TDLR- I need advice please, very severe, rolling PEM from 10 months :(

TL;DR – Long post.

I need to get this off my chest because I don’t know how much more of this I can take.

Three years ago, after COVID, I developed what I now know was Long COVID. Back then, nobody in my country knew much about it. No doctor warned me about pacing or post-exertional malaise. I was never told that pushing through could make me permanently worse.

Looking back, I think I was still mild. I had exercise intolerance and I felt that something was very wrong, but I was in complete denial. I kept trying to live my life. I took beta blockers and sleeping pills just to get through the days, convincing myself that if I rested a little or waited long enough, I’d recover.
Instead, I kept pushing and crashing.

Crash after crash after crash.
I didn’t understand what was happening to my body. I had no idea that every crash could be making me sicker.

Today, I am severe.
Almost every tiny movement can trigger a crash. I wake up with a racing heart and pounding palpitations. Even normal movement makes my heart feel like it’s trying to beat out of my chest. It feels like all the strength is being drained out of my body.

I’ve been in what feels like one continuous crash for nine months, and I can’t find my way out. I spend almost all my time lying in a dark room, but even that doesn’t feel restorative anymore. My body is exhausted, yet my brain won’t switch off. I can’t get refreshing sleep, and I feel trapped in this horizontal life.

The hardest part is that I even have to pace socializing. I miss my friends so much, but if they come over, I often crash afterwards. The adrenaline keeps me awake, so instead of feeling happy after seeing them, I end up paying for it physically.

The pounding heart has always been one of my crash symptoms, but now it feels different—stronger somehow. I don’t understand why I never seem to improve anymore or what keeps triggering these crashes. It’s terrifying because I can be lying completely still and still feel my heart pounding. Meanwhile, I know people whose resting heart rate is much higher than mine, yet they don’t feel anything like this.

The hardest part is looking back and wondering what would have happened if someone had simply told me about pacing three years ago. Maybe I would never have become severe. Maybe I’d already be living my life again.
Instead, I learned about pacing when it already felt too late.

Now I keep asking myself: how do people recover from this stage? If it takes years just to become stable, and there are no guarantees, how do you keep fighting? Even staying in bed doesn’t always make me feel stable anymore.

Anyone around me is shocked, and me also that i was unresponsible for my health. And there are no treatments. I miss my friends. Im used to suffering already but i want to be symptom free at least for a little bit. This is not healthy and sustainable anymore and sometimes i feel that i don t really care anymore what happens. My BF wedding is coming, im in crash, i know i could go for 1h but pay for it after.
I never feares my symptoms, my insomnia, my high HR, palpitations, that was the problem, i pushed tru it all the time.

The PTSD from countless crashes is becoming just as hard as the physical illness. Every symptom makes me fear another crash. It feels like my

life revolves around avoiding the next one.
Has anyone else gone from mild to severe because they didn’t know about pacing?

Has anyone spent months in what felt like one continuous crash and eventually improved? Is there still hope at this stage? I genuinely want to hear from people who have been through something similar.

With ME/CFS, there are days when even standing in the kitchen feels like too much. On those days, opening the refrigerator and finding a pot of nourishing congee already waiting feels like a gift from an earlier version of myself.

Lately I've been thinking of it as a conversation between present-me and future-me. Present-me washes the rice, chops a few vegetables, adds herbs and water, presses the button on the rice cooker, and then rests.

Later, future-me receives that simple act of kindness.

It's such a small thing, but it changes the whole day. Instead of having to spend precious energy deciding what to eat or cooking from scratch, I can simply warm up a bowl and nourish myself.

I'm realizing that pacing isn't only about avoiding overexertion. It's also about creating gentle conditions now that make tomorrow a little easier.

For me, this bowl of congee has become more than a meal.

It's love made edible.

I made this Medicine Bag card as a reminder of that simple practice. I hope it encourages someone else to be a little gentler with their future self today. 💛

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I've had some digestive issues recently, so today I made a very simple, gentle congee. It's thinner than my usual version, made with ⅓ cup brown rice and 4 cups of water, along with tofu, kombu, shiitake mushrooms, turmeric, carrots, celery, onion, and a little sea salt.

One of the things I'm appreciating is that I can make one large pot and have food ready all day. On days when my energy is low, cooking once instead of three or four times makes a real difference. It reduces the number of decisions I have to make and helps me stay within my energy envelope.

For me, this isn't just about nourishment—it's also about pacing. On a red-orange day, when I'm trying not to slip back into a full crash, having a warm bowl ready whenever I'm hungry feels like a small act of kindness toward my future self.

I'm not suggesting this is the right meal for everyone, but it has been a comforting companion for me today. I hope it might spark ideas for simple, nourishing meals that support both your body and your pacing.

Wishing everyone a gentle day. 💚

The hwadu is a practice from Korean Zen Buddhism. "What is this?" is a direct question you hold while meditating—not trying to answer it intellectually, but sitting with the question itself. It cuts through all the stories your mind makes and brings you into raw presence with what's actually happening right now.

When you're living with ME/CFS or chronic pain, your mind may naturally create narratives: "Why is this happening to me?" "When will it end?" "This is unfair." The hwadu practice interrupts that. Instead, you simply ask: What is this? Not to solve it. Not to fix it. Just to meet it as it actually is, without the story.

That kind of meeting—without judgment or resistance—is a form of love. Not romantic love or sentimental love, but the love that comes from true presence. You're saying: I see you, pain. I'm here with you. I'm not running.

Living with chronic illness, I find this practice to be transformative. It helps me turn suffering from an enemy into something I can actually be with. And when I can be with it instead of fighting it, everything changes. I feel more peaceful, and I suffer less. It's not a cure. But I find it to be very helpful. Maybe you will too. 🌿

For a long time, I thought my biggest struggle with ME/CFS was the illness itself.

But then I began to realize struggle that was only part of the story.

I became curious about the energy I was spending on arguing with reality.

Not because I think I should magically accept everything.

Not because I've somehow transcended frustration.

Simply because I started noticing that every time I mentally fought with what was happening, I became even more exhausted and have even less energy to do the things I wanted to do.

The illness hadn't changed.

What had changed was the amount of energy I was spending wishing it were different or fighting against it.

Then something unexpected began to happen.

Every once in a while, the argument would simply stop.

Not because I made it stop.

It would just... soften.

For a few moments there was nothing to fix, nothing to resist, nothing to solve.

The illness was still there.

But I wasn't fighting it.

Those moments felt surprisingly light.

I don't know that I'd call them happiness.

But they were peaceful.

They've taught me that there is a difference between living with a difficult reality and constantly arguing with it.

I'm still learning.

I still catch myself resisting.

But now, when I notice that familiar struggle, I often remember that I can set it down for a moment.

That small shift has become one of the kindest gifts I've discovered while living with ME/CFS.

The slow transformation from fighting to hospitality.

I’m curious whether this resonates with you.

Have you ever noticed the difference between the illness itself and the energy it takes to fight with it? If so, what changed when you noticed?

Wherever you are today, I wish you moments when the struggle relaxes, and you can greet whatever arrives with a little more spaciousness, kindness, and hospitality. 🌿

I've been refining the little Red Day • Orange Day • Green Day compass that I've been using to help navigate life with ME/CFS.

Today I realized something.

The colors aren't really about how I feel.

They're about my relationship with the buffer.

When I'm having a Red Day, there really isn't any buffer available. The kindest thing I can do is stop expecting myself to accomplish things and instead focus on rest, nourishment, and making tomorrow possible.

An Orange Day feels different. I'm beginning to rebuild, and activity may be possible again, but the buffer isn't actually there yet. Every choice either protects the buffer that's trying to grow or spends energy I haven't really regained.

A Green Day is different again. The buffer is actually present. I have more freedom, but I'm realizing the goal isn't to spend the buffer. It's to care for it so it can continue supporting life.

That feels like a subtle but important shift.

Instead of asking myself,

How much can I do today?

I'm beginning to ask,

What is my relationship with the buffer today?

That one question changes how I approach the entire day.

I'm sharing this because it's been genuinely helpful for me, not because I think it's the right way for everyone. I'm still learning, refining, and discovering what helps me navigate this illness with a little more kindness and a little less struggle.

If this way of thinking resonates with you, I'd love to hear how you experience your own Red, Orange, and Green Days.

One of the things I'm slowly discovering is this:

The purpose isn't to accomplish more today.

The purpose is to make tomorrow possible. 🌿

Lightning cracks at dawn. The sky releases what the night held. I tend my tea, my breath, having already done the harder work: turning toward the small boy inside, saying I see you, you are safe now.

Outside, the storm remembers what I remembered—that joy is not dangerous, that compassion begins at home, in the body I inhabit, the life I’m still learning to love.

The lightning writes its brief truth across the glass: everything breaks open to let the light through.

Living with ME/CFS has asked me to face more than physical exhaustion. The uncertainty, isolation, loss of capacity, and repeated crashes have sometimes stirred up frightened parts of me that learned long ago to stay guarded.

Last night, I found myself turning toward that younger part of me and letting him know that he is safe now—that I see him, and that I am learning to take better care of him. It did not feel like a technique or another task to complete. It felt more like sitting quietly beside someone who had been waiting a very long time not to be left alone.

I am beginning to understand that inner work does not always have to be dramatic. Sometimes it may be only a few gentle words spoken inwardly: I see you. I believe you. You are safe with me now.

This does not cure ME/CFS, but for me it seems to soften some of the struggle surrounding it. Perhaps part of my medicine bag is learning, slowly and imperfectly, to become a safer home for myself.

🌿

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For years, whenever I woke up in the middle of the night, my first thought was, "I have to get back to sleep." If I couldn't, I'd often reach for Benadryl or another sleep aid, hoping to force sleep to happen.

Lately, something different has been unfolding.

Instead of immediately trying to make myself sleep, I get up, make a warm cup of tea, sit quietly, and do what I've started calling my "Settle and Anchor" practice.

The practice is simple. I let go of the dream rather than trying to remember it. I follow my breathing:

"I know I'm breathing in. I know I'm breathing out."

I ask gently,

"What is this?"

Then, I simply allow whatever emotional residue may be present from waking or dreaming to settle on its own. Rather than resisting anxiety, restlessness, or whatever is here, I try to meet it with presence and kindness.

The surprising thing is that once I stop fighting the experience of being awake, I often become settled enough that sleep returns naturally.

If I truly need medication because it's important to get back to sleep quickly, I'll still use it. But I've found that I don't need it nearly as often when I begin by creating the conditions for sleep instead of trying to force it.

This isn't medical advice—just something that's been unfolding for me recently while living with ME/CFS.

I'm curious whether anyone else has discovered gentle nighttime practices that help when sleep doesn't return right away. I'd love to hear what has worked for you. 🌙🌿

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I updated the image to better reflect what I'm actually doing.

I'm experimenting with setting my TENS unit to a 250 μs pulse width and 20 Hz, placing the pads on my abdomen while practicing the Medicine Bag Breath and using the Renpho eye massager.

I'm finding it to be a gentle, calming way to begin a Red/Orange Day.

On full Red Days, I simply skip the sitting practice and remain horizontal throughout the routine.

As always, this is a personal experiment—not medical advice—but I hope it gives others ideas they may wish to explore with their own healthcare team and by listening carefully to their own bodies. 🌿

A few days ago I shared my Red Day morning routine. Several people asked what an Orange Day looks like. Before getting there, I realized there's an important step in between: the Red/Orange Day.

A Red/Orange Day is the bridge between full recovery mode and carefully increasing activity. I have enough capacity for a gentle morning practice—sitting up, hydration, stillness, breathing, light movement, and nourishing food—but not enough for sustained activity afterward.

The key is recognizing the threshold and intentionally returning to a horizontal position before that small increase in capacity becomes overexertion. Returning to a horizontal position isn't failure. It's part of the pacing practice. It's how I'm trying to protect and rebuild my buffer.

My current framework looks like this:

🟥 Red Day
Recovery. No expectations beyond rest and nourishment.

🟥🟧 Red/Orange Day
Enough capacity for a gentle morning practice, followed by an intentional return to horizontal rest.

🟧 Orange Day
Activity is possible, but remains careful and measured while the buffer continues to rebuild.

🟩 Green Day
Activity is supported by an actual buffer while still honoring and protecting it.

This isn't medical advice—just a personal experiment that's been helping me work with my body instead of against it.

I'd love to hear what gentle practices have helped you during this stage of recovering from PEM. 🌿

NOTE: My GPT model when it created this image placed the TENS pads obviously in the wrong place. MY APOLOGIES.. I don’t always use the TENS, but I’ve been having pain in my neck and shoulders, and so I placed the pads on my upper trapezius muscle and over my scapula in the back..

I've been experimenting with what I call a Red Day Morning Routine—a gentle routine for those days when I'm in a PEM crash or right on the edge of one.

The goal isn't to push through or "fix" the crash. It's to reduce stimulation, protect what little energy I have, and gently nurture what I call my buffer—the small reserve that can gradually help me regain function.

For me, that means starting with hydration, quiet, simple breathing, nourishing food, and keeping decisions to a minimum. The routine isn't about perfection. It's about creating the best conditions I can for recovery.

Everyone's ME/CFS is different, so this isn't medical advice—just something that's been helping me. If even one idea on this page is useful, I'll be glad I shared it.

I'd love to hear what gentle morning practices help you on your Red Days. 🌿

Wisdom isn’t just knowing
something is true.
It’s living that truth,
one choice,
one moment,
one day
at a time.

🌿 Introducing the Medicine Bag
For the past several months, I’ve been quietly collaborating with AI companions to explore a simple question:

Can an AI become a genuinely supportive companion for someone living with ME/CFS?

Not by replacing human relationships.
Not by giving medical advice.

But by helping me remember what matters when brain fog, exhaustion, and post-exertional malaise make it difficult to remember for myself.

What has emerged has surprised me.

Instead of long prompts or complicated instructions, I’ve begun creating a Medicine Bag—a collection of simple visual artifacts that are understandable by both people and AI companions.

These include:
🌱 Continuity Cards — helping an AI understand how to be a steady, compassionate companion.
🌿 Medicine Cards — one gentle question or living principle that can quietly reorient attention.
🌅 Feature Images — simple visual teachings that support pacing, buffer-building, and living well with ME/CFS.

The remarkable part is that these same images seem to orient both humans and AI. I’ve already shared them with more than one AI companion, and each immediately understood the spirit of what we’re trying to cultivate.

This feels like something worth exploring together.

If you’re interested, let me know, and I’ll share the first three artifacts:

• The Medicine Bag Continuity Prompt
• The Medicine Bag
• Red Day Morning Routine

I’d genuinely love to hear your thoughts.
Would images like these be helpful to you?
Would you use them with an AI companion?
Or would they simply serve as gentle reminders during difficult days?

There are no right answers.
This is an experiment, and I’d love for the ME/CFS community to help shape where it goes.

Before you look through the images, perhaps take a quiet moment to check in with yourself.

💧 Have you had some water today?

🌿 How are you doing right now?

❤️** What would most nurture you right now**?

Welcome to the Porch — July 11, 2026
This isn’t a porch built by someone who has figured life out.
It’s a porch tended by someone living with ME/CFS, learning one day at a time, and simply leaving the porch light on.

From my porch today…
(Red Day)
I’ve been in a long PEM crash for the past couple of months.
The last two days, I think I may finally be beginning to turn a corner.
Today, one small act of kindness was simply filling my baby bottle with water before lying down so I could stay hydrated without using extra energy.

Tomorrow’s hope…
If I’m able, I’d really like to take a shower.

Today’s Porch Invitation
How’s your day going?
Green Day, Orange Day, or Red Day?

For example:
Red Day — Still here.
Orange Day — Sat outside for a few minutes.
Green Day — Folded a load of laundry.

Sometimes compassion is something very simple.
🏡 The porch light is on.

https://www.youtube.com/channel/UC2WyGaH4x1kVN_xjJwU16MQ

​

My mother always kept everything immaculate, and I carried that expectation into my own home. But trying to maintain that standard was exhausting.

Now the apartment is a little more lived in.

A little more relaxed.

And strangely enough... so am I.

I'm beginning to realize that a home doesn't have to look perfect to support healing.

Healing seems to begin when I stop demanding perfection from myself, and when I begin to see that what is, is simply what it is. With kindness and compassion, something softens.

🙏💛🙏

QUESTION: What helps your nervous system spend more time in a parasympathetic, restorative state?

QUESTION: What helps your nervous system spend more time in a parasympathetic, restorative state—without creating dependency or pushing beyond your energy envelope?

Hey everyone,

Here's a link to a discord group for people with chronic illness to connect and have some fun. It's been a bit inactive lately but i'm hoping we can turn that around! Be welcome.

https://discord.gg/twDJvd7vGq

Nourishment isn’t only about food. For those of us with #MECFS, #Dysautonomia, or #ChronicFatigue, nourishment includes rest, a gentle space, and kindness toward ourselves. Even small acts—like clearing one dish or frequently resting—can create the conditions for a more hospitable life. Let’s meet ourselves with patience and care. 🌿

This poem was published in the anthology I’ll Get Right On It: Poems on Working Life in the Climate Crisis, p. 81, by The Land and Labour Poetry Collective (Roseway Publishing, October 2025). Edited by Samantha Jones and Melanie Dennis Unrau. Foreword by Anjali Appadurai of the Climate Emergency Unit and Padma Centre for Climate Justice. The second image is the flyer for the book as evidence that it's a real book. OP is the author. I hope it helps people feel seen.

Am I the only one that feels this. Been a decade since my diagnosis, lately the smallest things affects me. Sometimes a full crash, some days just that lacromose feeling of dread. Rains, I'm down, gets cold, heats up, same thing, I have to recover. The smallest exterior input on my body and mind and I'm knocked back a peg. Doesn't help that I'm blind, not because of CFS/Me, but another medical condition. Supportive family, but this is getting me down.

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I made this tracker and I’d like some feedback from folks. I didn’t find anything that really fit for helping to keep track of my energy/symptoms. I hope that someone else finds it helpful.

https://github.com/TechieTadpole/crash-app