#without the chronic pain + fatigue i can actually exercise

[ashes-onthewind]

reblog with your one disorder in the tags

i feel like every human should max out at one disability or chronic illness. like when i hit adolescence and my brain chemistry went “bipolar time now?” the response should have been an error message like sorry! this slot can only contain one (1) item and has been filled with childhood asthma. i would even allow the possibility that you can overwrite previous disorders like “you have equipped chronic migraines and so no will no longer display symptoms of bipolar disorder.” i just think it should work that way.

[9ofspades]

It’s disability pride month, and if you are disabled in the U.S. from Long Covid I want you to know that you’re not alone, and you’re valid in whatever you feel. Whether that’s sorrow at your new problems or rage at society for failing you, you are valid, and it is truly messed up that society is continuing to fail you.

[7ndipity]

Their S/o has ME

Ot7 x Reader

Summary: How they would react/handle their S/o having ME(aka chronic fatigue syndrome)

Warnings: not proofread

A/N: Thanks to @a-gayish-unicorn for requesting this! This is based solely on my own knowledge, experience, and research, so I’m sorry if it doesn’t fit with everyone's experiences.

Masterlist

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Jin: As I’ve said before, he’s really great at taking your mind off your frustrations during bad flare-ups or crashes, claiming that it just gives y’all an excuse to have a movie or gaming date at home, which are honestly his favorite. He always makes sure you know he’s not dismissing your condition in the slightest tho, and that he doesn’t mind helping out extra during relapses when it’s harder for you to do things on your own.

Yoongi: He would try to find a balance with helping you out with things where he can, while not making it seem like he’s trying to coddle or baby you. He just hates seeing you struggle and wants to do what he can to make you feel better. Doesn’t mind having to repeat things sometimes or sending you reminders when you’re having trouble with memory and concentration. A+ nap buddy, would highly recommend.

Hobi: He’s such a sweetheart, he can’t help but worry about you sometimes, wanting to make sure you’re okay. Tries to make sure you pace yourself and take plenty of breaks so that you don’t overextend or exhaust yourself when you’re doing things on your better days, as he knows is your instinct sometimes, in order to try and compensate for your worse days. Anything he can do to help you, just say the word and he is on it.

Namjoon: Super patient and content to do things at your pace, understanding when you need time to rest or recover from little things. I feel like you make him a lot more aware of the effort that actually goes into even the simplest things, appreciating and celebrating your good days when you can do things more easily. Will unjokingly offer to carry you literally everywhere to help save your energy.

Jimin: He’s always super gentle with you on bad days, trying to help you with your daily tasks without making a big deal about it, bc cooking dinner together is more fun anyway, even if it’s just instant ramen. I could see him suggesting y’all try something like yoga or massage therapy together, since it’s supposed to help with some pain and stiffness without exhausting you like regular exercises. Your comfort is always his top priority.

Taehyung: He’s a great shoulder to cry on when you’re feeling really burned-out or depressed, listening to your feelings without judgment or trying to fix the situation for you. Loves leaving cute little notes for you to help you remember things. Makes days when you’re crashing or hurting a lot more enjoyable, setting up camp on your couch or bed and binging movies or dramas with you.

Jungkook: He worries about you a lot, but tries not to let on or baby you. Tries to help in subtle ways, like letting you lean on him when you start feeling tired, offering massages when you’re sore, making you tea, etc. He even invested in blackout curtains to help on days when your headaches or light sensitivity is really bad. He just wants to show you that you can rely on him for whatever you need.

Taglist: @sopebubbles-replies @btsw1fe @this-must-be-my-tardis @whitefoxgirl @bethanysnow @coffeedepressionsoup @main-bangtansmauyeondan @feminympho @a-gayish-unicorn @dfqcsqueen @mother2monsters @comingupwithacoolnameishard @captainorangegoose @k4ngelz

[starry-bi-sky]

Clone^2 danny headcanons and/or facts that i wanted to expand on but didn't have the motivation or inspiration to write a ficlet about. Ultimately most of these are ideas that already exist in canon clone^2 but are only now being expanded on/explored/stated specifically.

Because I'm procrasinating cfau and passively thinking about clone danny and damian again.

1 - As he's liminal, Danny generates his own ectoplasm. He generates it at a slower rate than the casual ghost but faster than the average liminal. It's what gives him an ecto-signature and results in him triggering his parents' weapons and ecto-sensors.

The ectoplasm he generates actually has a use, and he tends to burn through his supply while he's fighting because of all the physical energy he spends + the use of his scary eyes requires (albeit really minor amounts of) ectoplasm to use. It also has health benefits, as using his ectoplasm keeps his heartbeat steady and lessens the risk of his arrhythmia flaring up due to all of his physical activity and adrenaline.

It does happen occasionally that he uses up more ectoplasm than he can replace, and this has the expected negative effects on his health as all that adrenaline and stress catches up to his heart without a buffer to mitigate it. He carries a canteen full of diluted ectoplasm with him in order to give his system the boost it needs in order to stabilize itself, which he can usually tell when he needs due to excessive fatigue/chest pains/dizziness/other arrhythmia symptoms he gets that means he's low on ectoplasm.

2 - Danny's arrhythmia is a form of bradycardia (which is a slower heartbeat) -- what type? Unspecified / Unknown thanks to it being ectoplasmic in nature.

3 - In that same breath, Danny also has to burn that ectoplasm off in some form or another because if he doesn't it builds up and causes him the same issues as if he was too low. It also causes him to become more emotionally volatile, restless, irritable, overstimulated, etc, which the stress of that then makes his heart condition worsen. If too much ectoplasm builds up, it'll cause a physical electrical shock/shortage. This is rare however, and usually is the equivalent of giving someone a painful static shock. At best it makes the lights flicker or technology fritz out for a few seconds.

While it doesn't have much effect on the physical world, it does expend a good chunk of ectoplasm. Think like dumping out a heavy bucket of water that you've been carrying for a while, or getting into a hot shower after being outside in the cold for hours. It's emotionally draining but very relieving.

4 - Danny can replenish ectoplasm or generate ectoplasm faster by resting, eating, consuming other ectoplasm (fastest), fulfilling his interests / doing things that makes him happy, or by being exposed to high amounts of ectoplasm in the area. He can also rapidly generate it by being in a volatile emotional state, but that drains ectoplasm almost as quickly, and runs the risk of causing flare ups in his arrhythmia.

5 - this is actually canon to the au but I figured it wouldn't hurt to expand more on it / clarify / confirm, but Danny post-Damian has chronic pain in his hands from the nerve damage he sustained. He has daily physical therapy exercises he's supposed to do that he does in the mornings/evenings and whenever his hands hurt/feel stiff. He wears compression gloves in his day-to-day life and gets Sam and Tucker's help to brainstorm ideas about how to make compression gloves for Phantom that can include his knuckledusters. His grip and hand strength is weakened.

He has bad hand days where his hands hurt more than usual. This can happen at random, but is more common after he's overused/strained his hands either the day before or earlier in the day. His fingers stiffen up for similar reasons, and he gets tremors. It's happened before where (for example) he's braiding his hair and unbraiding it, only to need someone else to finish the braid because his fingers stiffened up and don't want to work like he wants them to.

Massages, heat, pressure, etc. helps soothe the pain, and since Danny's a fidgety person his friends and family can usually tell when he has a flare up because any hand movements he was doing prior ceased/slowed suddenly, or he starts massaging his hands / stretching out his fingers.

Damian very stubbornly insists on massaging his hands for him when this happens, he has a lot of intense guilt for being the reason for Danny's chronic pain so he wants to alleviate it in anyway he can.

6 - Danny has what I like to call "Bruce-isms", a word I came up with just now that means he has Bruce Wayne mannerisms that come from the fact that he's still Bruce's clone. A Nature vs. Nurture thing. His Bruce-isms include the Bruce Grunts Of Ambiguous Tonal Meaning ("hm", "hrm", "hn"), his workaholism, his paranoia (on a milder scale), etc. They're small, relatively non-defining things that are quirks but don't make up his personality.

He's got what Sam and Tucker like to call "Bruce Wayne Moments" which are essentially Bruce-isms but only ones that Danny and his friends are aware of considering they only know Bruce as Brucie Wayne and not Batman. "Bruce Wayne Moments" include Danny being clumsy, doing something air-headed, being oblivious, etc. It's not a common joke among the three of them since Tucker and Sam know that Danny's still pr sensitive to the whole clone thing. So they only bring it up when he's done something stupid but hilarious.

7 - while clone^2 focuses more on Danny and Damian's relationship and Danny helping Damian develop his identity beyond just "Damian Wayne's Clone", Danny still suffers from his own identity crises. He sometimes gets jealous of Ellie and Damian for being "lucky" that they always knew they were clones, rather than finding out later in life.

He's aware that this is not fair to think and that Damian and Ellie both have their own struggles as clones, but he can't help it sometimes.

He tries not to think about it too much, but when things get too quiet or when he's not busy, Danny can't help but wonder how much of himself is things he's learned on his own and come from him, and how much of it comes from being Bruce Wayne's clone. He has to stop and count how many things are unique about him specifically when he starts to emotionally spiral. It's not rational, but it's not supposed to be.

As a result Danny kinda, hm, clings to his identity as the Phantom, just a little bit? He thinks it's one of the few things that he has autonomous control over as "Danny Fenton", rather than it being a result of him being Bruce Wayne's clone. Because Bruce Wayne isn't a vigilante! Right? Right?

Consequently this becomes one of the reasons that Damian keeps mum about Bruce Wayne's identity. The original reasons were because Danny asked not to know much about the LoA beyond what Damian already told him, and Batman was technically "apart" of the LoA, and secondly because he just didn't want Danny to get involved with Batman and co and Danny knowing about Bruce Wayne's identity could potentially cause that.

But as time goes on Damian kinda notices like, just how being a clone is affecting Danny even if he hides it from Damian pretty well. He can't really comprehend what it was like for Danny to grow up thinking he was normal like everyone else only to find out he was a clone, but he does see the hurt it's causing his brother. And he does notice that Danny was holding onto being Phantom quite a bit, and figured that if he found out Bruce Wayne was also a vigilante, it would hurt him beyond belief.

8 - So Danny's creation has been kept relatively,,, mmm,,, vague? considering I've been struggling for a time how I could plausibly have his creation happen without Bruce finding out about it immediately. And my conclusion is that around the time Danny was created, Bruce met up with the Fenton parents again for some reason or another -- checking out their tech under the guise of wanting to catch up with them.

And I can imagine that, due to being close friends in college, the Fentons literally just outright told him, "Hey we wanna 'nother kid but don't want to go through the risk of pregnancy again, so we're gonna make a clone of one of us instead"

and in true Bruce fashion, he mentally went "wow i should learn Everything And Anything About This Thing Specifically. Just In Case." and outwardly went "woah cool! ahaha how does it work"

and since the Fentons consider Bruce a close friend and are also incapable of Not Talking About Science, turned and went "OH WE CAN SHOW YOU" and showed Bruce their entire cloning process up to and including how they (safely) extracted the DNA they were gonna use. of which they already had. they were gonna just extract Jack's DNA a second time as an example, but it was Bruce who said "hey you should try me instead" in order to gauge how exactly safe this was and if there were any symptoms he would need to recognize in cloning.

so with his consent they did, and then showed him how they were going to use the DNA to make a clone without actually going through the process. Without prompting from Bruce, the Fentons went "we're gonna throw your DNA away though since we don't want this lying around and because we have no use for it" and visibly showed him that they were disposing it.

Bruce came to the conclusion that the Fentons weren't planning anything nefarious, they just really wanted another kid, and (reluctantly) left afterwards. The mixup comes when Maddie, surprisingly, misplaces the cartridge with Jack's DNA in it and while they could have always gotten another sample, it was better and safer to just try and find the original before that.

Jack finds Bruce's in their disposable. In his excitement, he forgets that it was Bruce's DNA, and manages to get it out safely. Maddie wasn't looking when he found it, and in her excitement also forgot to ask where Jack found it. They used that cartridge instead.

When they found out they used the wrong DNA, Danny was already about year old and while Jack and Maddie are morally dubious, they're only morally dubious towards ghosts. Danny was their beloved human baby, they would never do anything to him.

That being said, they were still horrified when they found out, and really, they genuinely did consider reaching out to Bruce to tell him. They thought it was something he deserved to know since it was his DNA that got used instead, and they felt awfully guilty after he trusted them enough to let them draw DNA from him. The only reason they hadn't is because, at the time, Bruce had been really busy with something in his public life and they didn't want to bother him during such a stressful time.

So they were going to wait, and in Fenton-like fashion, forgot to tell him. When the subject came up again sometime later, they assumed they already told Bruce and went about their day.

[rederiswrites]

I want to talk about my health journey over this last year, improving my function and getting better with fibromyalgia and chronic fatigue. But talking about chronic illness is so incredibly difficult. Look at the backlash people get for saying that exercise and sunshine and regular sleep really DO help depression. What I have to say is in many ways the same thing! It's an incredibly delicate issue, and very often, talking about solutions you can implement yourself sounds like blaming people for their own suffering. On the other hand, if all you hear is the conventional medical line that there's nothing but some medicine that sort of helps, that's where you're stuck. I was stuck.

I didn't want to hear that learning to fucking relax was going to be a huge component of my journey. That sounded like exactly the same shit the people who said "have you tried yoga" and the doctors who told me it was all in my head were saying! It's not, really. Not at all. It's missing far too many critical components. But uh....learning to relax is in fact incredibly important.

For example, yes, the pain is in my head. Pain is ALWAYS in our heads!! That is where the brain decides to interpret data received from the nerves as pain! It is ALWAYS heavily influenced by factors well beyond the objective experience. Science has thoroughly demonstrated that we can feel pain without an injury--indeed, that we can feel pain when the sensory input wasn't even on our body! And in the inverse, we can have injuries and not experience pain. Pain is not nearly as reliable a signal of injury as we believe it to be.

And yes! Yoga might help! It helps a lot of people! But if you go and do yoga with, say, a teacher who is not trauma-informed, or without at least some understanding of what your nervous system is up to, or the strains and trouble points in your body, you'll get little benefit and might experience harm.

The nervous system is our body's OS, in a very real sense, and for me as for many people, addressing that turns out to be really important to healing. But the nervous system isn't really designed to be user serviceable! So if it's being overreactive, constantly on high alert, keeping you in a stress response that physically blocks healing, feeling pain where there's really only a light and innocuous pressure, or maybe just a runaway inflammatory response that, like a highway traffic jam, is literally just creating itself-- well, fixing that is hardly a matter of just "oh silly goose you should stop that! It's all in my head!" But there are ways. Mindfulness techniques. Visualization. Meditation. I almost mistyped medication but it's actually true--a lot of the time fibro and ME/CFS patients get treated with antidepressants! It does help, for a while, but it doesn't change the underlying problem much.

For me, while I've tried and gotten benefit from some of those--actually, come to think, ALL of those things--pure information is my medicine of choice. Just exposing myself over and over to the message that you can get better, that people have, that there's nothing detectable mechanically wrong with me, to the science of physiology and the nervous system and pain. Books, TED talks, youtube videos, research papers, articles...

And most importantly, I had to commit. I had to reach a point where I said, I will do whatever it takes. No comfort, no habit, is more important than getting better, and I believe I can get better. No doctor ever told me that--I had to find survivors who had recovered online, largely by accident. Once I believed I could get better, working to achieve that goal became vastly easier. So I radically changed my diet. I restructured my days massively. I spent hundreds of hours consuming information that reinforced my hope and commitment and my understanding of the problems. I worked incredibly hard to get my sleep under control, and it's an ongoing process but there has been progress.

Today, I got out of bed before the second alarm that tells me to get off my phone and get up. Because getting up wasn't so crushingly hard. I didn't have a perfect night's sleep, but it was enough. Yesterday, and the day before, I worked steadily through the day, I accomplished my goals, and I didn't end the day crushingly drained OR bubbling with adrenaline from pushing myself beyond my normal limits. I don't need to recover, today. Because I didn't do more than I could sustainably do, and yet I made progress. I did laundry. Had great conversations. Planted three dozen tulips. Pulled weeds. Attended a webinar and learned how my state legislature works. Took care of the chickens. Ate a really healthy lunch that I enjoyed, and made the family a really healthy, delicious dinner. Caught up on the news with the family and then read a thought-provoking book. Made beads.

I still have a long way to climb on this spiral staircase. Probably the cold weather and midwinter will really challenge my ability to regulate myself and stay functional. I still have to incorporate regular exercise as a critical pillar of ongoing good health. I'm still struggling to find resources on meditation and mindfulness practice that I resonate with. (Three books in on that subject, one of which was interesting but annoying, two of which I actually quit in exasperation.) But I do really feel like I'm making progress that's not just luck or the usual fluctuation of symptoms. I am, in quiet ways, doing Pretty Okay. And that's a lot, when you've been bedbound.

[derinthescarletpescatarian]

hey! so i hope this isn’t too creepy/nosey, but im a medical student and i was reading your possible fibromyalgia post and have a couple ideas lol. full important disclaimer that im only partly into my studies and im currently in the hypochondriac phase and also your summary was amazing but a real doc would ask way more questions, so please consult with an actual doc and take everything i say with a grain of salt! but like your symptoms aren’t nothing so i would def encourage finding a doc that you trust to do a proper exam and run some tests. also im operating under the assumption that you’re under 50 lol, bc if you’re over 50ish that’s a whole diff list of possible diagnoses.

so the thirst thing you’re talking about is often called polydipsia and is commonly associated with diabetes insipidus. that’s not the normal diabetes you think about, but happens when your body can’t regulate fluids in your body properly. id think of this if you’re also peeing a lot lol. your doc would have to do some kidney tests for that, which wouldn’t be part of the blood panel you mentioned. i’m a little skeptical that it’s hypokalemia bc that would’ve showed up on your blood test results. it could be transient electrolyte imbalances when you exercise so have one of those electrolyte packets when you exercise lol, bc it never hurts to try the easy solutions first, but chronic low potassium should’ve shown up? tho eating sweet potatoes has never hurt.

other things it could be is a lower motor neuron problem bc you mentioned twitches and muscle weakness which is typical for those. i def can’t say more without tests, but look into/get your doc to look into myasthenia gravis or LEMS and see if either of those fit. i think it’s possible bc these often also start with face/upper body symptoms, but would need way more questions/tests to know. it’s unlikely but could also be a glycogen storage disease called McArdle disease bc you describe a second wind thing when you exercise along with exercise intolerance. that’s super rare tho so it’s unlikely unless someone in your family has it/has similar symptoms.

also look into autoimmune stuff like rheumatoid arthritis, lupus, and sjögrens disease. i have way less useful info on that bc we haven’t gotten to it in class yet lol, but sjögrens looks promising bc you often get dry mouth with it, and it often goes along with rheumatoid arthritis which could explain the joint stuff possibly.

it’s also totally possible this is fibromyalgia, but i would be cautious diagnosing it bc it often comes with fatigue and cognitive stuff which you didn’t mention. it’s also more of a pain thing, and doesn’t include your twitches/dry mouth. it’s def possible, and it was def something i thought of when i saw your symptoms, but personally i would want to rule out other stuff first bc fibromyalgia is pretty vague and often a diagnosis of exclusion when other things don’t fit.

sorry for overwhelming you!! i just saw your post and was like hmmm those symptoms sound like Something. again take my advice with a big grain of salt, but i do really think it’s worth asking your doc about it and getting tests done, bc even if there aren’t cures there are def treatments to help with a bunch of this stuff. it doesn’t sound urgent, but at least from your post your symptoms don’t sound like run of the mill aches and pains. hope you figure stuff out!!

The problem with 'muscles don't work right ouchy and I am also tired' is that it's a symptom for Absolutely Everything That Can Be Wrong With The Body. Is it cancer? Is it a terrible diet and sleep schedule? Who knows!

The doctor ran a diabetes test with the blood panel and it came up negative, but I don't know if that checks for weird kinds of diabetes. (Diabetes does not run in my family until we get very old.) That test was memorable because I have stupid fragile veins that freak out and collapse at the mere sight of a needle so I had to get stabbed nine times, they didn't manage to get the middle reading at all, and in the end they resorted to just stabbing my thumb with one of those diabetes home blood test thingies and manually squeezing my blood out into a tube drop by drop.

I looked up polydipsia and I don't think I have that. I think I just prefer my mouth to be wetter than my salival glands want it to be. 🤷‍♀️I think most of my problems are probably not related to any rare chronic disease, but just run-of-the-mill autism making it hard to look after myself or properly notice and process my physical condition and adapt accordingly. I don't eat enough fresh foods because it's hard to plan with the very short timeframe to prepare and eat them in. I'm uncoordinated and damage my body a lot through overwork or using muscles incorrectly because autism makes it hard to keep track of those things. My mouth feels dry and my skin feels itchy and my muscles feel sore because that's what being autistic feels like. My sleep schedule is garbage because my executive function is garbage and even once I do manage to get myself into the bed I can't just "go to sleep", I pass out when I'm ready to pass out.

I'm not saying it's impossible for anything else to be going on, but I think the known factor is the simplest explanation here. It's 2:30pm and I've been putting off breakfast for five hours. Every time I go into the kitchen I get distracted by housework instead. I am very hungry. This is not behaviour that is conducive to a well-functioning body.

[asofspades]

Listen, as someone who used to be this academic weapon, who handled living in a very toxic borderline abusive family situation for more than a decade, who balanced getting perfect grades while being the parentified oldest "daughter" and pushing through social anxiety, depression, swersidal thoughts and an ED all while getting bullied at school and being autistic without a formal diagnosis and far from having any help only got more expectations because of supposedly being gifted and also ignoring chronic pain and fatigue and pushing through it until we'll into college and now having burnt out because I pushed myself way too far I want to say that I feel kind of uncomfortable about people thinking that Nico's character has somehow been "nerfed" by Rick because he no longer does what he did during Heroes of Olympus, like, listen, that kid completely pushed himself way past the edge, he almost vanished into shadows, hes canonically dealing with so many mental issues he had to resort to Dionysus to not go insane , he literally has an unspecified eating disorder derived from all the crap he's been through. Like, of course he's not going to be doing what he was back then, he was killing himself literally, he was running on fumes, spite, the verge of mental and physical collapse anda shit ton of adrenaline. That kid definitely has long time and chronic issues derived, he's not going to be the same, and he's still extremely OP if we're being honest, he has a ton of abilities just naturally running in the background, he can now turn people onto skeletons directly and command them. One would think that he's now fully useless in combat the way people talk about him supposedly being "nerfed" in ToA but honestly I'd just be glad if that kid never had to use any of his abilities ever again and could just let himself actually rest.

It feels a bit like an attack to all of us who've been through stuff and wouldn't be able to go back to the level of productivity and the ability to handle stuff that we had in our worst moments where we were running on spite and fumes and hopes of making it out of we struggled enough and are now experiencing burn out and skill regression. Like, I feel like that kind of people are telling me I'm now useless even after all I've been through because I can no longer do what I did at my worse moments in life.

Like, I could legit run on just caffeine with no sleep or minimal sleep and no food for up to 3 days and still get good grades and do all teh household chores and homework and exercise to the verge of collapse, however I now am exhausted no matter how much I sleeps concentrating is the hardest thing ever, I do stuff half assed because I really do not have enough energy and I gave up on putting everything on my shoulders because I was genuinely collapsing in on myself. Like, this shit happens.

And maybe that's just me because if my personal situation but it really does rub me the wrong way, I'm sure Nico could pull the same bullshit again and push himself past his limits to the brink of death, the thing is that boy is tired and trying to heal and move forward and doing that would just be going backwards in his recovery. He has plenty of time ahead of himself to heal and grow stronger and capable of doing stuff without getting as exhausted but like it's been less than a year between the end of Blood of Olympus and TSATS obviously he's still recovering.

People say they wanted a story of him recovering and all that, but I feel like what they really want is just Nico magically getting rid of any real effect all the shit he went through had on him, which just isn't realistic.

[self-loving-vampire]

Pretty wild that, according to that chart I recall from a while ago, people with chronic fatigue syndrome have worse quality of life than even people with depression or terminal cancer and a lot of people don't realize how life-destroying it can be.

My own case seems pretty mild compared to some others I have read about. I can still shower, exercise (though not even close to a "normal" amount), and go out on appointments a few times a month. There's others who can't even eat on their own anymore.

And even then I'm often too exhausted to even read or play video games from my bed and can do nothing but lose consciousness several times in a row while having full-body pain equivalent to what you get if you have a bad flu or over-exercised badly.

A lot of the time it's like passively watching your own life happen from outside of it, without the ability to actually participate in it the way you used to while many (if not all) of the abilities you previously defined yourself by decay into nothing with no cure in sight and your best years already lost.

And also your lifespan is cut by like 25 years.

It really says a lot about how great my husband is that I actually seem to enjoy my life more than most people appear to despite all of this, though I do wish I could get a body that was less horrifically defective.

[funnuraba]

ME/CFS symptoms part 2: The Fatigue

Hey, have you guys noticed how everyone is tired recently? Like, everybody you know is exhausted, and so are you, and so is everyone on the internet and in real life, and nobody's getting better, and sleep and rest don't help?

In addition, are you having new symptoms like tingling hands and feet? Dizziness or lightheadedness? Restless legs? Digestive problems? Slow thinking? Word confusion? Tinnitus or other hearing loss? Vision loss? Stomach problems? Sinus issues? Sleep disturbance or change? Soreness? New, worsening or changing migraines? Heart palpitations? New sensitivity to the weather? Joint pain? New chronic pain spots? Dark patches on your torso? Hair loss? New incontinence at an unusual age without having had children? Do you feel like you have the flu after heavy exertion?

Yeah I was having a lot of that myself. Turns out it was Long Covid, the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome type, which makes up 50% of all Long Covid cases. I can't sugarcoat this: if you have this, you are fucked to some degree. You have to reduce the amount of energy you use or you'll degenerate further into actual living hell. That means no stimulants, no pushing through it, no exercise at all, period, no I'm not joking, exercise makes you worse with this condition.

And not just physical exertion, but mental exertion. The energy it takes to put things into words, to look at screens or movement on screens, to digest food. All of that is way more than you think. You need to figure out your new limits, because aggressive rest is the only way you stand a chance of staying in the Mild stage. This may mean ending your social life, ending travel, working from home, quitting your job. If you don't do it, you'll wish you had.

Aggressive rest means staying in bed a lot. Doing nothing. At least an hour a day of literally nothing: you lie there with earplugs in and an eye mask on. It's gonna be awful. But I'm not exaggerating: Moderate ME/CFS is hell on earth, and there are two stages after that: Severe and Very Severe. Your body physically can't restore energy in a normal way anymore. If it runs out, you'll get Post Exertional Malaise, and if you get too much of that you "crash".

A crash keeps you from doing anything. You won't be able to process sound or light, you probably won't be able to get out of bed. You may not be able to sit up. You might struggle to breathe. You may get out of the crash in a day, in a week, in months--or never. Every single crash has the potential to become a permanent loss of function. People have lost the ability to digest food and the muscular strength it takes to breathe. There are people who do nothing but lie in the dark all day, unable to tolerate light or sound, being fed through a tube port by a caretaker who has to hurry out of the room because the physical presence of another human being is too painful. And those are the lucky ones who have non-abusive caretakers; almost no doctors or professional carers believe in this disease or are equipped to treat someone who has it. You can be legally tortured in the hospital if you go in for a procedure and the doctors think you're lying about what hurts you.

If it sounds like I'm trying to scare you? Yes. I am. I spent six months toward the lower end of Moderate ME. Hell is real. You will pray for death. You will not be physically able to kill yourself. This is why all those annoying disabled people keep screeching about wearing respirators to prevent Covid spread, because your odds of getting this go up with every infection, vaxxed or not, and many people already have it. They don't know yet. And they're pushing their way past their late chance to mitigate their descent into, I am not exaggerating, hell itself. You will want to fucking die if you get to a certain stage of this condition. ME/CFS patients have a high suicide rate and report a quality of life lower than end-stage cancer and AIDS patients.

So, again, are you tired all the time lately? Do you know someone who is? Look up the symptoms of ME/CFS and be very, very careful. And wear a fucking respirator in public spaces. All the time. No taking it off for selfies or indoor eating. You people are killing yourselves and everyone else for an illusion of normality that is never ever coming back.

[gaybd1]

Hey, I totally understand you might not want to answer this so please don’t feel pressured to! But I was wondering how you found out you have fibromyalgia? Is it something you’ve known since you were a child, or did you recognise the symptoms later in life and go to a doctor? I’m asking because I think I might have some sort of condition, if not fibro then maybe some kind of arthritis. I get a lot of the symptoms, but I don’t know if it’s just a normal amount. I do get joint pain, and even though it gets worse sometimes, most of the time it’s not unbearable. And also other symptoms like fatigue and brain fog etc, but they could be linked to a lot of things in my life. Obviously I know you can’t diagnose me or anything over an ask, but do you have any advice on how to tell what level of pain is more than expected for someone without a condition? Like I said at the start, please don’t feel like you need to answer this, feel free to ignore/delete it.

Honestly other people who have it talking about it clued me in a lot. I really don’t know how long I’ve had it but it got really bad and unbearable for me after a pretty bad head injury I had last fall. That’s a big way it can get started theoretically (nobody really knows anything about this for sure) and hoooo boy did it for me. So I’ve really only been actively aware of this for I’d say 4ish months? When I think back though I’ve had most of these symptoms for years, like since college

So a lot of googling around and talking to the right people and doctors (though I still have to get my ass up to a specialist for a ✨formal✨ diagnosis despite being p much confirmed already but I’m like literally why I have doctor anxiety and half of doctors think it’s fake and there’s nothing to be done about it anyway rip, the medical system in this country isn’t uh the best for that kind of shit) bada bing bada boom there we go

Some tips maybe I guess

If you are always/often in pain that’s not normal. It seems obvious but I had to actually have someone tell me that after putting up with it for so long. Also if you have fibro/chronic pain you’re likely to have a higher pain tolerance than others, for clear reasons

If a doctor tells you you don’t have it then maybe you don’t but also so many of them like don’t believe in fibro so I’d always get a second opinion

Track/pay attention to symptoms and when/how they get better or worse. A lot of times fibro pain gets better with exercise so you can differentiate it from like. Injuries or being out of shape. Also for me I’m always gonna have more pain after eating a lot of sugar.

Also fibro pain often affects muscles vs joints and isn’t necessarily limited to like one body part. For me I have several places it likes to be and it kind of just moves around. Also there are some areas more commonly affected than others

A lot of info can be found by googling! Symptoms and treatment!

A lot of symptoms for me are just stuff I’ve learned to live with but I often have “normal” days just from paying attention to diet, exercise (cycling), and taking glucosamine daily. I also have some mobility aids for days I need them but the more I exercise the less often that is

Obviously doctors can suck, but it’s definitely useful to get an opinion if you have the option

I hope any of this random rambling is helpful!!

[starcrossed-sky]

(previous anon) thank you for the detailed answer. my knees have no cushion either! and yeah, my body does not move the way i want it to in a few ways. standing still for more than a minute or so quickly gets very painful, and the only way to mitigate it temporarily is to walk slowly or shift my weight from one foot to the other if sitting isn't an option. i have to sit when i bathe/do dishes/laundry. i've mentioned this to doctors in the past, but they just tell me to exercise more, which unfortunately is not ideal because exertion makes my base level of fatigue worse to the point where i can't keep up with my day job. i'll put a pin on seeing a physical therapist some time, though; i have been planning to look into my mobility issues for a while.

about dieting- i've always been fat, since i was a child, and i felt completely neutral about my own body. when i was a small child, it was seen as cute and a sign that my parents fed me well, but by the time i was in high school, PE class involved everyone getting their BMI measured and i was classified as obese (32 or so). ever since then, my mother has been obsessed with my weight and mentioning how worried she is for my health and how i should definitely be on a diet because i was "ballooning" (said with terror and pleading).

but i was kinda never sold on it? i have relatives who're huge into dieting and would post their gym and progress photos on facebook, but some months later i'd see them at reunions and they had already gained it all back. i even had a distant aunt whose heart gave out because she gained and lost so much weight many times throughout her life. when it came to weight loss, my stance has always been: what's the point of all that effort and expensive products/services if it's so easy to gain it back anyway? i just want my weight to be stable, not to keep going down. unfortunately, i live in southeast asia, where being fat is seen as "you're gonna have a heart attack any minute if you don't drop everything and lose weight right fucking now!!!"

if anything, the only thing that annoys me about my weight and general size/shape is that it's hard to shop for clothes and shoes in my size lol. specialized plus size stores are always more expensive, economies of scale, etc. i always gotta rely on hunting for foreign overruns or secondhand stuff since everyone's so small in my country :p

Oh god, I can't imagine trying to shop for clothes at our size (I think my BMI is also in the lower half of the 30s... not that I pay attention bc that's not what BMI was designed for) in an Asian country. It's hard enough in the US and over here, Asian sizes are notorious for "plan on buying at least one size up from your US size, probably two." I hav e enough of an interest in Asian fashion that I go looking occasionally and immediately have to laugh in pain at "size: XL waist: 112cm" type size charts. (my waist for reference is 50in/127cm)

You should definitely see a physical therapist if you can find a decent one (I have no advice for this, on account of there being an ocean between us, and also I myself have never actually used one). I only had immediate pain from standing during the worst of my Bad Hip period, but I have permanent back problems and can't stand for long periods without an assistive device (which in my case means... a heavy backpack as a counterweight. Lmao.)

Also, as far as fatigue goes, if your body is running estrogen as your primary hormone, get checked for anemia! I had horrific anemia before getting on T, and it was a definite factor in my chronic fatigue.

And, well, yeah, none of what you described with your relatives is surprising to me, as someone who has followed actual weight health science all my life as a survival need. Humans tend to vary by 5 or so pounds in either direction depending on various factors, but any weight loss of more than 10-15 lbs (please don't ask me to convert to kilos I don't have that one memorized) is like... it's medically concerning... unless the person is dieting! then it's fine!

Yeah, bullshit.

Good luck out there anon.

[junebugwriter]

Disabilities I

Since I have some time, I'll tell you all a bit about what the deal is with my disability, and why I am writing about disability in my dissertation.

Back in 2012, I got into a car accident. My girlfriend (now wife) was in the car with me, but I bore the brunt of the impact, and as a result, got some moderate spinal damage. That resulted in me going to physical therapy for a few months, but the lasting damage resulted in fibromyalgia.

Fibromyalgia isn't so much as a single disease, as it is a cluster of related symptoms that don't neatly fit into one classification or particular syndrome. It's more like, "you don't have x, y, or z, but you have all the same symptoms, so we're going to put you in the big bin that's labeled TO BE SORTED LATER." This is gross simplification, of course, but it's close enough for jazz.

Fibromyalgia is mostly related to a conjunction of hyperactive and inflamed nerves, chronic fatigue, and chronic pain. My body thinks I have an infection or an injury, but there is none there, so I get all the lovely side effects of my body fighting off or healing itself without the benefit of actually healing or fighting off an illness. It's not great! It's often comorbid with depression and anxiety, which I also have.

Really, the only reason I was able to get the fibro diagnosis was because my partner ALSO has fibro, and the only reason she knows she has it is because her sister has it! No one thing causes it, but it is often related to genetics or physical trauma. She saw all the signs of it in me, got me to see a rheumatologist, and sure enough, I have all the signs of fibro.

What I struggle most with is with the nerves and the exhaustion. I have chronic fatigue, and the rest I get from sleep isn't all that restorative. Whereas most people tend to wake up rested, I wake up more or less the same amount of tired a regular person feels before going to sleep.

I'm relatively lucky, to be honest. I'm able to manage my pain and such with medication. I'm even able to go to the gym a few times a week, energy permitting. But that takes a lot of effort, and I probably don't see all the benefits a regular person would get from exercise because of a cluster of reasons, related to my thyroid, fibro, and other things.

Oh, and just this past year, I've gotten serious about addressing my latent ADHD. I've had it all my life, but the difference now is that I'm trying to write a goddamn book, and that takes a lot more mental energy and organization than I usually have. This may be needed to addressed in another post, but the fact of the matter is, I'm taking a lot longer to write this thing than most people, partly because I'm working full time, and partly because my brain simply does not work like most neurotypical brains and requires a lot more effort to simply write one page whereas others might be able to knock out much more in a night than I would with the same amount of effort.

So there's my disabilities as they stand. I'll probably try to talk a bit more about them in future posts. It's an ongoing conversation, but having been diagnosed with disabilities like this has given me a much greater focus on the issues disabled folks face in society, and in my case, the church.

Writing about disability is both freeing but also complicated. Nobody experiences the same disability the same way, and can be affected by comorbidities that result in different experiences. I'll try to be as honest about my struggles with disability as possible, because it's good to get these stories out into the world and out of my brain. But also? We shouldn't be afraid to talk about our disabilities. In all statistical likelihood, you will be affected by a disability, either in your life or in a loved one's life. So it's good to be honest about struggles and joys related to disability, because if we can normalize it, we can understand each other better and work together to form a better community. One that treats each other as co-equal humans, worthy of love and respect.

[chroniccoolness]

3. if you have chronic pain, what’s your “normal” on the scale and what do you consider a good day on the scale?

4. if you have chronic fatigue, what’s your “normal” on the scale and what do you consider a good day on the scale?

5. what’s the worst part about being physically disabled?

6. what’s the best part about being physically disabled?

8. what’s your latest horror story from interacting with able bodied people?

10. what is something you want other people to know about your physical disability/disabilities?

14. what good has happened recently related to your physical disability?

16. have you always been physically disabled?

3:

i thought my normal was a 4, but. uh. actually thinking about it. my normal on the pain scale is a 5.5, so. that's fun. i'd call a 3 a good day

(4: "i am constantly aware of my pain but i can continue most activities". 5.5: slightly above 5, which is "i think about my pain most of the time and cannot do some activities i need to do each day because of pain." 3: "my pain bothers me but i can ignore it most of the time".)

4:

i have. no concrete average for my chronic fatigue. in the last week, it has been 2, 3, 4, 5, 6, and 7, NOT in order ksjdgsdkjgfk. if i haaad to say one, probably like. 4-5. fatigue scale frustrates me though because i have to do things like go out when i'm a 7, because i'm Forced to go to school, i just. fall asleep at my desk or in drama or whatever. anyway a good day is a 2 or 3.

(i wont explain all of these numbers in detail, but TLDR for the fatigue scale: 0 = no fatigue, 1-3 = mild, 4-6 = moderate, 7-9 = severe, 10 = so fatigued you literally cannot sit up)

5:

the worst part of being physically disabled is the amount of Pain and Fatigue i am in all the time. bonus second worst is the fear my ablebodied friends will leave me behind if i get sicker

6:

the best part is the community, and the realization of which of my friends i can rely on for support when things are hard.

8:

most recent? well, i've had to tell the same person she was spouting eugenics twice this week :')

first time: she was talking about how we should just kill some people with a virus to fix overpopulation. second time: she said (in a very morbid game) if she had to pick a grandmother to kill, she'd kill the sick one because her "quality of life" is lower. this girl is my friend, i care about her and she genuinely listens when i say these things are Bad and she needs to fix her outlooks, but she is also . very ablebodied . and sometimes that gets Tiring .

10:

ITS NOT GOING TO FUCKING GO AWAY IF I EXERCISE. IT GETS WORSE WHEN I EXERCISE. EXERCISE BRINGS THE PAIN AND FATIGUE UP INTO THE 6-8 RANGE. I HAVE FUCKINGINGING TRIED EXERCISE. THAT IS NOT HOW THIS WOOOOOORKS

ahem. other than that: i'm not too young. people can be born physically disabled. i wasn't, mine came along in the last few years, but like. i'm not too young lol. anyone can be disabled.

14:

i might have gotten a chance to get a doctor's appointment about it ! come february we will see

16:

nope. like i said, last few years (though i suspect i had some symptoms early on, bc i've always found physical exertion really frustrating and have never been able to run very long without it hurting)

[lightspren]

i’m so sick of asthma

i am sick of feeling like i’m breathing glass and i’m sick of feeling like a toddler is sitting on my chest and i am sick of the hacking chronic cough

and i am sick of my brain going “well it hasn’t landed you in the hospital so it can’t be that bad” and “you’re still managing to go to work and shit so it can’t be that bad” and “if it was Real it would respond to the meds so since it increasingly doesn’t you must be exaggerating and it can’t be that bad”

and yes I realize the flaws of logic there but i got my first chronic illness dx at fourteen. it was chronic fatigue syndrome. I have spent over half my life by now being told by doctors that proper diet and increased exercise would Fix Me, if I would just Try

(and yes I’ve seen the studies that exercise actually makes cfs worse. except, you see, i am not bedbound by my illness, so maybe cfs is a misdiagnosis, because it can’t be that bad)

and so i’m sitting here with my glass-lungs thinking “if i just vacuumed more maybe it would be better” and “maybe if i exercised more my lungs would be better functioning” and my brain scrambling to try to come up with more ways that this is My Fault. my fault. that i’m not trying hard enough to fix.

because god fucking forbid that I, at a few weeks shy of 29, finally accept that I’m not just chronically ill, but maybe disabled (see, I can’t even type it without making it hypothetical). and that I can’t Try Harder my way out of being sick, no matter what the lineup of doctors have said for the past 15 years. god forbid i accept that maybe it IS that bad. maybe I AM struggling more than others. maybe I’m NOT just weak, just unable to cope with the shit everyone else breezes on by.

or maybe I’ll look at this in the morning and be like “god what’s with the melodrama woman, you’re fine, everyone deals with fatigue, or pain, or allergies acting up in spring, suck it up”. that’s the most likely outcome, really. i am nothing if not consistent in my self doubt.

anyway. that’s all I got for now. gonna go try to stop crying so maybe I can sleep.

[thots-n-prayrs]

I am depressed and bored and trying something new.

I have never journaled. Ever. I just don’t have the drive, or the ability to do something consistently. My life has been a series of hyperfixations that burn out and are soon replaced by brand new hyperfixations, so consistency is just...not my thing.

But I guess now that I have the itch to write, I will.

The whole point of doing it on Tumblr is that I’m screaming into the abyss and I know it. I don’t need a response. I don’t even need for this to be acknowledged, much less actually read. I just want to write it, but I don’t want to keep a running document on Google and I don’t have my own computer right now to keep shit like this on.

I’ve been in a weird state since at least Sunday. Months ago, my wife printed out the “how s*icidal are you” scale my therapist gave me and put it on the fridge so I could move a magnet up and down as my depression ebbs and flows. This probably happened because of one or two incidents where I was s*icidal and didn’t even tell my wife until it passed, and I freaked out, broke down crying, and told her I what I had been feeling and planning.

Sunday-ish, my mental state jumped from where it hovers, around three (”I wish I was d*ead”) to five (”I want to k*ll myself.”) Five is not yet cause for concern. Six is where you should start to get worried. Seven is where you should be more worried. Eight is where you should probably call my therapist or the hospital, because nine or ten is extremely bad.

Well, it hasn’t gone back down. I’ve hovered right here, unusually high, for days. It’s really strange and kind of awkward being in the stage of ideation where you’re thinking about it but not planning. It’s impossible to honestly answer a “how are you.” And, it’s uncouth to tell your co-workers, “Yeah, so, I’m struggling a lot with x, y and z because I am actively fighting my own brain just to stay alive.”

“Stay alive” meaning I don’t want to move any higher up on the scale. Ideally, we move down.

So the problem is that I don’t really know how to move it down. Historically, I have one big cataclysmic breakdown, and then when it subsides, I’m somewhat better. I drift back down to a three. The problem with whatever this is is that it won’t seem to hit the crescendo and subside like it has before. I’m just...here. Like this. Trying so hard to hold myself together -- which isn’t going great since this particularly bad depressive episode is affecting everything. It’s affecting work quite badly. I’m making mistakes I would have never normally made. I’m forgetting everything, even if I write it down. It’s overall going pretty poorly.

(My therapist, my wife and myself made a crisis plan, by the way. My stupid brain found ways around it.)

And all I can really do is remind myself that my wife doesn’t deserve to be widowed. Papa doesn’t deserve to bury another family member way too young -- least of all his own child. Nobody deserves the ridiculously high expenses of a funeral and a burial or cremation.

The other thing I keep reminding myself is that this bad haircut is going to grow out. My hair grows fast. It will be worth watching it grow back to a length I like. It will be worth having cut and styled in a way I actually like it.

My health goals are worth pursuing. I gained weight again when I stopped working a physical job. It’s totally worth learning to exercise without accidentally injuring myself. It’s worth watching myself get slim again, and maybe trying to build muscle like I always wanted to. The only issue with all this is my body, because, well. Chronic pain and fatigue. But one of the ways people deal with fibromyalgia is exercise and changing to a healthier diet.

It’s all worth pursuing, and I can sort of see it in some moments, but then it vanishes and I get lost in the now. Well, right now I’m overweight. Now I’m tired and in pain. Now my hair is ugly (to me).

I’ll be fine in the end. It’s just hard right now. I’m not going to k*ll myself, don’t worry. If I were planning that, I wouldn’t be writing this -- I would be planning or executing...horrible, horrible joke, yikes.

[hawkeyedflame]

wow so i have never counted calories a day in my life because i do not care but i was listening to some doctor expressing her opinion that people who experience relief from autoimmune issues on a carnivore diet are probably just experiencing food monotony-induced calorie restriction (the tendency to eat less over time when you are given the same exact meal every day) because there is a wealth of literature documenting the benefits of fasting and ketogenic diets for autoimmune issues. weirdly enough she didn’t connect that perhaps the mechanism isn’t calorie restriction but the fact that eating very few or no carbohydrates (as with fasting, keto and carnivore diets) forces the body into ketosis, which has very well documented health benefits.

so out of spite i looked up my approximate daily caloric intake based on what i tend to eat in a given day and. my friends.

i eat almost three thousand calories a day. easily more on some days if i feel particularly hungry.

and i LOST WEIGHT. (i was already thin btw) i lost ten pounds in the first month, and then? i gained back a few pounds and all of it was muscle. no exercise whatsoever. passive weight loss, passive muscle gain. calories in calories out is literally not true lmao. anyways.

today is my three month anniversary of carnivore. my joint pain is gone. my dental problems are gone. my chronic fatigue is gone. my acne is gone. my depression is gone. my anxiety is gone. my brain fog is gone. my chronic headaches and constant neck pain are gone. my blood sugar crashes are gone. my adhd is far more manageable than it’s ever been, and gets smaller every day. i am not experiencing the slightest hint of seasonal depression. i fall asleep without difficulty and, more incredibly, i wake up without struggle. i have so much energy that i recently started exercising because i didn’t know what to do with myself.

eliminating carbohydrates from my diet saved my life. i wish i were being dramatic, but now that i know what healthy feels like i can properly recognize how sick and feeble i’ve been for the past ten years. i never want to feel the way i used to feel ever again. i’m alive. i’m actually alive.