for COVID-19 had a greater risk of developing long COVID – and of having longer-lasting symptoms – compared with people who had not been hospitalized. However, because the vast majority of COVID-19 cases do not require hospitalization, many more cases of long COVID have arisen from these milder cases despite their lower risk. Among all people with long COVID, our study found that nearly one out of every seven were still experiencing these symptoms a year later, and researchers don't yet know how many of these cases may become chronic.

You can also read the full article at our covid archive!

[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.

[talkethtothehandeth]

Here is a video that talks about the reality of living with Long COVID. This is another reminder that this virus is still prevalent and just as deadly, if not more. COVID has killed nearly seven million (documented cases) people worldwide. You are not immune, you are not invincible, and this is something you should still be taking seriously. It’s not in the past, it is still spreading and mutating and harming and disabling and killing.

Wear your masks, get the vaccines if you can.

Video Length: 1m 16s

Transcription:

"Hi, my name is Hannah, and COVID took my life from me. I was 23 when I got sick in August of 2020, and I'm turning 27 this month. I was an athlete for 10 years, and I had straight A's all through high school. I graduated with honors, multiple scholarships, and I was years in the school for my PsyD. I loved going on adventures, traveling, reading, painting, drawing, I even loved having a job. I even had a healthy immune system, and that was all until I got COVID." - "I've been diagnosed with epilepsy, and the back to back seizures have caused brain damage; it has caused dementia type symptoms, spelling problems, mood changes, POTS, which haused caused me to be hospitalized multiple times with concussions and injuries. I'm on IV infusions and medications for that." - "I have to use a wheelchair, I can no longer legally drive; diabetes, an autoimmune disease, chronic and debilitating fatigue, vision deterioration, had to have my thyroid removed, lost half my hair. I still have a hard time breathing and have low oxygen at points-- chronic pain, muscle aches, tooth decay, increased mental health issues and ideations. I had to quit my job, withdraw from school, and I never see anyone but my family and doctors I can longer draw, travel, and I really struggle with reading, which is my favorite thing." - "My loved ones are terrified to leave me home alone, and I'm scared to even sleep at night because I'm afraid that I won't wake up. I spend my days alone in bed because life has to go on without me. This is the reality of it [long covid]. And 1 in 5 infections cause long COVID. I promise you, you are not invincible."

[themadcapmathematician]

People don't understand how pervasive the idea that a certain amount of pain and suffering is "normal" is. One way this is normalized is through the medical industry, because if you're a doctor who has "muscled through" burnout, being suicidal, constant sleep and food deprivation, physical pain, peers dropping out or killing themselves, and has taken drugs to get through all of that abuse on your body and mind, and you then go on to conduct studies and publish papers on those exact issues, you get to set the standard for what is and isnt "normal" for someone to endure. And the entire industry incentivises systemic bigotry about what it is "normal" for that to look like, and it incentivises dismissing the abuse of you and your patients for profit.

So our entire understanding of what is and isn't an "average" amount of suffering and abuse is set by people who have spent their entire careers destroying their bodies and brains and whose higher ups have very specific ideas on how they want that to be translated into study results and regulation. The conflict of interest and bias inherent in medicine and how we understand pain and suffering can not be overstated. It's how we get things like poorly conducted studies on long COVID and chronic fatigue, or informative diagnostic articles on "average" pain and distress for the layman.