#ME/CFS exercise strategies

[compassionmattersmost]

10: Embracing Your Own Pace: The Conclusion of Our Post-Viral ME/CFS Exercise Journey

Dear Friends, As we come to the conclusion of this series on exercising with post-viral ME/CFS, I want to offer you a heartfelt reflection on the journey we’ve been exploring together. It’s been a path of discovery, patience, and above all, compassion—compassion for yourself, your body, and your unique experience with ME/CFS. We’ve discussed everything from imagining workouts while lying in…

[myalgicencephalomyelitiscfstom]

From The #MEAction Network

Wondering about the terms PEM or pacing? Have you seen #StopRestPace and were curious as to what it referenced? Maybe you have been in our community a long time and want to save some easy ways to explain these concepts to others. Perhaps you have seen pacing misused and want to help clear that up. We hope this post helps!

#StopRestPace is a campaign created by #MEAction to help our community spread the word to those who were experiencing PEM after COVID-19 to rest and pace their activity.

What is PEM? Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM.

Sometimes exertion is misunderstood as exercise. Exercise is simply one form of exertion. Exertion is defined here as anything that stresses or strains the system. Exertion can be physical, orthostatic, sensory, cognitive, emotional, or environmental. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.

Pacing is a self-management strategy for activity. Patients who pace well are active when able and rest when tired. Proper pacing involves building up awareness of the levels of daily activity that do not trigger relapse of symptoms through PEM. While this sounds simple, it is incredibly difficult. Activity management in severe patients can be very challenging since even activities like eating or brushing teeth may lead to a crash. Pacing advice may not always be useful in this population.

#MEAction offers three pacing guides - adult, pediatric, and clinician - on our site. Our pediatric guide was developed in conjunction with Long Covid families. Our clinician's guide was developed with Patient-Led Research. https://www.meaction.net/resource/pacing-and-management-guide

[anumberofhobbies]

I wonder what the status of this from last year is now?

To see if WASF3 dysfunction might be involved in ME/CFS, the team compared muscle tissue samples taken from 14 people with ME/CFS to samples from 10 healthy volunteers. They found substantially higher levels of WASF3 in most of the people with ME/CFS. This dysfunctional increase in WASF3 seemed to be linked to impairment of a cellular signaling pathway called the ER stress pathway. When the team treated human muscle cells with a compound known to increase ER stress, they saw a corresponding harmful increase in WASF3. The researchers treated cells from the initial study participant with an experimental drug, called salubrinal, known to reduce ER stress. After this treatment, WASF3 levels decreased in the cells, more mitochondrial energy complexes formed, and energy production improved. “We hope to embark on clinical studies to investigate whether this type of strategy can also work in patients to improve energy levels,” Hwang says. Mitochondrial dysfunction has been found in some people with Long COVID and other conditions that include fatigue. More research is needed to understand whether targeting ER stress may also be a promising approach for these conditions.

[shesaysdisco]

I have some guided movement recommendations!

Julie Hunter’s movement_with_me on Instagram is a great resource for low-energy movement/exercise strategy. Julie was bedbound with ME/CFS following a COVID infection, and she used her experience as an athletic coach to figure out ways to reintroduce tiny doses of movement into her schedule, interspersed with purposeful rest, in such an effective way that she is now effectively cured and has returned to her pre-COVID baseline. She offers paid personalized movement coaching, wherein she creates a flexible multi-week schedule for clients to follow. Her Instagram account is a totally free treasure trove of advice, and if you scroll back a ways you’ll find videos demonstrating very simple starter exercises with a range of adaptations for different levels of ability.

Justin Agustin has an Instagram account and a YouTube channel full of “gentle functional exercises for everyday life,” including lots of workouts for beginners, seniors, and people living very sedentary lives. Many of his videos demonstrate techniques for beginners alongside a more advanced option, and he heavily stresses to only do what you are able to instead of pushing yourself further and potentially getting hurt. There are also paid versions of his work — a website and an app — with monthly challenges and a nutrition guide (and possibly more, but I haven’t used the paid version so idk).

And a guided flexibility recommendation!

David Thurin’s movementbydavid account on Instagram is all about gaining and maintaining flexibility through both active and passive stretching. He is incredibly flexible now, but he frequently mentions that it didn’t come naturally to him: He has consistently put time and effort into becoming more flexible, and you can do it too! Being flexible helps prevent injury, and, like fitness, is something you have to work to maintain and will lose if you don’t put in that work. Also like fitness, it’s something you can get better at, even starting from scratch.

All three of these people emphasize that you can follow their videos without special equipment, using things you probably already have (like a chair, a wall, a counter, and weights like a water bottle or can of food).

A lot of younger people have no idea what aging actually looks and feels like, and the reasons behind it. That ignorance is so dangerous. If you don’t want to “be old,” you aren’t talking about a number of years. I have patients in their late 80s who could still handily beat me in a race—one couple still runs marathons together, in their late 80s—and I lost someone who was in her early 60s to COPD last year. What you want is not youth, it is health.

If you want to still be able to enjoy doing things in your 60s and 70s and 80s and even 90s, what you want to do, right now, is quit smoking, get some activity on a regular basis (a couple of walks a week is WAY better for you than nothing; increasing from 1 hour a day of cardio to 1.5 will buy you very little), and eat some plants. That’s it. No magic to it. No secret weird tricks. Don’t poison yourself, move around so your body doesn’t forget how, and eat plants.

If you have trouble moving around now because of mobility limitations, bad news: you still need to move around, not because it’s immoral not to, but because that’s still the best advice we have. I highly recommend looking up the Sit and Be Fit series; it is freely available and has exercises that can be done in a chair, which are suitable for people with limited mobility or poor balance. POTS sufferers, I’m looking at you.

If you have trouble eating plants because of dietary issues (they cause gas, etc.) or just because they’re bitter (super taster with texture issues here!), bad news. You still want to find a way to get some plants into your body on a regular basis. I know. It sucks. The only way I can do it is restaurants—they can make salads taste like food. I can also tolerate some bagged salads. On bad weeks, the OCD with contamination focus gets so bad I just can’t. However, canned beans always seem “safe,” and they taste a bit like candy, so they’re a good fallback.

If you smoke and you have tried quitting a million times and you’re just not ready to, bad news. You still need to quit. Your body needs you to try and keep trying. Your brain needs it, too. Damaging small blood vessels racks up cumulative damage over time that your body can start trying to reverse as soon as you quit. I know it’s insanely, absurdly addictive. You still need to.

You cannot rules lawyer your way past your body’s basic needs. It needs food, sleep, activity, and the absence of poison. Those are both small things and big asks. You cannot sustain a routine based on punishment, so don’t punish your body. Find ways to include these things that are enjoyable and rewarding instead. Experiment. There is no reason not to experiment—you don’t have to know instantly what’s going to work for you and what won’t, you just need to be willing to try things and make changes when things aren’t working for you.

You will still age. Your body will stop making collagen and elastin. Tissues you can see and tissues you can’t see will both sag. Cushioning tissues under your skin will get thinner. You’ll bruise more easily. Skin will tear more easily. Accumulated sun damage will start to show more and more. Joints will begin to show arthritis. Tendons and ligaments will get weaker and get injured more easily, as will muscles. Bones will lose mass and get easier to break. You’ll get tired more easily.

But you know what makes the difference between being dead, or as good as, in your 60s vs your 90s? Activity, plants, and quitting smoking. And don’t do meth. Saw a 58-year-old guy this week who is going to have a heart attack if he doesn’t quit whatever stimulant he’s on. I pretended to believe it was just the cigarettes, and maybe it is, but meth and cocaine will kill you quicker. Stop poisoning yourself.

Baby steps; take it one step at a time; you don’t need to have everything figured out right now. But you do need to be working on figuring things out.

[universal-shapers]

The Role of Cortical Release in Chronic Fatigue Syndrome

Cortical release refers to a set of therapeutic practices and exercises aimed at reducing tension and promoting relaxation within the central nervous system. These techniques involve various mindfulness-based strategies, meditation, deep breathing exercises, and progressive muscle relaxation, among others. The goal of cortical release drills is to alleviate the overactive and hyperaroused state of the nervous system often observed in individuals with CFS.

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a complex and debilitating condition characterized by persistent and unexplained fatigue, often accompanied by a range of other symptoms such as pain, cognitive difficulties, and sleep disturbances. While the exact cause of CFS remains unclear, research into its underlying mechanisms has revealed a potential link between cortical release and symptom management.

Several studies and anecdotal evidence suggest that the chronic stress and overactivation of the sympathetic nervous system seen in CFS patients may exacerbate their symptoms. Cortical release drills can help mitigate this overactivity by promoting a shift toward parasympathetic dominance, which is associated with relaxation, reduced stress, and improved recovery.

Here are some key points to consider regarding the role of cortical release in CFS:

Stress Reduction

Cortical release techniques are effective in reducing stress and anxiety levels. Stress can exacerbate CFS symptoms, so incorporating relaxation practices into a patient's routine may help alleviate their condition.

Improved Sleep

Many individuals with CFS struggle with sleep disturbances. Cortical release drills can enhance sleep quality by calming the nervous system and promoting restful sleep.

Enhanced Cognitive Function

Cognitive difficulties are a hallmark of CFS. Mindfulness-based cortical release practices can improve cognitive function by reducing brain fog and enhancing mental clarity.

Pain Management

Chronic pain is often associated with CFS. While cortical release may not directly alleviate pain, it can help patients manage their discomfort by reducing the stress response, which can exacerbate pain perception.

Holistic Approach

Cortical release is part of a holistic approach to managing CFS. Combining these practices with other strategies such as graded exercise therapy, pacing, and dietary modifications can lead to more comprehensive symptom management.

Individualized Care

It's essential to recognize that CFS is a highly individualized condition. What works for one patient may not work for another. Tailoring cortical release drills to each patient's specific needs and preferences is crucial for success.

In conclusion, while there is no cure for Chronic Fatigue Syndrome, cortical release drills offer a promising avenue for symptom management.

 By addressing the role of the nervous system and promoting relaxation, these techniques can contribute to an improved quality of life for individuals living with CFS. However, it's important that patients consult with healthcare professionals who are knowledgeable about CFS to develop a personalized treatment plan that includes cortical release as part of a multifaceted approach to managing this challenging condition.

[nagiwritesthedevildom]

How the Brothers help take care of a Chronically Ill MC

I figured my very first post should be something near and dear to me, and since I'm currently dealing with a particularly annoying flare-up from weather changes I feel this is a good starting point.

This is based on my own chronic illnesses(Fibromyalgia and )Chronic Fatigue mainly) and as such, may not be the same for you!

CW for: Chapter 16 spoilers, vomit(Mammon and Beel's parts), mentions of food, breakdowns, medication (specifically pills), burnout(specifically medical)

I also HC Asmo as using He/They pronouns, so their section uses both!

Lucifer 

*This man is perfectly aware from the start of your chronic illness(es).

*But the name of a disease and actually seeing someone living with it are two very different things.

*if you need mobility aids, his first thought is how to implement ramps around the HOL and RAD within the next 24 hours.

*If you have an invisible illness ie: Fibromyalgia,Chronic Fatigue Syndrome, Crohn’s, RA, ME/CFS ect; I really wouldn’t expect his behavior to change much. 

*Honestly, even if you have a visible Illness or disability I don’t think his attitude would change.

*You were chosen for the exchange program, and as such, you are expected to complete your tasks by any means needed.

*At least, that’s how he thinks up until you have your first major flare. 

*I’m talking about the kind of flare-ups that leave you bedridden and barely able to talk level of flare-up.  

*This triggers Lucifer’s Big Brother Instincts.

*Especially if it happens after you’ve already been in the Devildom for a while. 

*Why did you wait until you were in pain to say something?

*Imagine having to explain how flare-ups work to him. 

*Explaining to him how the pain scale and Spoon Theory work probably rocked this old man’s world. 

*As soon as he finishes checking on you, he’s going to put more research into your illness(es).

*As the Avatar of Pride, Lucifer obviously prides himself (haha) on knowing everything he possibly can about his family, and you’re no exception.

*He starts paying attention to possible triggers and makes a list of them all.

*He also pays attention to things that help control the pain. 

*Does heat or cold ease the pain? What stretches do you like to do? What areas do you tend to have the most pain? 

*If you take medication, Lucifer is on top of it. He always makes sure you have enough, and will call in any refills you need at the end of the month. 

*If you take them multiple times a day, he has alarms set to remind him to text( or on less-busy days call) you to remind you to take them. 

*He’ll never hound you though. Lucifer trusts that between himself and his brothers, you’ll get enough reminders that you’ll have taken them. 

*Lucifer probably also sets reminders to remind you to switch activities if you use Pacing strategies.

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Mammon

*Oh my boy

*My sweet sweet summer child

*I think Mammon absolutely has the potential to be the best caretaker out of his brothers. 

*He picks up on the fact that you have pain pretty quickly seeing as he spends so much time with you. 

*The first time he sees you limp into the dining room, he immediately jumps to the conclusion that you had some “fun” the night before and is torn between congratulating you and freaking out over the fact that you got freaky. 

*Wait, what do you mean you slept weird and now the nerve in your hip is spasming????

*Are humans seriously that fragile???

*WAIT WHAT DO YOU MEAN YOU HAVE CHRONIC PAIN!?

*He absolutely freaks out and overreacts.

*Please take a few minutes to explain to him the major points of your illness(es) to him. 

*If you thought Lucifer paid close attention to your flare triggers, he has nothing on Mammon. 

*He’s your first, and that means he needs to be on top of anything that could potentially be harmful to you

*Or so he says

*The truth is, Mammon just hates seeing you in pain. 

*If stretching or light exercise is helpful to you, he’ll do your stretches with you. 

*If you respond well to heat, he goes out and buys an abundance of heating pads. You swear there’s one in every room now.

*Cold helps? Half the freezer is now full of those gel icepacks so you can always have as many as you need. 

*His bathroom smells like lidocaine patches now because he bought one box of every type he could find. 

*Massages? He’ll never admit it under the threat of death, but he begged Asmo to teach him how to best rub tension and soreness away. 

*If you take medication, he’ll “casually” remind you to take them before you guys leave the HOL everyday.

*If you forget them often(like me), this man will bring your pills to the table with him and makes sure you have a few bites of food before handing them over to you. 

*The first major flare-up with Mammon is the moment he realizes just how fragile his human is. 

*You had told him earlier you could feel a flare-up starting. 

*He put you through some stretches and iced/used heat, but you still weren’t feeling better. 

*He watches as one second you’re trying to get comfortable and in the next your face pales before your rushing to the bathroom as your breakfast comes back up.

*He holds your hair back(if it’s long enough) and rubs your back until you're done, before cleaning you up and getting you back into bed. 

*When you can’t move for almost an hour afterward, just completely wiped out from the pain, he realizes just how serious your illness(es) can be. 

*If this is how bad it can be with medicine and preventative measures, how bad was it before you got diagnosed?

*The thought honestly breaks his heart. 

*If you really want to hurt him though, tell him how much you wish you could just be “normal” and not have to deal with all the complications of your illness(es)

*After you’ve recovered, Mammon doubles down on making sure you do everything you need to to keep yourself healthy while also letting you feel as much of a sense of normalcy as possible

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Leviathan

*As much as I love this Otaku I don’t think he’d be the best caretaker.

*What he does excel at is being your cheerleader.

*You’ve gone two weeks without a flare? That’s awesome!

*You took your meds on time? Well totally incidentally, he just got a dupe of a super rare drop in Mononoke Land, so how about he sends it to you in celebration!

*You’re having a bad day? That’s ok! Even Henry has moments of weakness, so don’t beat yourself up! 

*While he normally likes the feeling of his sin on others, he hates it whenever Envy leaks off of you, because it happens whenever you don’t feel well. 

*Are you jealous of Beel’s strength?? He’s OP, even for a demon, MC! 

*He spent almost 2 whole days looking up a list of characters from different animes and games that have the same illness(es) as you, and offers to watch/ play them all with you whilst fighting off a tomato-red blush. (It’s almost like a D-D-date!!!)

*He’s not the one to go to if you need to remember to take your meds, or to do exercise with, but he’s great to have a Quiet Day with. 

*If you need to stay home from a flare, Levi will spend the day in your room, playing mobile games, or catching up on anime as a quiet reassuring presence. 

*He also picks up the terminology pretty fast, which I feel is pretty expected considering he knows LEET speak.

*”Yeah, they don’t have a lot of spoons today.”

*Speaking of Spoon theory, I feel like he’d resonate with the whole concept of it pretty well. He probably picks it up the fastest of the brothers. 

*Levi becomes your personal Spoon Counter. 

*Tell him how many you have in the morning, and he’ll keep track for you, so you don’t have to worry about over-doing it. 

*Another brother that keeps a heat pad or ice pack on hand for you. 

*I can see him buying a special comfy chair just for you when you tell him that sitting in things like beanbag chairs can trigger tension. 

*If you're someone that likes Floor Time, he’ll make sure you have a super soft blanket and a bunch of comfy pillows to lean on and support yourself with as needed. 

*The first time you have a really bad flare he honestly doesn’t know what to do, at least until you start sobbing, unable to handle the added stress of being bed-bound for the near future on top of your responsibilities in the exchange program

*You always listen to him, so from now on whenever medical-burnout hits or you have a particularly horrible flare, Levi becomes your personal soundboard. 

*He may even hold your hand if you crave physical comfort

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Satan

*Has the most medically-minded approach 

*At least, for a little while.

*He's probably at least heard of your illness(es) before in passing, if not read about them somewhere. 

*As much as he'd hate to hear it, like Lucifer he spends an afternoon or two doing as much research as he can

*Be prepared for him to want to try every single " coping strategy" he can find. 

*What do you mean you already tried this when you were diagnosed? 

*He wasn't there so it doesn't count. 

*He'll also put research into things like herbs or potions that could help alleviate any symptoms. 

*Why is he cooking with so much turmeric and ginger?? 

*No particular reason- though apparently they can help with inflammation, did you know that, MC?

*The first flare up you have, he's honestly kind of the worst

*Satan will want you to try out all of these different coping strategies he found online

*He'll push and push until eventually you snap. 

*Whether you scream until you turn red, break down into hysteric tears, or turn completely numb, that's the point he realizes he was treating you more as an experiment than a person. 

*Satan leaves you alone for the rest of the day.

*He'll go to one of his brothers, and finally just ask what works for you, and how to help without being overbearing while you don't feel well. 

*After that, the next flare goes much more smoothly.

*Satan will come in and either offer you a book you had been interested in, or offer to read to you if you're not up to reading.

*He'd absolutely have an album full of cute cats he's found, and will go through it with you because let's be honest

*Cute cats can heal any hurts

*He's another one that will set alert reminders for your medication, and shoot you a text if he's not around. 

*I also feel like if you have any "as-needed" meds(inhalers, nausea meds, OTC pain meds, anxiety reducers, migraine pills), he'd probably carry some around for you just in case you run out or forget them.

*Also reminds you to check if you need anything refilled so you don't run out.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Asmodeus

*Everyone saw this coming, but Self.Care.Queen(gender neutral)

*Asmo knows just about every technique to help ease tight muscles

*And They are not afraid to use them on you

*He will lay you down on his fluffy bed and rub all of your troubles away(non-sexual)

*Asmo has about 50 different scented massage oils and will let you choose every single time

*Similar to Satan, If you're into it or interested, they’ll look into naturopathic remedies that could help with inflammation and pain

*If you use Epsom salt or CBD oil-based lotions, he'll beg Solomon to get some from the Human Realm for you. 

*Asmo absolutely finds you the cutest pill organizers.

*Whatever your style is, they somehow find ones that match it! 

*Afterall, If it's part of your daily routine, it should look cute- just like you!

*Plus, it takes away some of the clinicalness of the situation, which is a win-win!

*Don't worry if you have mobility aids- they get the same treatment! 

*He found the cutest stickers being advertised on Devilgram the other day, and thought they'd look great against whatever color your aid is! 

*So let's get decorating!

*If you're having a flare-up, Asmo will be at your beck and call! 

*As long as you don't need anything heavy lifted, Darling.

*They'll draw as many baths or showers as you ask

*They'll massage you every hour if you request it. 

*His brothers can worry about the medical aspects, Asmo's priority is getting you comfortable again as quickly as possible! 

*He may not be the best at noticing your warning signs, but with enough time he'll start to learn how to pace all-day shopping trips into multiple dates. 

*They end up liking this more anyway because it means more time for just the two of you!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Beel

*My son

*My child 2.0

*Beel is absolutely the best at taking care of you!

*Your medication is either scentless, or very clearly smells unappetizing most likely, so Beel is never tempted to eat it.

*This turns him into the go-to for med management.

*If you're forgetful, Beel will hold onto your meds for the day, and drop them into your hands at the appropriate time along with a drink and a snack.

*I feel like Beel would also come up with names for your meds to try and take away some of the clinical aspect

*Pain meds are now known and “Ouch-byes” 

*Nausea meds are called “No-pukes”

*Anxiety or mood stabilizers are “Sad-be-gones”

*He’s also the brother that sits with you while you refill your weekly pill boxes. 

*It’s how to two of you came up with the names

*He also uses that time to make sure you restock any as-needed medications for the week. (I wish I had a Beel to do that for me…)

*Having a bad day?

*No need to walk, Beel is your personal chariot now.

*Another brother who does any stretching or exercise with you and Mammon every day. 

*Imagine doing yoga with Beel and Mammon. 

*Stunning.

*If Asmo or Mammon aren't available, he also gives great massages. 

*His hands are always perfectly warm, and after a few minutes he always finds the perfect amount of pressure to ease and release your tensed muscles. 

*He makes sure you have food handy on bad pain and flare days.

*Or if you're especially nauseous, he'll get you crackers or toast so you can at least try to get your meds down. 

*Beel hates seeing you in pain, and is another brother that keeps a list of your triggers handy 

*He can definitely go overboard though

*If stress is a trigger(which it often is with chronic pain diseases) he may develop a habit of guarding you a little too closely from other students or his brothers antics

*He'll try to pull you away from assignments the moment he thinks your getting stressed

*Definitely a brother you'll need to have a long conversation with regarding triggers and symptoms.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Belphegor

*For all that I shit on Belphie for being a brat baby

*I think he’s another brother that would be pretty good at helping with some of the less-medical aspects of your care

*Obviously, he’d be a HUGE help at falling asleep or staying asleep at night.

*Just dont ask him to remember when you need to take your meds. 

*Belphie can absolutely tell when you're getting close to triggering a flare-up and will force you to stop and take a break from whatever you're doing.

*Lucifer told you to do it?

*He’s already texting him and telling him you need a break, don’t worry and go lay down MC.

*While part of him genuinely just wants to keep you from being in pain

*I feel like another huge part of Belphie feels a lot of guilt whenever you have a flare.

*Seeing your pain contorted in pain not only reminds him of the Fall

*But also of what he did to you in the attic

*Everytime you wince and moan, he sees himself standing over your battered form again, just for a second. 

*Or he’ll see one of his brothers, falling apart as they turned from beloved angels to demons

*The first major flare is horrible for him

*At first, because he’s been in the attic he doesn't know about all the aspects of your illness(es) and he thinks you’ve been cursed by someone

*He won’t believe his brothers if they tell him this happens to you sometimes

*He’ll only believe it once you tell him yourself, through teary eyes that this isn’t even the worst one you’ve had

*After that he’s the trigger-tracker supreme.

*It’s going to be significantly colder tomorrow, make sure you bring extra pain meds

*You’ve been sitting for three hours, time to stretch please.

*Like, he keeps track of your triggers almost better than you do 

*He actually found one or two that you hadn’t been aware of.

*Also feel like he’d be shockingly good to take to Doctor's appointments??

*He’s also painfully blunt, and I think he’d tell your doctor if you were bullshitting about how much pain you’d been lately. 

*If you're suffering medical burnout, he’ll make a nest for you both in the planetarium and steals every pillow he can find 

*He’ll lay you down however you're most comfortable and just pet your head 

*No words, no thoughts

*Just the two of you for as long as you need the quiet comfort of another person.

*If you fall asleep, he’ll make sure to adjust you to make sure you wake up comfortably

*He probably just ends up texting Beel and asking him to come get you into bed. 

*He may be acting mature, but he’s still Baby.

[fireemblems24]

Verdant Wind - Final

Finally! Here's my last chapter of Verdant Wind. This route has really grown on me. So now 2/4 of the 4 route playthrough are over. CF and AM coming next.

Alright, so here I go picking my lover. As promised, time to pick Claude. I really want to see the lord trios' S-Supports.

PRE BATTLE

Alright, guys, just deployed for the final mission of VW.

Wait, why didn't we meet Nemesis halfway? Isn't he rampaging and stuff? Poor civilians.

Claude - What's our plan. Byleth - We defeat Nemesis. (Masterpiece of a strategy there)

LAMO Hilda calling it like she sees it and saying Lorenz's dad is a big coward.

You know, Silver Snow didn't really get a moment where everyone sat around and said why they were going to fight. It's a shame, because to date Lukas has the most badass reason ever: A battle between god and mortal? Sounds exhilarating to me. (He's like, oh, fighting god, good exercise).

Raphael talks about . . . food. He's really kinda one-note.

Still pissed we can't play as Judith.

This really feels like a chapter in a shonen battle manga before some big fight lamo.

BATTLE

Nemesis looks fucking annoying to fight. Rhea was basically a demonic beast on steroids, but nothing new, this guy looks irritating.

It also seems like there's wayyyyy more enemies this battle.

Oh, that's cool! I just noticed some of the enemies have the relics and are the OG users.

Is it bad that I REALLY don't want to kill the Blaiddyd, Gautier, or Fraldarius or Daphnel because that's Ingrid's weapon. Guys, I think I may be a bit to attached to the Faerghus friendship group.

Is it also bad that I wish they had Blaiddyd and Fraldarius standing next to each other. It would've been a good bit of lore at least :(

Or I'm just a problematic shipper, though they didn't put Gautier next to Fraldarius either. Very Felix of him though.

It's not Felix. It's not Ingrid. It's not Sylvain. It's not Dimitri.

I feel this one's going to be so much harder than SS with all those subbosses.

Aaaaand the water is poisonous. Because of course it is.

Claude's like that massive body of water that takes up most of the map, avoid it during the fight. Thanks, Claude, thanks.

This song is pretty epic though. The SS one was really good too though.

This level feels artificially dragged out with the poison water and million sub bosses. None of them were all that hard to deal with. I imagine this is much harder in maddening though.

Nemesis is legitimately annoying to deal with though.

This or CF had my least impressive units though.

I feel kinda bad for Claude that his final boss is some mindless zombie dude he has no connection too. SS got berserk Rhea, AM will probably get monster Edelgard, CF will likely get some super version of the TWSITD leader, and Claude gets . . . Mr. Zombie. Poor dude.

It's funny that I only had to kill him once. After Rhea, that wasn't so bad to be honest. Definitely easier than the SS final chapter.

Only 22 turns, not too bad.

POST BATTLE

Cut scene time!

Claude was MVP. He deserved it. He pulled his weight big time this chapter. He never dominated like Edelgard did early game or Dimitri has for a while now, but he really started performing in those final chapters.

LAMO Claude spouting lines like a shonen lead. This really feels liks the shonen route to me. Which isn't a bad thing. I love shonen. I think VW has turned out to be my 2nd favorite. Never would've guessed that half-way through the game.

Oh, dear God, the final lines are literally power of friendship. 100% shonen vibes.

That was a badass fight though.

Byleth smiling though. And the handshake. They feel more like friends than lovers, tbh. Especially compared to Dimitri and Edelgard. Claude really doesn't give major romance vibes in general.

DO U SEE MARIANNE AND JUDITH IN THE ENDING MURAL???? My girl Marianne! Yes.

Where's Byleth though?

Claude really focused on peace between nations. I really hope in Three Hopes, if the lords get supports, he and Dimitri find common ground over that and Dimitri's beliefs about Duscur.

S-SUPPORT

Time to marry Claude. I wonder if they'll make him as sappy as Rhea was lol.

I dislike how all these endings are a "united Fodlan" like it's a good thing. With what's going on in the world right now, it feels icky to celebrate the forced merging of countries. Even if in SS and VW it only happened because they all got destroyed, this positioning of their destruction as positive is what I don't like.

Mannnn it's going to feel SOOO awkward when I get to CF in the next day or so. I know real life and fiction are different, but ugh not good timing to get to "Imperialism wins and it's a good thing" the route.

Wait, what??? Claude won't be at my coronation??? What kind of BS is that???

Wait???? I thought I was marrying Claude??? Why is he leaving me for Almarya??? That's . . . not romantic.

OMG. Claude is choosing his dream of bettering the world over marrying me?

OMG this is hilarious. If I was really into the romance part of this game, I'd be so disappointed, but my respect for him has gone up by ignoring the self-insert and going off to do better things.

I also like how Claude is acknowledging that people need support and something to cling too sometimes. Exactly what Dimitri was saying. The opposite of what Edelgard believes.

Now I need a part 2 about Claude's fight for Almyara, but it's post AM so Byleth and Dimitri can come and help him out when he needs it in some epic cut scene.

It would also maybe finally give Claude the character development he deserved.

Aww, he had a ring too. But also the gall of that guy. He's like, I'm leaving you to rule another country, but uh marry me too I guess. It feels kinda tacked on.

He and Rhea both came clean about wanting to use Byleth for something. Dimitri doesn't have to. Wonder if Edelgard will?

OMG he's really like, I'm leaving, let's marry for when I eventually come back.

His picture's not bad. It's cute, Byleth grabbing his jacket.

But this was soooo much less romantic than Rhea's support.

That has to rank up there with Mr. Darcy among the worst proposals ever.

And wow, I don't think Byleth ever showed him her ring. What a bummer.

DATA

The MVPs this time are so much more spread out than they were for SS. Basically every character I used got it at least a few times except for Cyril.

Byleth and Hilda a bit more than the others, with Claude not showing up much at all until the end.

Paired endings time -

Anna got the same solo one. But she can't support anyone if I remember right. Catherine, Alois, Manuela, Haneman, and Flayn got the same as SS.

Ah! Annette solo becomes a teacher. Good for her! I like that ending.

Dorothea got married and had a good career. Deserved.

YESSSS, Marianne married Raphael. If she can't marry Dimitri, then I like him. And so cute, they run an inn together

Oh, Sylvain and Felix, haha. Guess they wanna do gay crimes together.

WHAT THE FUCK WAS THAT ENDING?? IS FELIX DEAD???

Dude, that's fucking brutal. They only meant once since after the war and it's only so Sylvain can hire mercenary Felix and then Felix's sword comes back, but not Felix??

Shit, that's tragic. I wonder if their paired ending being all hurt and no comfort is part of why they're so popular as a pairing?

OMG why are my Faerghus childhood babies are suffering. Dimitri dead in a pointless way. Dedue surviving alone and miserable. Felix dead later on. No mention of Sylvain being happy or married or anything. I REALLY hope Ingrid at least got a happy ending.

Why did Petra pair with Cyril?? Ok, I can accept this actually. Petra is doing her boss queen thing, and then older Cyril shows up to improve diplomatic relations and it's then where their romance starts. That's actually kind of cute. And I like the idea that all we saw was the groundwork. So much better than that last one, my GOD.

Ok, so Ingrid and Ignatz. Never in a million years would I have picked that pairing, but let's see.

Oof, so the people hated her at first, but between Ignatz and her being good at her job, they turned around and eventually the two married. At least she did better than the others.

Hilda and Seteth! OMG, talk about opposites lol.

That's actually pretty sweet and very random. They published childrens' books together. No mention of marriage, which is actually kinda nice. a M/F ending with no marriage between two completly incompatible people.

Leonie got Shamir! Haha, I liked the mini story and shoutout to the spider. So they formed a mercenary company together. That's 100% better than Leonie's solo ending.

Oh, shit, does this mean Lysithea gets Lorenz again? Like, no offense to Lorenz, but that's a shit ending. Even worse than Felix/Sylvain because at least that's got an air of tragedy that suits them and is a good story for angst and heartbreak, not Lysithea did all the work and got none of the credit.

Ugh, yes, Lysithea and Lorenz. Why? Poor Lysithea. I think I have her in CF, so she still has a chance for a decent ending.

Wow, like no one paired with a unit I was actually using. They all paired up with someone with 0 battles except for Lysithea and Lorenz and Byleth and Claude.

Byletha and Claude time, the asshole. What the fuck is that ending?? So the final battle wasn't the real final battle? We fought the Empire + TWSITD for the nth time? Why didn't we get to fight that? Feels kind of empty compared to Rhea and Byleth. Didn't say much about romance or about political changes, just there was another battle, Claude saved the day, Fodland and Almyra made friends.

Well, overall I liked VW by the end, but I gotta say, the Claude and Byleth ending stuff sucks compared to the stuff with Rhea. But I'm sure Claude has much better possible endings with someone else.

2 down, 2 to go.

CF is next. I need a Dimitri happy and alive for my final one, plus, it's not like the Russia and Ukraine stuff is going to go away anytime soon to make CF feels less eh . . . awkward.

[jenroses]

Hoo boy, let's see. First, I have both fibro and chronic pain, secondary to EDS, RA and a zillion other things. I have ludicrous numbers of sensitivities to meds, and am on a lot of meds, so a lot of the usual things like NSAIDS are out of the question for me. Here are some things I've found that help me.

PT with a clever physical therapist has been fundamental and life-changing. I have ME/CFS so I can't do the exercise stuff, but the thing that woman does with tissue mobilization is nothing short of magic. If someone can access PT with a PT who has a deep curiosity and flexibility of approach, I strongly recommend it. The most helpful therapies she does include lymphatic tissue work and ASTYM. She also does very gentle adjustments when things are out of alignment, and a lot of fascial release stuff. She also tapes my kneecaps to keep them from repeatedly dislocating, with a magic tape I don't react to even though I react to most adhesives.

Secondary to that, I do small measures between visits to reduce hypersensitivity to pressure. Most of mine seems to actually be caused by lipedema, which has symptoms similar to fibro. Anyway, when my trigger points are acting up, I can do very light touch that moves the skin up and then down (so I press my fingers into the outside of my arm, for example, and slide them toward the shoulder, and then toward the elbow, pressing only as firmly as I can without it hurting excessively.) Then I repeat it with slightly firmer touch, and firmer still, until the sensitivity is reduced. I use all of my fingers, flat on the skin, because poking pressure is worse than wide pressure. In more general terms, pay attention to what helps when other people work on your body, and try to adapt that to things you might be able to do for yourself at home.

Track your symptoms and try to figure out triggers. The most recent godawful thing has been migraines. I have a variety of strategies for those, including avoiding the foods that trigger migraines for me (I'm fine with most fermented foods but can't tolerate mold-based cheese or wine or wheat at all, and smoke in almost any form seems problematic. Specifically wildfire smoke, liquid smoked and certain smoked foods are likely to trigger migraines.) But also I've found that eating cherries and drinking honeybush tea and taking very hot showers are all more effective than most drugs at relieving pain for me most of the time. Except toradol. I miss toradol. The hot shower to the back of the neck seems to trigger an endorphin rush that is SO effective at helping me cope with pain anywhere in my body. It doesn't have to be a long hot shower, either. Figuring these things out requires being more aware of my body moment to moment than I normally prefer, but it's worth really keeping track when you're trying to figure this stuff out. I'm using an app to track my migraines right now and if nothing else, the fact that it asks me to pick from a list of comfort measures that i've already tried reminds me that there are still tools in the box. Also, taking the medication early helps better than toughing things out. I've nipped two migraines in a row in the bud by taking nurtec the moment I realized one was starting, then taking a hot shower and using at least one other comfort measure. If I wait an hour, the nurtec might take 4 hours to work or might not work at all.

It is vital to understand the concept of Pacing and Post Exertional Malaise. Even if someone doesn't have an official ME/CFS diagnosis, if you have a condition which gives you flares when you overdo, you need to really take a deep look at how you approach your good days. Believe me, I get wanting to stuff as much living as you possibly can into the days when you feel human again, but you'll get more of those good days if you set yourself some limits and stick to them. If you flare after doing five Things in a day, but you've had days that 3 things didn't make you flare, you may need to set a hard limit of 4 things even on days you feel well. My limit currently is Two Things. This might be PT and going to the store on the way home from PT, for example. I've had to stop doing things like "Dye my hair and do my nails on the same day" because dye my hair is already at least 2 things. (shower, and dealing the the sensory issues of dye.)

Study your environment and the things you do in a day and look for ways to make them hurt less inherently. So, for example, sitting at a computer at a desk is Very Bad for me in every way. I was able to set up my computing around an adjustable bed, and now being on the computer rarely counts as a thing at all. Taking showers standing up would be flat out dangerous for me at this point, I have a shower chair that holds my weight in both of the showers I use. I was getting really dizzy and thinking I might need a wheelchair around the house, but when we managed to reconfigure our space so that there is a comfortable place for me to rest in every room I frequent and there is no stretch in my house longer than 15 feet without a chair/couch/bed/stool I stopped being a fall risk at home. When I realized that going shopping without access to a mart cart was making me feel like I was going to throw up, we started looking at better long term options. A lightweight wheelchair I can get in and out of the car myself has vastly reduced my level of restriction. I am not housebound with my wheelchair.

Research your condition and talk to other people who have it. Leaving it all to the doctors is a good way to never quite get real relief when what is wrong is something as poorly understood as fibro or chronic fatigue. Fibro is often a fancy shrug when there are other things going on. It is also its own thing, and it can be true both that one has fibro AND that other things are going on. Fibro is a description of symptoms in a lot of ways, while Lipedema is a more specific description of one particular symptom that goes with certain physiological markers and there's a hell of a lot of overlap but the venn diagrams aren't a perfect circle. I absolutely listen to my rheumatologist about my rheumatoid arthritis and take the drugs he recommends for that, but we work together on the things that are less well-understood.

Beware snake oil, but also beware people who dismiss all supplements as bunk. I look for the research, and the rationale, and I look for it from people who aren't trying to sell me something. Supplements can help: I've seen the right supplement help a child deficient in a specific thing make huge progress. Magnesium made my asthma go from an everyday thing to a once or twice a year thing, tops. And some of them are flat out useless or harmful, and it takes some diligence to sort the wheat from the chaff.

Don't underestimate the value of a comfortable bed, the right kinds of pillow support, comfortable clothing that does not make your condition worse, comfortable shoes, and foods that don't make you feel worse. I'm not going to give specific dietary advice, other than that I've found it valuable to avoid foods that cause me pain. Figuring out what does and doesn't make things worse is HARD. It's work. And it can cost money. For people on Medicaid, some states have flex funds that can help with non medical things that may have a medical benefit.

Try to get clear diagnoses for the things that are causing you misery. Knowing that I had EDS led me to a mast cell disorder diagnosis and POTS diagnosis, and the mast cell thing made all sorts of things make more sense. ME/CFS explained almost everything that EDS didn't, for my whole life, and all of these diagnoses pointed me at measures to make my life less miserable and more functional. EDS meant I could ask for help stabilizing problem joints and finding adhesives that would work on my fragile skin, and stopped me from doing party tricks that were making things worse. Mast cell disorder got me on the right combination of meds to make it so that I could eat food again without getting sick from literally everything. I still have a list of foods I don't tolerate but it's much, much shorter. The POTS diagnosis made me a whole lot more diligent about hydrating properly. Knowing about ME/CFS meant that I could learn about pacing and be less likely to tank hard and get sick. If I'd figured these things out when I was 20, I think I would not be so disabled now, but we just didn't know.

do you have fibromyalgia or chronic pain? what works best for you? helps you get through the day? what helps you want to keep going? is there research out there that sparks some hope?

i'm asking because one of my dearest friends is going through a really hard phase and it hurts to see them like that.

you can dm me if you'd prefer, i'll make sure to leave anon open.

thank you

[sapphicautistic]

The observed metabolic effects may be associated with tissue hypoxia caused by an underlying pathology related to an autoimmune mechanism (13).

An autoantibody-mediated mechanism may influence, indirectly or directly, the fine-tuned autoregulation of blood flow required to meet the metabolic demands of tissues. Endothelial dysfunction has been shown in patients with ME/CFS (65, 66), and this was also supported in substudies linked to the CycloME and RituxME trials (67).

The reduced levels of certain arachidonic acid derivatives seen in the present study may impact the vascular tone and blood flow (68). Furthermore, abnormal RBC deformability has been reported in ME/CFS, which may affect their transport through capillaries (69).

These findings pointing to vascular dysfunction support that exertion-triggered tissue oxygenation may be impaired, and clearly this would contribute to lowered activity tolerance and involve mitochondrial energy metabolism.

One may also speculate that symptom-generating mitochondrial effects are pathologically reinforced by exertion, as observed after excessive exercise (70). Limited, and possibly local, tissue hypoxia and lactate accumulation may also be associated with chronic inflammation (71, 72). Oxygen restriction increases the demand for TCA anaplerosis (73), which also seems to be important in ME/CFS (15). ...

Reduced tissue perfusion through dysautonomia and/or inadequate autoregulation of blood flow have been found in persons with unexplained exertion intolerance, possibly via mechanisms of endothelial and microcirculatory dysfunction effects on vascular endothelium (66, 76, 77, 79, 80).

In summary, we find that the metabolic changes in patients with ME/CFS are compatible with disrupted energetics enforced by tissue hypoxia on exertion. Further investigations should be performed to pursue this theory and to identify possible support strategies for improved clinical care. ...

In summary, the study provides a map of metabolic alterations occurring in patients with ME/CFS. We find that the observed changes are compatible with elevated energy strain, for instance, caused by tissue hypoxia on exertion. The potential roles of specific pathways will have to be validated and explored in further targeted studies.

[compassionmattersmost]

Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

A Gentle Reflection on Pacing, Rest, and Navigating the Challenges of Chronic Fatigue Syndrome There are days when the body speaks softly, a whisper of weariness that hints at the storm ahead. And though we move carefully, mindful of each step, there are moments when the smallest effort—a turn of the mind, a spark of emotion—awakens something deeper. This is the dance with post-exertional…

[rotationalsymmetry]

Living with CFS/ME overview (your mileage may vary):

Doctors: can’t live with ‘em, can’t live without ‘em. Do your own research if you can, if you can tell something is bad for you don’t do it, and if your doctor doesn’t believe anything is wrong with you get a new one (if at all possible.) Don’t expect perfect understanding, do deal with your feelings outside of appointments and not during them, do have clear requests as much as possible. Do expect competence: not dismissiveness, not ignoring what you say, not failing to do relevant lab tests. Write stuff down, before and after. If possible, have someone else come with you to appointments (especially if you have serious brain fog issues and/or are the sort of person doctors tend to not take seriously.) With emails, some doctors will only answer one question per email, so if you have five questions that means writing five separate emails. Don’t be afraid to be pushy, as long as you’re pushing for something the doctor can actually give you.

Getting stuff done. You can’t. At least, not as much. Do you need help with: housework, shopping, childcare, filing for benefits? Personal hygiene? Figure out how to get what you can and learn to live without what you can’t. Delegate as much as possible. Whatever weird feels you have about accepting help, figure out how to set them aside and accept help anyways.

Other people: in my experience most people will take your lead. If you tell them you’re not sure what’s going on or aren’t sure what to do about it, you will get more suggestions and advice than you know what to do with. If you want sympathy, you might get that (or you might get unwanted advice — sometimes saying explicitly what you want helps.) If you talk about your illness like a totally routine thing that you’ve totally got, the advice and general “oh shit I want to help but don’t know how” goes away. In my experience.

On that note: it’s OK and a good idea to tell people explicitly what you want from them. “If we’re going on vacation together I need a place to stay with no stairs.” “What would really help is if someone could run groceries once a week for me or pay for delivery.” “I could really use help from someone who knows how to read scientific articles.” “I could really use some patience and understanding about sometimes having to cancel plans at the last minute.” “I need a therapist who’s worked with people with chronic illness before.” Whatever.

Fuck exercise. Or rather: stretchy gentle exercise can be fine/good, strength exercises that you can do without raising your heart rate might be fine; anything that raises your heart rate is much higher risk. Walking is appropriate exercise for people with CFS, just be careful to not overdo it. (I am not joking.) Personally, I do a lot of yoga, but I’m not exactly doing sun salutations. It’s yin yoga and restorative yoga and a small amount of strength exercises. And...pranayama. Exercise for people with CFS/ME doesn’t look the same way as it does for people without it. That thing where it’s good for healthy people to take the stairs and this and that? Not for you. Be lazy. Do things the lowest energy way possible.

PEM and pacing: it’s all about the activity intolerance. Sometimes you run out of steam right away, sometimes it happens two days later. If your body says “stop” it means it; if it gives you a green light it might be lying. If you’re getting some days that feel almost normal and some days when sitting upright is a Herculean task, chances are if you do a lot less and try to do approximately the same amount of stuff each day, you’ll figure out what your sustainable “energy envelope” is. Or how many spoons you have, if you prefer that metaphor. And, most likely, you’ll end up with way fewer “can’t sit up” days.

Breaking things up means you can do more with less consequence. Eg: wash dishes until the first hint of feeling tired, take a break and sit or lie down for five minutes, then keep going. Pushing past the point you feel tired is risky.

In particular, in some situations you may be excited or stressed enough to not notice when you’re tired, so sometimes it makes sense to plan breaks rather than relying on the self awareness approach. When I play games with my partner, for instance, we set a timer for half an hour.

Adaptive equipment and behaviors: I use a folding stool in my everyday life and a wheelchair (provided by the airport) if I have to travel by plane. At one point I figured out how to wash dishes in a plastic basin sitting down (although, paper plates are an option too.) My partner and I leave a couple cooking pots on the stove and the things I use most often on the counter, since digging up a pot from the floor level cabinet that’s full of pots is much more tiring than the pot already being where I want it. In general, stuff above shoulder level or below waist level is significantly harder to get to. If showering standing is tiring, get a shower chair. Some grocery stores have motor scooters that can be used by disabled customers (that means you.) Grabbers can help with things like when a sock falls on the floor and you don’t want to have to bend to pick it up. If your walking is very limited, but you have someone who can push you around, a rolling walker with a seat may be more affordable than a wheelchair.

How to get your doctor to prescribe you a wheelchair so that your insurance will cover it: your doctor is worried you’ll lose mobility due to walking less, so if you actually want a wheelchair so that you can get outside and do more stuff for longer, focus on that. Ditto for a scooter. I’ve found writing a comprehensive list of what I can’t do or can only do with great difficulty, and handing the list to my doctor, is significantly more effective for getting taken seriously than mentioning one or two limitations and expecting the doctor to be able to extrapolate. Make it easy for them to do what you want them to. (Sorry if this sounds manipulative. My experience is that if you come in assuming your doctor will just give you what you need as long as you’re up front and trust them, you’re going to be sadly disappointed. I was not like this before I got CFS and spent months practically begging doctors to take me seriously.)

Taking naps or non-sleeping lying-down rests during the day might help. Yoga nidra, progressive muscular relaxation, or some sort of guided visualization can help with relaxation. You can also just lie there and let your mind wander, but if your mind tends to wander to sad or worrying sorts of places then you should give it something to do. One note of caution: if you’re near your limit you might feel more tired after a rest, that doesn’t mean the rest was bad for you but it does mean you gave the tired a chance to catch up with you. I do think the benefit comes as much from doing it regularly over time as from any one rest by itself though. (I can’t do anything on time, so for me “regularly” means “to within about two hours, most of the time.”)

On that note: your feelings matter. Stress and extreme emotions can take as much out of you as grocery shopping or a two hour zoom call. So...therapy if possible, self help books, doing things that help you feel calm and put things in perspective. You might need new coping strategies if your old ones take too much energy.

Some people with CFS have more energy/activity tolerance/spoons in the morning and less late in the day, others like me are the opposite. I couldn’t find my pattern when my energy levels were swinging wildly from day to day, but eventually when I got things more leveled off I figured it out. If this is the case for you, planning hard stuff for your best time of day and light stuff for your worst times is a good idea. For instance, I shower in the evenings rather than the mornings.

Once you’ve gotten your symptoms to more or less level off, if you get to that point, you can try very, very gradually expanding your activity levels. When I say gradually, I mean gradually, and be ready to go back to less activity any time things get worse again.

Thing is: if you don’t use all your energy, it does seem to sort of build up a “reserve” so you can bounce back from expected or unexpected stressors (illness, travel, etc.) But when your reserve runs out, it takes much longer to recover. So, there’s something to be said for not going at 100%.

In particular, don’t try to go back to 100% too quickly after one of those stressors, like a cold or (sigh, speaking from experience) a cross-country move, even if you feel like you can. Where 100% means using all of your spoons/energy envelope, not functioning at 100% of what a healthy person can do.

Plan ahead of time how you’re going to handle special occasions like holidays, a visiting friend or relative, or travel. “If the movie theater is too loud I will have to leave” etc. When I got married, I planned when and where I was going to take rests, and planned absolutely nothing for the days after. (Interestingly: I did better afterwards than I thought I would, even though I got major brain fog during the reception. Apparently the stress before the wedding was messing me up more than all the activity and socializing at the wedding itself.) We went on our honeymoon a full month later — even a relatively restful trip is still more tiring for me than staying home.

Get advice from multiple sources. This list is aimed at, well, basically myself and anyone with similar symptoms. I’m not addressing pain because that’s not one of my symptoms, but if it’s one of yours you should absolutely get advice from people who experience pain. Likewise, I’m not housebound so I’ve got limited advice there. I don’t have kids, so I don’t have much in the way of parenting advice, and I’m not working so I don’t have “how to handle a job when you have CFS” advice. Oh, and I’m in the United States, what you can expect the government, schools, businesses etc to do for you can vary considerably by country.

A lot of this comes from this website and backed up by my own experience. They have lots of easy to read articles and success stories, and email-based “classes” (think structured support group, not like college class) on living with CFS/ME or fibromyalgia. They don’t get money from promoting supplements or whatever, which is a thing I look for as a sign of integrity. (Not that supplements can’t help, but if someone is getting money from saying they do it’s harder to trust if they’re being fully honest.) There’s also groups on FB and I’m sure other places that are well suited for asking questions and getting advice. There’s books, both on the disease itself and possible treatments (mostly highly speculative and/or alternative) like Living Well with Chronic Fatigue Syndrome and Fibromyalgia, and on the “how do I live like this?” side of things, like How To Be Sick. Point is: you don’t have to go it alone.

Postscript: recovery. The odds that you will get somewhat better are pretty good. The odds that you will make a full recovery, given the current knowledge about CFS/ME, are low. I know that doesn’t feel good if you’re newly diagnosed (side note: you don’t need officiant diagnosis to start assuming that you’ve probably got CFS and looking for resources, I didn’t, official diagnosis can take a while.) I know when you’re new to this, all you want is to return to normal. (And you might; some people do.) Here’s the thing though: even if you don’t get back to normal, it’s not always going to feel this bad. What feels bad isn’t mostly the state you’re in, it’s mostly change: improvement feels good, getting worse feels bad. If you level off or get a bit better (super likely) and start comparing your current state to your low point, rather than when before you got sick, you’ll start to feel better again. It’s the adjustment period that’s rough, more than the illness itself.

It’s grief, it’s loss: grieving the life you had and the future you hoped for, and the way people respond to that is similar in many ways to how people respond to losing a loved one. Therapy might help, religious guidance if applicable to you might help (if not, perhaps consider this a good time for a deep dive into philosophy, or some form of creative self-expression like drawing or writing poetry); whatever you do, be aware that this is a huge thing to have to come face to face with, and it’s normal to struggle with it. (And: it’s not always going to feel this bad.)

It’s possible to have CFS/ME, and have a good life. It’s possible to have CFS/ME and have many sources of joy and delight and excitement and satisfaction and connection. It’s possible to have CFS/ME and have a deep sense of purpose and meaning, even if your old sources of purpose and meaning are no longer available. It’s possible to live well.

[pope-francis-quotes]

1st March >> (@ZenitEnglish By Virginia Forrester) #PopeFrancis #Pope Francis’ Angelus Address: On the Gospel of the First Sunday of Lent: Jesus Is Led by the Spirit into the Wilderness to be Tempted by the Devil.

‘Jesus Doesn’t Dialogue with the Devil, Jesus Answers the Devil with the Word of God; Never Dialogue with the Devil’

Here is a ZENIT translation of the address Pope Francis gave today, before and after praying the midday Angelus with those gathered in St. Peter’s Square.

* * *

Before the Angelus:

Dear Brothers and Sisters, good morning!

In this first Sunday of Lent, the Gospel (Cf. Matthew 4:1-11) tells us that, after the Baptism in the Jordan, Jesus “was led by the Spirit into the wilderness to be tempted by the devil” (v. 1). He prepares Himself to begin His mission to proclaim the Kingdom of Heaven and, already as Moses and Elijah (Cf. Exodus 24:18; 1 Kings 19:8) in the Old Testament, He does so with a forty-day fast. He enters “Lent.” At the end of this period of fasting, the tempter, the devil breaks in and seeks three times to put Jesus in difficulty. The first temptation takes its cue from the fact that Jesus is hungry, and he suggests to Him: “If you are the Son of God, command these stones to become loaves of bread” (v. 3) — a challenge, but Jesus’ answer is clear: “It is written, ‘Man shall not live by bread alone, but by every word that proceeds from the mouth of God’” (4:4). He refers to Moses when he reminds the people of the long journey made in the desert, in which they learned that their life depended on the Word of God (Cf. Deuteronomy 8:3).

Then the devil makes a second attempt (vv. 5-6); he becomes more astute, also quoting Sacred Scripture. The strategy is clear: if you have so much trust in God’s power, then experience it; in fact, Scripture itself affirms that the Angels will bear you up (v. 6). However, also, in this case, Jesus doesn’t let Himself be confused, because one who believes knows that God doesn’t put one to the test, but entrusts himself to His goodness. Therefore, to the words of the Bible, instrumentally interpreted by Satan, Jesus answers with another quotation: “It is also written: ’You shall not tempt the Lord your God’” (v. 7).

Finally, the third attempt (vv. 8-9) reveals the devil’s real thought: because the coming of the Kingdom of Heaven marks the beginning of his defeat, the Evil One wants to divert Jesus from bringing His mission to fulfillment, offering Him a prospect of political messianism. However, Jesus rejects the idolatry of power and of human glory and, in the end, chases the tempter away, saying to him: “Begone, Satan! For it is written, ‘You shall worship the Lord your God, and Him only shall you serve’” (v. 10). And at this point, near Jesus, faithful to the Father’s order, Angels approach to minister to Him (Cf. v. 11). This teaches us something: Jesus doesn’t dialogue with the devil. Jesus answers the devil with the Word of God, not with his word. Very often in temptation, we begin to dialogue with the temptation, to dialogue with the devil: “yes, but I can do this . . ., then I can go to confession, then this, then that . . .” Never dialogue with the devil. Jesus does two things with the devil: He chases him away or, as in this case, He answers with the Word of God. Be careful: never dialogue with temptation, never dialogue with the devil.

Today also Satan breaks into people’s life to tempt them with his enticing proposals; he mixes his voice with the many voices that seek to tame the conscience. Messages arrive from many parts that invite you to “let oneself be tempted” to experience the thrill of transgression.

Jesus’ experience teaches us that temptation is an attempt to follow alternative ways than those of God: “But, do this, there’s no problem, then God <will> forgive! But have a day of joy . . . “ “But it’s a sin!” — “No, it’s nothing.” They are alternative ways, ways that give us the sensation of self-sufficiency, of the enjoyment of life as an end in itself. However, all that is illusory: very soon we realize that the more we move away from God, the more we feel defenseless and helpless in face of the great problems of existence.

May the Virgin Mary, Mother of Him who crushed the head of the serpent, help us in this time of Lent to be vigilant in face of temptations, not to submit ourselves to an idol of this world, to follow Jesus in the fight against evil, and for us also to be winners as Jesus.

© Libreria Editrice Vatican

[Original text: Italian] [ZENIT’s translation by Virginia M. Forrester]

After the Angelus:

Dear Brothers and Sisters!

I greet you all, faithful of Rome and pilgrims from Italy and from various countries. In particular, I greet the young people of Formentera, the faithful of Ostuni and those of the parish of Saint Pius of Pietrelcina in Rome. I wish for you all that the Lenten journey just begun is rich in fruits of Spirit and rich in good works.

I am somewhat saddened by the news arriving of so many displaced people. So many men, women, and children chased away because of the war, so many migrants that ask for refuge in the world, and help. In these days, it has become very strong. Let us pray for them.

I ask you also to remember in prayer the Roman Curia’s Spiritual Exercises, which begins this evening at Ariccia. Unfortunately, my cold constrains me not to participate this year: I will follow the meditations from here. I unite myself spiritually to the Curia and to all the people that are living moments of prayer, doing the Spiritual Exercises at home.

Have a good Sunday and enjoy your lunch!

© Libreria Editrice Vatican

[Original text: Italian] [ZENIT’s translation by Virginia M. Forrester]

1st MARCH 2020 15:26ANGELUS/REGINA CAELI

[anumberofhobbies]

  October 2, 20175:40 AM ET   Heard on Morning Edition 

Health organizations are emphasizing that myalgic encephalomyelitis/chronic fatigue syndrome is a serious long-term illness, not a psychological disorder, and that standard forms of exercise do not help. Instead, they're acknowledging that exercise can make the disease much worse unless doctors and patients are very careful.

The Centers for Disease Control and Prevention has already revised its patient guidelines on ME/CFS and is currently revising guidelines for physicians.

The action by the federal agency is a significant shift in the years-long controversy over diagnosis and management of the disease, which is characterized by months of incapacitating fatigue, joint pain and cognitive problems.

...

Many websites have outdated information that perpetuates a key misperception about CFS: "That you can exercise your way out of this illness," says Dr. Nancy Klimas of Nova Southeastern University in Miami, who has served on the ME/CFS advisory committee for the Department of Health and Human Services and has treated people with ME/CFS for 30 years. "That's just not true. You can exercise, but you have to be extremely cautious. And it will not cure you." 

...

In particular, she says, the British guidelines, set by the National Institute for Health Care and Excellence, have been harmful for patients.

"They are rooted in a very controversial study, which suggests people do a much more vigorous and much more dangerous form of exercise," Klimas says. "Those guidelines have hurt a lot of people. And they were implemented all around the world."

The controversial recommendations on exercise can be tracked back to an influential but erroneous paper published in 1989, in which British doctors offered a "new approach" for treating the disease.

In the paper, the doctors largely dismissed the disease as psychological. They said the pain patients felt after exercising was basically in patients' heads. And if they exercised long enough, these symptoms would subside.

...

Jump ahead 30 years, and what is known about ME/CFS has greatly evolved, says biologist Maureen Hanson, who studies ME/CFS at Cornell University.

Doctors now know that the disease makes people incredibly sensitive to exertion. "There's some level of exercise that makes your symptoms get worse," Hanson says.

...

But the medical community has been slow to come up to speed on ME/CFS, Hanson says. Many doctors aren't aware of the dangers with exercising. Some still have the misperception the disease is psychological. And you can still find the two original treatment strategies promoted on major medical websites, such as the Mayo Clinic and WebMD. 

...

This past summer, the agency removed the last remnants of the two controversial recommendations. In particular, the agency no longer lists cognitive behavioral therapy as a management tool for ME/CFS. And it removed the phrase "graded exercise," which to many doctors in the field referred to the controversial strategy promoted by the NHS in England.

"We had heard from patients that doctors were using this [guideline] as an excuse to tell patients, 'you must do more and more exercise,' and that's not what it was intended to reflect," says CDC spokesperson Jennifer McQuiston. "We do not want to cause harm."

The new guidelines emphasize the need for doctor supervision when it comes to exercise programs for people with ME/CFS, McQuiston says. And doctors need to understand that this program needs to be tailored specifically for each person.

"We're attempting to caution health care providers, who may be looking at our website: When managing a patient with ME/CFS, it can't be a one-size-fits-all program."

“

[craftygal65]

Why You Should Rest—a Lot—If You Have COVID-19

Until recently, running was a major part of Emma Zimmerman’s life. The 26-year-old freelance journalist and graduate student was a competitive distance runner in college and, even after she graduated, logged about 50 miles per week. So she tentatively tried to return to her running routine roughly a week after a probable case of COVID-19 in March, doing her best to overcome the malaise that followed her initial allergy-like symptoms. Each time, though, “I’d be stuck in bed for days with a severe level of crippling fatigue,” Zimmerman says.

Months later, Zimmerman still experiences health issues including exhaustion, migraines, brain fog, nausea, numbness, and sensitivity to screens—a constellation of symptoms that led doctors to diagnose her with Long COVID. Though she can’t know for sure, she fears those workouts early in her recovery process may have worsened her condition.

“I had no idea that I should try to rest as hard as I needed to rest,” she says.

Stories like Zimmernan’s—illness, improvement, exercise, crash—are common in the Long COVID world. And they highlight what many researchers, patients, and advocates say is one of the most powerful tools for managing, and potentially even preventing, Long COVID: rest.

The only guaranteed way to avoid Long COVID is not to get infected by SARS-CoV-2. But if someone does get sick, “Rest is incredibly important to give your body and your immune system a chance to fight off the acute infection,” says Dr. Janna Friedly, a post-COVID rehabilitation specialist at the University of Washington who recovered from Long COVID herself. “People are sort of fighting through it and thinking it’ll go away in a few days and they’ll get better, and that doesn’t really work with COVID.”

Researchers are still learning a lot about Long COVID, so it’s impossible to say for sure whether rest can truly prevent its development—or, conversely, whether premature activity causes complications. But anecdotally, Friedly says many of the Long COVID patients she sees are working women with families who rushed to get back to normal as soon as possible. It’s hard to give one-size-fits-all guidance about how much rest is enough, but Friedly recommends anyone recovering from COVID-19 stay away from high-intensity exercise for at least a couple weeks and avoid pushing through fatigue.

For people who have already developed Long COVID, rest can also be useful for managing symptoms including fatigue and post-exertional malaise (PEM), or crashes following physical, mental, or emotional exertion. The U.S. Centers for Disease Control and Prevention recommends “pacing,” an activity-management strategy that involves rationing out activity and interspersing it with rest to avoid overexertion and worsening symptoms.

In an international study published last year, researchers asked more than 3,700 long-haulers about their symptoms. Almost half said they found pacing at least somewhat helpful for symptom management. Meanwhile, when other researchers surveyed about 500 long-haulers for a study published in April, the overwhelming majority said physical activity worsened their symptoms, had no effect, or brought on mixed results. That may be because long-haulers have impairments in their mitochondria, which generate energy cells can use, recent research suggests.

Before Long COVID existed, researchers and patients encouraged rest and pacing for the management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The condition’s hallmark symptoms include PEM and serious, long-lasting fatigue—diagnostic criteria that many people with Long COVID now meet. A study of more than 200 people with Long COVID published in January found that 71% had chronic fatigue and almost 60% experienced PEM.

For years, clinicians tried to treat ME/CFS patients by gradually increasing their physical activity levels. But that practice has since been shown to be not only ineffective, but often harmful, because people with ME/CFS “have a unique and [pathological] response to overexertion” due to cellular dysfunction, explains Jaime Seltzer, director of scientific and medical outreach at the advocacy group MEAction. Most people with ME/CFS prefer pacing over exercise-based therapy, one 2019 study found.

To pace effectively, people must learn to pick up on cues that they’re overdoing it and unlearn ingrained ideas about productivity, Seltzer says. “If you’re doing laundry, for example, there’s nothing that says you have to fold every single item in one sitting,” she says. Breaking up tasks may feel odd, but it can be crucial for preserving energy.

People with new Long COVID symptoms should keep a log of their diet, activity, sleep, and symptoms for a couple weeks to learn their triggers, Friedly says. For those who can afford one, a fitness tracker or other wearable can also be helpful for assessing how much exertion is too much, Seltzer says. Once someone has an idea of behaviors that improve or worsen symptoms, they can use that information to plan their days and divide activities into manageable chunks.

For many people who test positive for COVID-19, however, even taking a few days off from work to isolate is a financial and logistical challenge. Many people have no choice but to return to physically taxing work or responsibilities like child care as soon as possible. “Rest is absolutely advice that’s weighted socioeconomically and politically,” Seltzer says.

People with Long COVID or ME/CFS may be able to secure workplace accommodations, such as working from home, taking on a role that can be done sitting instead of standing, or applying for disability if necessary. Seltzer also suggests leaning on friends, faith groups, or mutual aid networks for help with some tasks. Beyond that, Friedly recommends looking for creative ways to use less energy throughout the day. When she was living with Long COVID symptoms, she bought many pairs of identical socks so she’d never have to waste time and effort searching for a match.

Things like that “may seem small,” she says, “but if you add those up throughout the day, they make a big difference in terms of how much energy you’re expending.”

[compassionmattersmost]

6: Gentle Movement and Stretching in the Gym: Reconnecting with Your Body

Now that you’ve taken the significant step of entering the gym without the pressure to exercise, you might feel ready to begin exploring gentle movement. For people living with Post-Viral ME/CFS, this phase requires a delicate balance—respecting your energy levels while slowly reconnecting with your body through light movement and stretching. In this blog post, we’ll look at how to introduce…

[anumberofhobbies]

and Tracey ain't kiddin ... here, have a couple references from the CDC, the U. S. Centers for Disease Control and Prevention,

Overview ME/CFS is a biological illness that affects many body parts. It causes severe fatigue not improved by rest, problems thinking and sleeping, dizziness, pain, and many other symptoms. People with ME/CFS may not look sick but can't do their normal activities. ME/CFS may get worse after they do any activity -- physical or mental. This symptom is called post-exertional malaise (PEM). After they exert themselves, they may need to stay in bed for an extended time. About 1 in 4 people with ME/CFS are confined to bed at some point in their illness. Did you know?‎ It's estimated that up to 3.3 million people in the United States suffer from ME/CFS. More than 9 in 10 people with ME/CFS have not been diagnosed by a doctor. ME/CFS costs the U.S. economy about $18 to $51 billion annually in medical costs and lost income. It is difficult to diagnose because there is no specific test for ME/CFS. One reason that people with ME/CFS have not been diagnosed may be limited access to healthcare. Another reason may be a lack of healthcare providers who know about ME/CFS and how to recognize it. Anyone can get ME/CFS. It doesn't matter what age, gender or ethnicity they are. However, some groups are more affected than others.

Symptoms to potentially address Post-exertion malaise PEM symptoms can be severe. They can begin shortly after the exertion or several days later. Typically, symptoms get worse 12 to 48 hours after the activity or exposure. Symptoms can last for days or even weeks. PEM can be addressed by activity management, also called pacing. The goal of pacing is to learn to balance activity and rest to avoid PEM flare-ups. To do this, people with ME/CFS need to find their individual limits for mental and physical activity. Then, they need to plan activity and rest to stay within those limits. Some patients and doctors refer to staying within these limits as staying within the "energy envelope." People with ME/CFS have different limits for physical or mental activity, compared to others without the disease. Keeping activity and symptom diaries may help them find their personal limits, especially early in their illness. Being mindful of personal limits can help people with ME/CFS cope with their illness. It can help them feel like they are managing the illness, rather than the illness controlling them. People living with ME/CFS may find that everyday activities may be enough to cause a relapse or "crash". Activities such as buying groceries, brushing their teeth, or interacting with others may bring on PEM. It's hard to avoid these situations. But people with ME/CFS can learn to monitor their activities throughout the day. Then, they can place limits on what they do if needed. When having a good day, people with ME/CFS may be tempted to try and "push." This involves increasing activity beyond what the person would normally attempt, often to make up for lost time. However, this can then lead to a "crash", or worsening of ME/CFS symptoms. The cycle can then repeat itself after people start recovering from the crash. Rehabilitation specialists or exercise physiologists who understand ME/CFS may help people with ME/CFS adjust to living with the disease. Finding ways to make activities easier may be helpful. Some examples may include sitting while doing the laundry or showering, taking frequent breaks, and dividing large tasks into smaller steps. Some patients find wearing heart rate monitors helps them track how hard their body is working, preventing PEM. Patients who have learned to listen to their bodies might be able to increase their activity level. However, ME/CFS is unpredictable. PEM symptoms may not start right after exercise. This makes it important to tailor each treatment plan to the individual, with their input. Exercise is not a cure for ME/CFS. Vigorous aerobic exercise can benefit people with many chronic illnesses. But people with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS. However, it is important that patients with ME/CFS undertake activities that they can tolerate, as described above.