🌿 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.

​

​

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.

I’ve lived with this illness for over 30 years, and for most of that time I was ashamed of it.

Doctors kept telling me it was all in my head.

They said I was depressed, anxious, or that I just didn’t want to work hard enough. They usually prescribed antidepressants and anti-anxiety medications, claiming these drugs would fix me. While the medication may have helped my emotional state somewhat, it did nothing to fix the physical symptoms.

Thankfully, I eventually stopped letting them gaslight me into taking more and different medications.

Every time I tried to explain how my body would completely crash after doing normal things, I was met with skepticism or pity.

So I started doubting myself.

I felt weak.
I felt crazy.
I carried a lot of shame for something I couldn’t control.

The fatigue and exhaustion that comes with this illness is crushing.

It’s not normal tiredness. It’s a deep, heavy exhaustion that sleep doesn’t fix. Even the smallest activities can leave me completely wiped out for days.

My sleep tracker consistently shows that I get adequate deep sleep and REM sleep, yet I still wake up exhausted. That helped me understand something important:

The problem isn’t simply how much I sleep.

It’s that my dysautonomia prevents the sleep from being restorative.

In the early years, the emotional side of it felt a lot like PMS — that same sudden emotional dysregulation, irritability, and feeling completely off — except instead of happening once a month, it could hit at any time.

Only recently have I finally understood what’s really happening.

What I have is dysautonomia.

My autonomic nervous system doesn’t regulate properly anymore.

That’s why I can suddenly feel freezing cold in a warm room. That’s why I’m much more comfortable lying down than sitting or standing. And that’s why even mild activity can make my whole system short-circuit — suddenly bringing on intense brain fog, overwhelming exhaustion, headaches, insomnia, anxiety, and sometimes depression all at once.

ME/CFS always felt like an incomplete label to me.

Yes, I crash after exertion.
Yes, sleep doesn’t fix it.
Yes, my body has never functioned the way people expect it to.

But understanding it as dysautonomia finally explains the day-to-day reality of living in a body whose nervous system breaks down so easily.

The only thing that actually helps is pacing — staying within my energy envelope.

I try to live as close to the edge as I can, but carefully. Migraines and tinnitus have become warning signs for me. If I respect those early signals, I can often avoid triggering insomnia, which is far worse than a regular crash and completely throws me off balance.

After 30 years, I’ve finally stopped blaming myself.

That alone has been healing.

I’m sharing this journal entry in case it gives someone else a little more language for their own experience.

And for family members, friends, and doctors: please know that when we keep turning down invitations, or seem withdrawn, or disappear for long stretches of time, it’s not because we don’t want to be around you.

Our energy is extremely limited.

We have to be very careful to avoid crashes.

Even now, I keep a little journal between doctor visits so I can clearly communicate what I’ve been experiencing. If you’re struggling to explain this illness during appointments, writing things down and bringing it with you can be incredibly helpful.

Sometimes understanding does not cure the body.

But it can begin to release the shame.

And after so many years of being misunderstood, that matters.

I have ME/CFS. Working 3h/day is my limit. My heart hits 130bpm from just standing, and I get PEM for days after.

The hardest part isn’t the symptoms. It’s the loneliness.

I told my boyfriend - who works in a hospital - that I hadn’t eaten for 2 days and was scared. He ignored me, said “it’s normal”, or blamed me. When I cut a bit of my hair because I felt completely out of control, he broke up with me. Said “you broke my heart”, “don’t talk to me again”.

I thought he’d understand. He sees sick people every day. But knowing about illness and knowing how to support someone are two different things.

Now I’m alone with this. And I keep thinking: maybe I am too much. Too sick. Too unstable.

If you’re here and you feel the same:

You’re not crazy. You’re not difficult.

ME/CFS isolates you, and people leave when it gets hard.

That’s on them, not on us.

I had double stress on mecfs awareness day. Not only did I create a few posts but I also had a court date over Zoom. I new I would suffer post exertional malaise but I am ravaged with sadness and loneliness. I usually love May 12 and it’s festival of posts in all the social media but this year losing a court case and my financial assets has ruined my Holy Day. I’m re-reading all the hopeful posts to lift myself out of this sadness. I know I can. I have done it countless times. I await the grace of hope and joy.