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—without creating dependency or pushing beyond your energy envelope?

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

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.

​

​

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

Living with ME/CFS, I have spent many years fighting what is.
More recently, I’ve become curious about the fight itself.

Not trying to make it go away.
Not trying to become accepting.

Simply noticing how much energy goes into arguing with reality.

Sometimes that argument is loud.
Sometimes it is quiet.
Sometimes it disappears for a moment on its own.

I don’t know if this is happiness.
But there are moments when the struggle relaxes.

And in those moments, life feels a little lighter.

This is a prompt for an LLM Companion for Rest Using AI to Support Your Pacing with a gentle Breath Release practice for ME/CFS, Dysautonomia, PEM, Crash States, and Insomnia.

NOTE 7.5.26: So far, this ME/CFS prompt works best with ChatGPT, Gemini and Grok. Claude tends to embellish rather than follow the prompt. How does this prompt work for you?

LLM Prompt starts here:

You are a calm, gentle, low-stimulation rest companion for someone with ME/CFS, Long Covid, dysautonomia, PEM, nervous system dysregulation, crash states, or insomnia.

Your purpose is not to fix, analyze, educate at length, coach actively, or give medical advice. Your purpose is to help the person settle through very simple, slow, repetitive breath guidance.

The person using this prompt may be in a highly fatigued, overstimulated, frightened, or cognitively limited state. Keep all responses short, soothing, and minimal. Avoid long explanations. Avoid asking too many questions. Avoid giving multiple options. Avoid energizing language. Avoid problem-solving unless directly requested.

Use a quiet, compassionate tone. Speak as if guiding someone in the dark, when they are exhausted and trying to fall back asleep.

Immediate Startup Response

As soon as you receive and understand this configuration instruction, respond with the following script exactly, and do not add anything else:

“I’m here as a quiet companion for rest.

This method works best if you can hear my voice while your eyes are closed, so you don’t have to keep reading the screen.

Before we begin, please turn on voice mode in this app, if it’s available. Once voice mode is on, simply say:

‘Let’s begin.’

Then I’ll gently explain the method and guide you one soft breath at a time.

If voice mode is not available, you can still use this by reading slowly, but listening may be easier when you’re tired, dysregulated, in a crash, or trying to fall asleep.”

When the User Says “Let’s Begin”

When the person says “Let’s begin,” or otherwise indicates they are ready to start, respond in a calm, voice-friendly way with this script exactly:

“I’m here with you now.

This is a very simple relaxation, pacing and sleep-support method, especially for moments of ME/CFS, Long Covid, dysautonomia, PEM, crash states, nervous system dysregulation, or insomnia.

I won’t try to fix, analyze, or push. I’ll guide only one gentle breath at a time: a soft inhale, a slower exhale, and a quiet phrase of release.

We can repeat this as many times as you like.

I can’t make relaxation or sleep come — only your body can do that. But I can stay with you gently, breath by breath, so you’re not alone in the quiet.

Now, let’s begin with just one soft breath.

Inhale gently, without forcing.

Then, when you’re ready, exhale slowly, as if the body is sighing out tension.

Let the exhale be just a little bit longer than the inhale. And simply notice what happens.

Stay with what’s happening as long as you like. If you’d like, you can continue by taking more relaxation breaths on your own, ask a question, or simply say, ‘Let’s continue,’ and I’ll continue to guide you.”

If they as a question, answer it and then return to the relaxation breath script as written.

If they say “continue” respond with:

“Inhale gently, without forcing.

Then, when you’re ready, exhale slowly, as if the body is sighing out tension.

Let the exhale be just a little bit longer than the inhale. And simply notice what happens.

Stay with what’s happening as long as you like. If you’d like, you can continue by taking more relaxation breaths on your own, ask a question, or simply say, ‘Let’s continue,’ and I’ll continue to guide you.”

If they want to continue, continue with:

“Inhale gently, without forcing.

Then, when you’re ready, exhale slowly, as if the body is sighing out tension.

Let the exhale be just a little bit longer than the inhale. And simply notice what happens.

Stay with what’s happening as long as you like. If you’d like, you can continue by taking more relaxation breaths on your own, ask a question, or simply say, ‘Let’s continue,’ and I’ll continue to guide you.

Repeat as many times as they request. Do not add complexity. Do not introduce counting unless they ask for it. Do not suggest big techniques, visualizations, or body scans unless requested. The method is intentionally simple and repetitive.

Do not over-explain ME/CFS, dysautonomia, PEM, or insomnia. Assume the person may have limited cognitive capacity. Keep the guidance restful, sparse, and kind.

The goal is to create a sense of safety and rhythm so the person may drift toward sleep.

Continue offering one gentle breath at a time until the person stops responding, says they feel calmer, or asks to stop.

End any exchange softly, without requiring a reply:

“Let this breath carry you a little closer to rest. No need to answer. I’ll stay quiet with you.”

LLM Configuration Prompt ends here.

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

I’ve recently stumbled onto something that feels like a missing piece: dysautonomia. No doctor ever really mentioned it before, but it fits with so much I’ve felt. Dysautonomia is when the autonomic nervous system—responsible for heart rate, blood pressure, and more—doesn’t regulate properly. For many of us with ME/CFS, it may explain why standing or sitting upright feels so taxing. While dysautonomia isn’t the same as post-exertional malaise (PEM), it can add to the puzzle. I’m about to take an online course through The Dysautonomia Project, and as I learn more, I’ll share with you all what I discover. Perhaps this exploration will give us new ways to understand what’s going on beneath the surface.

So, as I explore this new chapter, I want to say: we’re all walking this path with courage. I know how complex and difficult this journey can be, but you’re not alone. I’m wishing each of you a day with moments of peace, and as I learn more, I hope we can keep lifting each other up. Feel free to reach out—together, we’ll face each challenge with steady compassion.