#avoiding an ME/CFS crash

[helenwhiteart-blog]

Slowly inching back outside after a crash

I’ve done really well at starting to pull myself out of a pretty deep two-ish month long ME/CFS crash, not that I’m completely out of it by a long chalk but I want to be able to take pause to appreciate where I have got to considering how long and deep a crash can be (and the many months of overexertion that had lead up to this one, risking that it might take just as long to get out of). Also, a…

[compassionmattersmost]

Embracing the ME/CFS Crash: A Journey of Pacing, Overdoing, and the Practice of Witnessing

Reminder: If reading this post becomes tiring, remembert to pause and rest. Pacing applies to all activities, even the ones we love, like reading and learning. Come back to this post later if you need to. Practicing pacing, even in small moments, is an essential part of living well with chronic fatigue syndrome. Introduction There’s a rhythm to living with chronic fatigue syndrome (CFS), one…

[transfaguette]

let me tell you this, person with ME/CFS or long covid:

the day after you really exceeded your energy limits, you are probably gonna feel OK. maybe a little tired, but little enough that you think, maybe you got away with it. But, its a trick. In a few days is when the crash will actually hit, and it will only be worse if you don’t take precaution asap.

It’s super important, since we can’t always avoid exertion, to try your best to 1. incorporate rest into normal activity. take several days to do one chore, its not illegal. and 2. always rest before you feel like you need to, especially if you’ve had particularly active days recently.

[cripplecharacters]

Hi there! I'm working on a modern supernatural story, and I've got a side character (the main character's best friend) who deals with chronic fatigue syndrome. He's a sweet, goofy, confident guy, and he has friends who are happy to change plans to accommodate him when he has flare-ups. They'll also help him out with chores or errands when he needs, with his consent. Naturally he gets bummed about his condition from time to time, but he's accepted that it's how he lives and with the help of therapy he's found ways to manage it. He also has plenty of hobbies and interests and grievances outside of his condition.

My question is this: I have a side-plot where the characters learn that a vampire has been feeding off him for weeks without his knowing, most likely using some kind of hypnotism. I'm wondering if the effects of consistent blood loss - fatigue, headaches, dizziness, etc - could reasonably be chalked up to a particularly bad CFS flare-up. Or would that be something where it's more likely he would notice the difference in severity of his symptoms and realize something else was wrong? Assuming the vampire can heal up any bite marks he leaves.

For the sake of clarity, he's had CFS most of his life and I'm taking care to avoid implying that it has anything to do with the vampire attacks. I'm just wondering if his symptoms would help hide the feedings or not.

Thank you!

The short answer: absolutely yes, this seems like it could be chalked up to a bad flare-up.

The long answer: I'm going to use the CDC's description of CFS/ME to lay out pretty exactly why it would work for both you and anyone wondering why exactly it would work.

A list of symptoms from the CDC has 3 core and 2 that you only need 1 out of 2 symptoms to have CFS.

Core: Lowered ability to do usual activities due to fatigue [that is not relieved by sleep/rest] that wouldn't have been an issue before illness

Core: Post-exertional malaise (PEM), which is a worsening of symptoms after physical or mental activity that wouldn't have been an issue before illness. Often described as a 'crash' and can include feeling dizzy, having difficulty thinking, headaches, or feeling ill. It can take days, months, or longer to recover from a crash and it's hard to predict how long a crash will last or what will cause it.

Core: Sleeping problesms; even a full night's sleep doesn't help symptoms much and might not help at all. Might have trouble falling or staying asleep.

Other: Problems with thinking and memory, like 'brain fog' or slowed thinking or trouble remembering things or paying attention.

Other: Orthostatic intolerance, meaning that symptoms can get worse while standing up. This can make people feel lightheaded, dizzy, weak or even faint.

I've bolded the symptoms on the list that match your stated symptoms of vampiric blood loss: "fatigue, headaches, dizziness, etc." and as you can see they match up pretty exactly!

Your character could perhaps do something that required a decent amount of mental or physical extertion, and perhaps it did or didn't cause a crash but at around the same time the vampire could have started to feed off of him. This might seem to prolong the 'crash' and your character might not think twice about it, just realize that they're feeling pretty miserable in a way not unknown to them.

I hope this helped!

PS, I really enjoy modern supernatural stories, and if you ever feel like sharing it I'd love to read this.

— Mod Sparrow

[myalgicencephalomyelitiscfstom]

An informative article on ME and post-exertional malaise [PEM] by the Norwegian science news site forskning.no has now been translated into English

Starts off as a case history but includes some comments from experts. —- What's extra frustrating is that it doesn't matter if she is doing enjoyable things or chores.

“People wonder why you can’t focus on things you like, so they can give you a surplus of energy. But the consequences are just as great when I visit a friend as when I go to a doctor's appointment,” she says. —-

---

Extract:

Pacing often involves measures to conserve energy, such as using assistive devices and avoiding unnecessary activity. It is also important to spread activities throughout the day with enough breaks in between.

'Any measure that can prevent a worsening of symptoms will not only stabilise the condition but also reduce discomfort and improve the patient's quality of life,' according to the guidelines from the Norwegian Directorate of Health.

---

---

“A characteristic feature of PEM is that the reaction to activity is often delayed. It can come several hours after the activity itself. Often, the reaction does not fully set in until the next day. Additionally, the amount of energy you have at your disposal can vary from day to day.”

---

“Cheering doesn't help Sommerfelt believes part of the problem is that PEM is often completely invisible to others.

“During an activity, it's not possible for others to notice that someone has gone over their limit," he says.

And when the crash comes, perhaps the next day, no one notices that the person is in bed and feeling terribly unwell.

Many ME/CFS patients have expressed that they wish other people could understand how profoundly ill they become. Cotton would like people to understand that cheering them on doesn't help. We are so used to thinking that it is healthy and positive to push ourselves. We cheer and motivate each other to keep going. But for people with PEM, the effect can be the exact opposite, Cotton believes.

“Pushing, persuading, and cheering – come on, you can do this, just a little more – is one of the most dangerous things you can do. By exceeding our tolerance limit over time, we risk long-term deterioration,” she says.

“Instead, we need those around us to encourage us to rest and take breaks. We need to hear them say: 'Sit down, put on sunglasses, go and rest for fifteen minutes!' And then you can come back so we can be together again afterwards," she says.”

[pandemic-info]

"Dianna is in bed and NOT sleeping. She has to close her eyes to avoid crashing. The Live Stream is not frozen, Dianna can not move much at all which is true in the life of someone with severe Long COVID or ME/CFS."

https://www.youtube.com/live/v8HWt9g4L0k?si=zELyFNo9d3E_iPY3&t=15306

... This is so utterly fucked. I'm so sorry this happened to her and anyone else suffering this disease that so many are just ignoring.

[perplexingluciddreams]

General ramble update:

ME/CFS crash is the most shittest shitty thing ever to exist. and makes sensory so bad with the sweating and sweating and the temperature dysregulation and the pain and the flushing hot hot face ears neck chest bad angry bad.

and then can't properly regulate sensory OR emotional because swing is make sore and more tired and more flush face ears neck chest.

and in a weird weather point where my usual hoodie makes too warm and sweaty (Worst Bad Sensory Ever), but arms is cold with only t-shirt no hoodie...

AND can't do physio walking because of crash. i thought it got better for a day or two, then did too much (mostly swing), now it is worse than the first part of the crash.

fucking hate ME/CFS it is the cruelest most horrible disease and i so so fucking wish i didn't have it

Also, AFOs still give problems (so can't even wear at this point). we try to contact orthotics people, but honestly i don't know if they can do much different at this point. i don't know if they could edit the ones i have to be wear-able, and if they can't then i really don't want to go through the process of getting another pair made, just for it to not work (and have to struggle with disappointment All Over Again).

i know i said before positive things about these AFOs, but that is my usual mess up of following scripts (copy/borrow words from others) before i even know my own feelings. i mix up anxiety and apprehension and not-sure-yet feelings with excited, because they are all "high" feelings. like buzzy and tense and energy. similar body feeling, maybe? then it is only a while later when i actually process my own body feelings, both for emotions (like anxious and disappointed) and physical sensations (like the pressure-pain from AFOs). it is only then i can say accurate things about the subject. this applies to any subject for me.

and Mum and Dad ordered a recliner chair for me, to put my Recliner Support System (from Special Tomato) on. when the chair comes they will set it all up, then at some point i will try it. but i will learn from my mistakes with speaking too soon on AFOs, and wait a while until i process, then update on that.

i think i am getting very very gradually slower. definitely having more semi-stuck moments where i can still move my body but can't transition task - or can't even know what i am supposed to do next. it is taking me longer and longer each toilet trip, i get stuck sitting on the toilet and between each step. it is affecting all my movements, but i try not to compare the walking part too much since there is other factors in that.

i want to write much more about regression and (highly suspected) catatonia stuff. i have a lot to say.

more mood stuff like getting easily "worked up" and aggression, and more getting close to meltdown easily, more hit self without control when i get only a tiny bit upset. but that is also part of ME/CFS crash for me, so i will not judge that until i have longer time to compare it.

also mentally everything is just hard. (which is also partial explanation for the quick aggression and mood shit). i "clock out" or "shut off" most of the time, because i simply don't have the time, ability, energy, to even think about everything that is happening/has happened to me. whether due to health shit, past trauma, regression/decline... it is all too much. brain loud. and loud = takes more energy. so, i can't.

this post seems overall quite negative, i think. but that is just my mental place recently. it is not always quite this bad internally for me. but when it is bad, i can't pull myself out of it, i don't have that ability, i can't regulate like that. only suppress and ignore and avoid, in hopes of avoiding meltdowns. my only hope is swing swing swing, music, watch things, and shut off clock out brain. don't let myself think or feel or remember the reality. just live in the safe parts of my brain's inside world.

hopefully i will have more positive feeling soon, and maybe happier things to share. although it is important for me to share the shit stuff too, it gets out of my brain a bit this way, relieve some pressure. i just wish i could get more out (of past things and memories, mostly. that is what makes the most noise in my head).

at least i have sensory galaxy light projector, Downton Abbey, sudoku, and safe music playlist (called "fills brain just right"). 💚

[psychiatryemotionalhealth]

How to Manage Chronic Fatigue?

We’ve all had those days when we just can’t seem to shake off the exhaustion. But what if that “tired” feeling never really goes away? If your fatigue is constant, overwhelming, and affecting your daily life, you might be dealing with chronic fatigue, and no, you’re not imagining it.

Let’s break it down, human-to-human, and figure out how to manage it so you can start feeling like yourself again.

 What Exactly Is Chronic Fatigue?

Chronic fatigue is a long-term feeling of tiredness that doesn’t go away with rest. It’s different from simply being tired after a rough week or a late night Netflix binge.

Now, here’s the twist:Chronic fatigue is not the same as Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME). While they share symptoms, CFS/ME has a specific set of diagnostic criteria and often includes more severe symptoms like post-exertional malaise.

Regardless of the cause, managing the symptoms early can seriously improve your quality of life. So let’s dive into how you can do just that.

Understanding What’s Causing Your Fatigue

Here’s the deal: Chronic fatigue can have many faces.

Common Culprits:

Medical conditions like thyroid disorders, anemia, diabetes, or autoimmune diseases.

Mental health issues such as depression or anxiety (yep, mental stress is exhausting).

Lifestyle factors like poor sleep hygiene, lack of exercise, or you guessed it stress overload.

When should you see a doctor?If fatigue lasts more than six months or keeps you from doing what you love, it’s time for a proper medical evaluation. The first step in treatment is ruling out any underlying issues.

Medical Management: Let’s Get Professional

Once you’ve seen a doctor, you can start a plan that fits your specific needs.

What This Might Include:

Diagnostic tests to uncover hidden issues.

Medications to help with sleep, mood, or pain—like antidepressants or sleep aids.

Referrals to specialists such as rheumatologists or neurologists if needed.

Pro tip: Don’t try to push through fatigue like a superhero. Get help early—your body will thank you.

Lifestyle Modifications That Actually Work

You can’t medicate your way out of poor sleep and high stress. Lifestyle tweaks matter.

 Sleep Hygiene

Keep a regular sleep schedule (even on weekends!).

Make your room a sleep haven cool, dark, and quiet.

Address sleep issues like sleep apnea or insomnia with your doctor.

 Nutrition

Eat balanced meals think lean proteins, whole grains, and plenty of veggies.

Avoid the sugar-highs and caffeine crashes.

Hydrate like it’s your new hobby.

 Physical Activity

Start with gentle exercise: walking, yoga, or stretching.

Use the “pacing” method do a little, rest, repeat.

Listen to your body to avoid post-exertional malaise (yes, it’s a real thing).

 Stress Management

Try relaxation techniques like meditation, deep breathing, or journaling.

Cognitive Behavioral Therapy (CBT) can help reframe unhelpful thought patterns.

Set boundaries. It’s okay to say “no” to things that drain you.

Mastering Daily Energy Management

Think of your energy like a phone battery it needs to be recharged and used wisely.

 Pacing Techniques

Break big tasks into bite-sized pieces.

Use an activity diary to spot energy zappers.

Schedule rest breaks yes, even if you’re “just doing housework.”

 Tools That Help

Use planners, alarms, or phone reminders to stay on track.

Try assistive tools if needed, like ergonomic chairs or standing desks.

Modify your space to make daily tasks easier.

Don’t Go It Alone: Social and Emotional Support

Fatigue can feel isolating but you’re not alone.

Talk to your friends and family about how you’re feeling.

Join support groups (online or local). Sharing stories helps.

Find people who get it it makes a world of difference.

Thinking Long-Term: Adapting Without Giving Up

Life doesn’t stop, but it can pivot.

Reframe your goals to match your current capacity.

Track your symptoms some days will be better than others.

Advocate for workplace or school accommodations if needed. Your health comes first.

Final Thoughts: You’ve Got This

Managing chronic fatigue isn’t about finding a magic pill it’s about understanding your body, making small adjustments, and being kind to yourself.

Stay consistent, stay curious, and if things get worse, don’t hesitate to loop back in with your healthcare provider. At Psychiatry Services 4U, we’re here to walk this journey with you every step of the way.

[dysfunkt1on]

This morning I used the last of a bag of some vanilla hazelnut ground coffee I had and later in the afternoon got to replace it with a bag of salted caramel I had on hand but I'm just switching back to the other flavor since for some reason the "salted" note tastes like that shitty fake menthol flavor you get in "ice" vapes and I'm pretty sure I had a bad reaction to it since later my neuropathy was raging bad, in fact it may have even been the food last night as I was using garlic with the water and citric acid added which may have been bad for me. I had some tonight in some corn and peas and feel weird so I'm betting it was largely the new garlic and specifically the citric acid additive that's not doing me well. Tomorrow I have to work too and the beginning of my first full week back and I am not looking forward to it feeling the way I am right now. I need to mask very well around my normal healthy coworkers and it's extremely exhausting. Hearing all of the things they do in a day never mind a week is always mind blowing. Every day I am worried about sudden CFS regressions from just about anything including simply trying new things with food and sometimes the dumbest thing like a small additive can be a trigger for making me feel worse. In this case I might actually and will be honestly avoiding all citric acid from now on. I got driven to the grocery store before and I appreciate a family member doing that for me when I can't walk to it very well. On the way home sitting in their warm car and listening to Fell on Black Days on the radio playing at the time was a comforting experience. I really go off those small comforting moments when everything like right now is so uncertain. I also noticed next door to the grocery store a new buffet is replacing the old one that's been gone since around 2017 now. I remember the last time I ate in the old place and miss it a lot. I liked the aesthetic of it and how it had a really natural look inside with this big decorative tree when you came in and one of those fake waterfall things you sometimes find in chinese restaurants. The traditional art around the place was also really refreshing and overall it didn't have that super ugly white and chrome everything modern look to it. There was a little station you can make your own plate of food at too and the chef person would throw it on the grill for you. Whenever I went in he would always make me extra sushi too which I was almost embarrassed by. The new place coming in is also a buffet but will be a much more expensive seafood one which I can't wait to try anyways despite my sadness over the old one. The inside looks like it's been completely changed in style to something much more ugly and cafeteria looking. The person who drove me said someone was having a birthday in the family and speaking of buffets we might go to some all you can order japanese and sushi one which I am also excited about or pray to be soon hoping I didn't just crash myself in some way that makes me feel like death for the rest of the week. Speaking of food today I actually got the rice I ordered a couple 20 pound bags of in and to my surprise I was given a free third bag putting me at 60 pounds of basmati. That's gonna last me a while and make many rice and veggie dishes to come! Or fish if I give myself a little treat and add that but usually it's just cauliflower, bean sprouts, and peas. I don't really make anything else since it's the safest food I got and if I want variety I tend to just do a variation of it. Though I'm not making dinner tomorrow or the next day as I'm desperate need of a good fast and I'm feeling crashy. More food is just more energy for my body to spend breaking it down.I tend to just look forward to the nights I add something extra to it and the nights where I get to go out with some family to eat now and then with what is left of us. I don't know how I'll feel tomorrow but I can only pray it's better than this.

[yourgamemasterthewhiterabbit]

The great regular sleep experiment of 2024 part "Everything is pain"

Uh so listen, listen, imagine what your body would feel like after you did a *surprise!* cross-fix workout, a really big long one, with no warning the day before, maybe pushed yourself till you almost puked...

That's what my body feels like on most days for no reason.

Today my body feels like day seven of doing that for a week.

You start to have thoughts like "is this actually killing me, this can't be how it's supposed to work, why did I start this"... because exercise should be worked up to slowly and should have long enough recovery periods in between otherwise you ARE just damaging your body...

Only for me, with cfs and whatever the fuck else, my only crime was "trying to get regular sleep around my cat screaming and also maybe keep up on chores and rearrange some boxes maybe eventually."

And this is my punishment.

Complete with feeling hot and so so so so hungry...

It's not that I can't occasionally push myself and get a bit extra done... It's that it shouldn't be this grueling or unsustainable to do normal things like sleep and get your dished done.

I shouldn't need to carefully manipulate every aspect of my sleep, diet and activity in great detail just to avoid catastrophic body failure. That kind of daily micromanaging is exhausting.

I didn't eat enough during my morning slot because it was only 5 hours, and I don't get particularly peppy in that time, but the problem is that means 13 hours a day in a row where it becomes easy to accidentally under eat or not eat because of 4-5-4. I had a plum with honey on toast crackers... And my high caloric tea, but like... not enough.

If I do get used to cooking and eating a whole meal during that slot, it really does save me from the "wakes up in the middle of the night with stomach growling and feeling of crashing blood sugar" problem that often breaks my sleep schedule.

I'm go eat.

Slept 10-2 though, that part has been so successful. Comparatively.

[compassionmattersmost]

Navigating ME/CFS: The Chronic Fatigue Syndrome Journey

Cultivating Resilience, Self-Compassion, and Mindful Living Through Pacing Living well with Chronic Fatigue Syndrome (ME/CFS) involves embracing mindful pacing and staying within your energy envelope. Prioritize achievable tasks and incorporate regular self-care. Aligning with ME/CFS good practices, avoiding overexertion to prevent crashes, and maintaining a consistent sleep schedule are…

[crackednailsandsplitends]

My Battle with ME: When Fatigue Affects My Vision

My Battle with ME: When Fatigue Affects My Vision

Living with myalgic encephalomyelitis (ME/CFS) has presented me with a variety of challenges, one of the most difficult being the impact on my vision. As with fatigue, a common symptom of ME/CFS, sets in, I often find that my vision becomes blurry or hazy, making it difficult to focus on tasks or even just see clearly. This has been frustrating and sometimes overwhelming, as it adds an extra layer of difficulty to my daily life.

At times, the fatigue from ME/CFS can be so overwhelming that it feels like my eyes are struggling to focus, causing blurred vision or even double vision. This not only makes simple tasks like reading or watching TV difficult, but it can also be quite disorienting and frustrating.

In addition to the physical aspect of my vision being affected by fatigue, a symptom of ME/CFS, I've also noticed that my mental clarity and ability to concentrate on visual tasks are diminished when I'm particularly tired. This can make it hard to process information quickly or make decisions based on visual cues.

The connection between fatigue and vision issues in ME/CFS is not fully understood, but it is believed that the strain of dealing with constant fatigue (mind and body fatigue) can affect the eyes and how they function. Additionally, the brain fog and cognitive difficulties that accompany ME/CFS can further exacerbate vision problems, making it even harder to see clearly.

The Onset of Eye Fatigue

Over time, I’ve noticed a significant deterioration. It's not just the widespread pain and rigidity spasms associated with ME/CFS (Myalgic Encephalomyelitis) - there are many other symptoms. There are days when fatigue overwhelms me so much to the point where my eyes feel unbearably heavy and tired. They start to roll back, pleading for what feels like a shutdown, even at midday –any time of the day.

But, sleeping during daylight hours isn't an option because it disrupts my evening sleep pattern which is critical for my overall health with ME/CFS, further complicating sleep disturbances.

Struggling Against Daytime Naps

This self-set rule of not sleeping during daylight often feels like a huge battle, especially when my body shuts down and my eyes are rolling back. Despite being determined to maintain good sleep health by avoiding daytime naps, sometimes it's just impossible. Sometimes, I find myself succumbing to fatigue (a common symptom of ME/CFS).

No matter how strong-willed I am, my broken body has its own agenda; sometimes I simply have no choice but to sleep, a testament to the relentless fatigue associated with ME/CFS.

Blurred Vision: An Unexpected Impact

Another issue that I've grappled with is blurred vision. Apart from regular eye issues like needing glasses for sight correction, what's concerning now is how rapidly my eyesight seems to get worse, a symptom that's increasingly common with ME/CFS.

To add another layer of complexity, double vision also torments me sporadically, specifically in my right eye accompanied by a deep dull ache - pain almost indescribable in words, highlighting the multifaceted symptoms of ME/CFS.

Post-exertional malaise (PEM), also known as a 'crash’

Post-exertional malaise (PEM) episodes are a debilitating symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). When I experience a PEM episode (aka a 'crash'), it feels like a sudden crash in my energy level and health, which drastically worsens my symptoms. It can be triggered by even minor physical or mental exertion, such as walking a short distance, having a bath or a brief conversation. During a PEM episode, my sensory functions are significantly affected, including my eyesight, which becomes blurry and difficult to focus. These PEM episodes can last for days or even weeks, leaving me feeling exhausted and unable to participate in daily life.

PEM is a debilitating and long-lasting symptom that significantly impacts our daily functioning.

Seeking Medical Insight and Reassurance

I visited the optician twice within a few months due to my blurred vision. Initially, I was told my vision issues were just normal effects of ageing (because I am over 40), but a subsequent visit to different opticians offered more insight. This time, the optician acknowledged that my symptoms would be related to ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a condition I hadn't considered in my diagnosis journey.

Upon expressing my concerns about ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) potentially causing my deteriorating eye health, the optician surprisingly agreed, mentioning his wife also battles the condition. He reassured me that eye fatigue could indeed be a symptom of ME/CFS, leaving me feeling a mix of reassurance and frustration, knowing my eyesight might not improve.

Final thoughts

To manage the visual symptoms of ME/CFS, I've adopted several coping strategies, including taking regular breaks to rest my eyes, which helps lessen the strain and improve my vision. Adjusting my surroundings for better lighting is another change I've made to ease the symptoms and make living with chronic fatigue syndrome a bit more bearable.

Navigating life with myalgic encephalomyelitis (ME/CFS) is a constant battle, facing new, unwelcome symptoms like persistent fatigue and blurred vision. Each day is about learning to adapt and finding ways to move forward despite the challenges of this chronic illness.

About me

I am a married mother of four children, in my mid 40's. I run a small business and enjoy writing, which is why I blog. My blog focuses on my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia.

[captain-crackship]

I have AuDHD (childhood diagnoses) and C-PTSD, and am suspected to have bipolar and ME-CFS. I also have major vision loss due to nerve damage in both eyes. Had gallbladder removed due to years of frequent attacks and can't drink because my liver hates me.

Growing up, I was prone to having meltdowns and couldn't focus or stay still in class. One of the weird ways my autism presents itself is that I would LARP with myself, or have full conversations with myself. I had imaginary friends up until almost high school and had difficulty separating fiction from reality.

I do still LARP and talk to myself but it's not as bad as it was and I try to keep it contained to an isolated space. I haven't had a meltdown in maybe 4 years and am more aware of the warning signs and how to avoid it. I get very easily overstimulated by noise and touch which is why it should be a federal crime to blast the fucking bass out of your speakers imho fuck you if you do that and don't like certain fabrics because of the texture. When it comes to food, texture is just as important to me as flavor. I'm Southern, I gotta have both.

I have difficulty focusing and staying on task or even getting tasks started. Thanks, executive dysfunction!

C-PTSD: I freeze, have panic attacks, have frequent recurring nightmares, and there are nights where I'll cry myself to sleep, cry in my sleep, or wake up crying.

Suspected bipolar: Everyone on the maternal side of my family has it, my mother has it, and both of my sisters have it. I have the symptoms but have not gone to get a formal diagnosis (I really should). HRT has helped to stabilize my mood so I'm not having suicidally depressive crashes like I was before starting and I'm not stupidly manic either. I'm not numb anymore. I'm not happy yet, but I'm way less sad.

Suspected ME-CFS: Again, this is an issue on the maternal side of my family and it's passed down matrilineally, meaning all the women in my family have it. Guess who was assigned female at birth and checks all the boxes?

Vision loss: Near-total blindness in left eye, partial blindness in right. Diagnosed at 16 with nerve damage in both eyes, vision loss has progressed over the course of my lifetime.

Gallbladder attacks: Starting from when I was 17, I began having frequent and severe gallbladder attacks that had me in and out of the hospital for several years. Doctors did nothing to help me, turned me away, accused me of seeking drugs, and despite two negative tests tried to tell me I was pregnant. I finally had it removed in April last year after it had gone septic.

And thanks to my sperm donor, my liver doesn't process medication or alcohol correctly so I can't drink. I used to until having my surgery.

Do any of you have disabilities either physical or mental?

How do you think it has effected your life? If at all?

What would you say has helped you the most with getting through it/working with it?

You don't have to answer these if you don't want to but I was just curious.

[iplaywithstring]

hi i hope this is okay to ask, i been recently diagnosed with cfs (past thursday) and my doctor didnt offer much help apart from recommending a change in my diet, exercise and giving me magnesium?

i was reading your posts and i was wondering what "pacing' means? and how do i do that? i feel very new to all this, very very tired (most days i am so exhausted that getting up and showering is very hard) and a bit scared tbh

i hope you are doing well! and if this as is out of place please ignore it! thanks in advance!

This is not out of place at all! These sorts of questions are super important, and unless you've got one of a handful of doctors, you're not going to get the information you need.

(this is going to be long. I'm wordy. I'll try to organize it into sections so you can skim for what you need).

First off, for the advice you did get:

Changing diet: some people with ME/CFS develop new or worse food sensitivities/intolerance. Personally, my digestive system turned into a bit of a mess and I can't eat wheat anymore without regrets. On top of that, a lot of people find that some foods are inflammatory (grains, sugar, dairy especially) and that can make symptoms feel worse. It's a bit of a trial and error thing to figure out, but for me, cutting out wheat, limiting other grains and trying to avoid sugar are worth the hassle.

Magnesium: can help with sleep and with joint pain, but personally I didn't notice much of a difference. That goes for almost any supplement. I highly recommend taking vit D regularly, but that's because most people outside of the equator are low on vit D. Some people have deficiencies because of digestive issues (I'm prone to anemia myself) or find supplementing certain things helpful, but it's really an individual thing. Taking magnesium can't really hurt (unless it's too much), so it's not a bad thing to try, just don't expect a cure.

Exercise: what sort of exercise did your doctor tell you to do? In general, exercise (in the sense of doing activity to raise your hear trate for a specified time and repeating at regular intervals regardless of how you're feeling at the time) is a bad idea. ME/CFS comes with something called Post-Exertional Malaise - PEM - which means that after exertion (emotional, physical or mental), there's a likelihood symptoms will get worse. Raising your heart rate, pushing yourself, and strenuous physical activity is risky. PEM usually doesn't kick in until after the activity is finished (once your body is back to baseline) and sometimes won't show up until a day after you've over done it. Really bad flare ups/PEM episodes are often called crashes (because it feels like you've been hit by a truck).

That said, for some people with mild or moderate symptoms (myself included), a certain amount of activity is good for things like muscle and joint pain. For me that means yoga and slow walking. I avoid getting my heart rate too far above 100 (110 seems to be ok, 120 usually comes with regrets). For people with ME/CFS, things like making the bed, standing to prepare a meal, and sometimes even sitting upright all count as exercise - we can't take anything our body does for granted. When I talk about "active time" that means time doing anything that takes more effort than laying in bed reading.

Which brings us to your question about pacing!

This is a good primer on pacing

Basically it's like fishing in Stardew Valley (hear me out! This is great if you've played it!) You have an energy envelope - that's the amount of activity you can do that feels good and doesn't cause a flare up. That's the bar in the fishing UI. You are the fish. In Stardew, you have to move the bar to keep it in line with the fish, with pacing, you have to keep yourself within the boundary of the bar. The bar will not be the same size or in the same place every day, you have to learn how to read yourself and your symptoms to understand what's going on and what sort of limits you need for the day.

For example, early on in my illness, I had constant tinnitus. It's a fairly common symptom, so neither myself or my doctor thought much of it. It would come and go seemingly at random. It took me years to realize that the tinnitus is a sign for me that I'm reaching the end of my energy envelope! Along with noise/light sensitivity and nausea, that's my early warning system. If I'm dealing with any of those things, I know I need to take it easy and slow down or I risk PEM. This is when I get off my feet as much as possible and try to keep my heart rate low.

The second layer of symptoms for me include temperature regulation - if I'm cold but no one else is, I've probably already triggered PEM, so I need to plan for symptom management for the next couple of days (which might mean cancelling plans). This is when I stop - recline with my feet up if possible, blankets and heating pad, lower sensory input and such. Other things I notice at this stage include brain fog (difficulty following conversations, memory recall problems, trouble concentrating) and dizziness. Basically I'm starting to feel ill - almost like coming down with the flu.

After that comes the actual PEM/crash, which is all of the above, plus pain, weakness, chills, almost feeling like I have the flu. It's awful. When in a crash, I stay in bed (or laying on the couch) as much as possible. Audio books or podcasts instead of watching anything. Keep sensory input and activity as limited as possible for as long as reasonably possible.

Learning to recognize the early signs of the boundaries of your energy is hard to do. There are SO MANY factors - it's not just the physical things you're doing, but temperature, sensory input, emotional state, etc. On a day when I'm relaxed and content and life is good I have a bigger envelope than on a day when everything is the same but I'm worried about something. Having a chat with a friend in a coffee shop uses up a lot more energy than having the same chat on my couch.

It's also tricky because things like cortisol and adrenaline - normal stress hormones that everyone releases in lots of situations - can mask symptoms and make it harder to realize how much a situation is taking out of you. For a long time I thought I was doing great and then ended up with PEM the next day because I went past my limit but adrenaline got me through. Recognizing signs of an adrenaline surge (burst of energy, feeling restless, talking faster etc.) and responding appropriately is important. For me this means that after being in class sometimes I'd come home and go right to bed, even if I felt like I could make supper and hang out with my family.

I use an activity tracking watch to help me manage all of this. Mine is a Garmin Lilly and it has a wonderful "body battery" tracker. I don't know what measurements go into it, but for me, it means if I'm above 80 I'm probably good, if I'm below 60 I need to watch it, and once I'm at 40 I better lay down. It also tracks "intensity minutes" (activity + elevated heart rate) - it wants me to have 150 a week, but I know if I've had any, I need to slow down and pull back on my activity a bit. For me, having the technology to help keep track of things is completely worth it.

Also, you mentioned showering - showering is the worst. It is hard for a lot of people with ME/CFS because it has so many components - standing/being upright (shower chairs help!), temperature change (temperature regulation is a big deal for a lot of us), activity (washing can get your heart rate up) and has a lot of sensory input (noise, heat, tactile sensations all add up). It's ok if you need to shower less and find other ways to keep yourself clean (sponge bath, washing your hair in the sink, whatever).

What I recommend is to rest as completely as reasonable for as many days as you can - low sensory input, sleeping and reclining, not walking around too much. If you can track your hear rate, try to keep it below 100 (unless you have POTS, in which case that will be very hard!) and then start to see how different activities affect you. Keeping track of your heart rate is a good first step if you can, but also pay attention to any sensory sensitivity, nausea or temperature issues. If you notice something that wasn't there when you were resting, pull back a bit. It's SO HARD and feels so limiting at first, but as you start to understand the signs of exertion, you can learn what triggers it and what is manageable.

For example, I've got OI and PH - orthostatic intolerance and postural hypotension. That means that I have difficulty changing positions (going from sitting to standing) and difficulty staying upright. However, by tracking my heart rate and my symptoms, I know that on good days, my OI only kicks in if I'm standing still. So I can walk (slowly, on flat ground) without issues, but standing in line at the grocery store will cause problems. Learning how to recognize that means I can go to the grocery store again, I just need someone to come with me to handle the checkout (usually while I browse the plants).

this is very long. I'll stop typing now, I hope it's helpful!

[tricky-pockets]

I'm never sure where I fit in with regards to disability. Leaving aside mental illness, I probably (?) have chronic fatigue syndrome - and I say 'probably' because I struggle so much to describe or quantify my symptoms.

For a while, if I climbed a flight of stairs I'd end up crashed out asleep in the middle of the day and wake up with all my muscles hurting. I had brain fog to where I'd sometimes struggle to count by 10's. And it got better, for weeks at a time, then worse again, and so on and so on.

It's been over a year and the worst of it seems to be done? Like it might be getting better? But I might just be in between bad spells.

I cut down physical activity severely to avoid the crashes and got in the habit of not pushing myself. So I don't know if it's gotten any better or if I've just gotten better at rationing.

I still feel weak, but that might be muscle deconditioning as a result of no exercise. I sometimes feel foggy, but that might be any number of things. And the ADHD makes it hard to see a broad arc over a long time, and the anxiety produces its own physical symptoms and makes me second-guess the rest.

I have no fucking idea where I'm at or what things I'm able to do, and I just. how do I deal. I'm honestly considering trying to kick my own ass with a workout, but if I crash afterward that'll mean that the CFS really is still there and god I don't want it to be.

[transfemlogan]

I do not like using the term "babying" when referring to disabilities & disabled people, but I do not know the correct word to use right now. Please keep that in mind while reading this.

Implying that we need 2 stop "toxic pushing" bcuz it's "causing thomas' physical condition" is... stupid. Thomas is a grown ass man. We do not need to "baby" him. If "toxic pushing" is triggering his disability, then he needs 2 learn how 2 cope & handle his symptoms & stress. (Probably 1 of the reasons he avoids criticism).

HOWEVER, I dislike the idea that he cant look at criticism because he has TMJ. Like... that's... WEIRD! That's also not how life works!

The only example that I can come up with are my own triggers in regards 2 my disability, CFS/ME. Excerise can cause crashes, but I can't just... never excerise ever. That's unrealistic. I need to learn how to excerise in a way that will help me and not trigger a crash. I cannot avoid all of my triggers & I don't expect to. I am going to experience them, that's life, but I can work towards handling them & taking care of myself.

This idea is just... so odd.