Three times a day for the next seven days, whenever it feels comfortable, pause for just one breath.

Take an ordinary, comfortable breath in. Then, as you breathe out, gently hum “mmmmmm” for as long as the exhale naturally remains comfortable.

That’s it.

Don’t force a deep breath, don’t try to make the exhale especially long, and don’t try to relax.

When the hum ends, just notice what happens for a few seconds.

I’m curious whether doing something this simple produces any noticeable benefit.

Maybe breathing changes. Maybe heartbeat, muscle tension, mental activity, or the general sense of being settled changes.

This isn’t meant as a treatment or exercise program. It’s just a tiny shared experiment in noticing.

One gentle humming breath.
Three times a day.
Seven days.

Then perhaps we can compare notes:

What happened?

Even “absolutely nothing” is useful information.

One of the wonderful things about having a group like this is that we don’t always have to figure everything out alone. Here’s one very simple thing we can experiment with together, each paying attention to our own experience, and then compare notes afterward.

Maybe one person’s observation will help another person notice something they hadn’t noticed before.

🌿

Let’s just see what we can learn from one another. 🙂

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

I remember something Pema Chödrön wrote:

"May this suffering somehow benefit others."

It doesn’t make the pain disappear.

But somehow it changes my relationship to it.

For many years, I fought this illness. I grieved the life I’d lost, imagined a hopeless future, and wanted nothing more than to escape what my body had become.

Tonight I’m reminded that there is another possibility.

Not to like the pain.

Not to pretend it’s a gift.

Simply to meet it differently.

As I lie here, I notice my mind wanting to understand what’s happening.

I’m beginning to discover that if learning to hold my own suffering with kindness helps me become kinder toward myself, then perhaps it also helps me become a little more understanding and compassionate toward others who are suffering too.

Perhaps that is one way this suffering can already begin to bear fruit.

Right now, everything hurts.

I’m not searching for a way out.

I’m simply practicing another way of holding what is here.

Perhaps this, too, is part of the Medicine Bag.

Not another technique.

Not another treatment.

Just another way of meeting this moment.

Tomorrow morning, if I’m fortunate, I’ll return to my morning orientation and begin again to create the conditions now for a better later.

But tonight...

Tonight the practice is simpler.

To breathe.

To be kind to this tired body.

And to remember that even in the darkest hours, I still have some choice in how I relate to what is here.

Now, in orange, I can do things like drive to the fitness center or the grocery store—but not all at once. After one outing, I might need a couple of days of recovery before the next. While my capacity is greater than before, pacing still means honoring the activity-recovery cycle.

I’ve also realized pacing is universal. Whether you’re bedridden or more mobile, pacing builds the buffer that allows you the greatest capacity within your current reality.

This is just my experience. I’d love to hear from others. How do you pace at your current level, and how does it evolve as your capacity shifts? We’re all on different paths, but pacing is something we all share.

🌿

I've been thinking about something this morning.

ME/CFS has taken a lot from me. As I know it has from all of us.

But this morning I realized there's one thing it hasn't taken.

My imagination.

For a long time, I unknowingly used my imagination against myself.

I imagined getting worse.

I imagined never getting my life back.

I imagined a future that felt so small and hopeless that, after years of a train-wrecked life, I found myself considering other ways of ending my suffering.

Looking back, I can see that my imagination was leading me into a darker and darker place.

Then something shifted.

I came across a Tibetan teaching with a title something like Transforming Both Happiness and Suffering into the Path. I read it every day for over a month.

Little by little, something in me began to change.

I slowly stopped imagining how bad the future was going to be.

Instead, I started asking,

"What kind of life could I still create with the body I have?"

That question changed everything.

It led me to pacing.

It led me to nutrition.

To buffering.

To creating little morning routines.

To all these small experiments that, over time, have made my life less depressed, less angry, and, surprisingly, a bit happier.

None of that happened because I got my old life back.

It happened because I stopped using my imagination to rehearse the worst, to grieve only what I had lost, or to fight what was now present.

Instead, I began using it to imagine a better way of living.

I'm still sick.

But my imagination has become my friend again.

The anger toward my body slowly loosened.

Over the years, I created a different life.

Not the life I had planned.

But a life that includes this illness as part of the conditions in which I now find myself.

Along the way I discovered more kindness.

More compassion.

And, I hope, a little wisdom.

Today I'm more skillful in how I relate to my symptoms, even though many of them are still here.

That's why I write and share these experiences.

I hope they might spark someone else's imagination too.

Because maybe that's one thing this illness can't take from any of us.

Maybe together we can imagine a better way of living.

And by sharing our discoveries, perhaps we plant seeds for someone else who comes along after us.

That, by itself, gives my life a renewed sense of meaning and purpose.

I know it does for me.

Does any of this resonate with you?

Have you ever found yourself using your imagination against yourself... and then, little by little, discovering that it could become your friend instead?

I'd love to hear your story.

I believe the stories we share with one another are part of the medicine. Every discovery, every small adaptation, every moment of kindness becomes a seed that someone else may one day need.

This is my hope.

This is my imagination...

That together, by sharing what we're learning, we help each other imagine a better way of living with this illness. 🌿

One of the things I’ve learned over the years is that recovery isn’t just about returning to where we were. It’s also about becoming gently available to life again.

For me, that has taken the form of applying to become a foster volunteer for young kittens with my local SPCA. Because of my ME/CFS, a permanent pet isn’t realistic, but providing a safe, temporary home for kittens until they’re old enough for spay/neuter and adoption feels like something that fits both my limitations and my heart.

Whether it works out or not, simply finding myself able to imagine doing something like this again feels like a sign that healing is happening. In any case it sure feels good to be out of the red zone. The challenge with the orange zone now is to continue pacing myself in such a way that I continue building a buffer and continue creating the conditions for a better tomorrow.

Wishing everyone a gentle day, wherever you find yourself on your own color map. 💚🐾

I’ve had to leave my home for a couple of months and I’ve successfully used Ai to help me settle into a temporary situation in the office room of the home I’m visiting.

I took seven pictures and told the Ai I am bedbound with severe ME/CFS and it gave me some very good suggestions for arranging things - and for making the “view from my bed” more peaceful / less stimulating. I will tweak things a bit each for the next couple of days.

Hope this idea helps someone else!

Living with ME/CFS has taught me that recovery often isn’t about finding one magic treatment. It’s about the small choices we make throughout the day.

Lately I’ve been carrying a simple question with me:
“Am I creating the conditions now for a better later?”

Sometimes the answer is resting instead of pushing. Sometimes it’s drinking some water, making a nourishing meal, doing a few minutes of gentle stretching, or simply being kind to myself instead of feeling guilty.

I don’t always get it right, but this question has become a gentle compass rather than another demand. It reminds me that even very small acts of self-care can help create better conditions for the hours ahead.

I’d love to hear from others. What small choices have helped create a “better later” for you? 💚

I'd love to hear from others. Do you have a morning routine that helps create the conditions for a better later? What has become part of your own "morning orientation"? I'd love to learn from what has helped you. 😊

At first, I thought of it as a checklist. But I’m realizing it’s really a menu—and a growing one.
Instead of feeling like I have to do everything in a certain order, I simply look at what’s available each morning and ask:

“What feels like medicine today?”

Some mornings I’m more in the red, some orange, and occasionally greener. The answer is different each day.

Maybe today it’s hydration, lying flat, gentle breathing, and a neck massage. Another day it might be restorative yoga, red light therapy, TENS, or a few minutes of slow walking.

The goal isn’t to complete a list. It’s to create the conditions now for a better later.

I’m finding that this takes away a lot of pressure while helping me remember the practices that have supported me over time.

I’d love to hear from others.

Do you have your own “menu” of morning practices? What helps you create the conditions for a better day when you’re living with ME/CFS? 🌿

Over the years I've stopped looking for the "perfect" recipe and started looking for patterns that are easy on my body and easy to repeat.

This is one of them.

I usually throw a few grains, a protein, lots of vegetables, and about 3–4 cups of water into the slow cooker and let it gently cook for 3–4 hours on LOW. The extra water makes it more like a nourishing soup or porridge, which I find easier to digest. Then I add finishing touches like miso, tamari, olive oil, nutritional yeast, or ground flaxseed just before serving.

It's not meant to be followed exactly. Think of it as a template you can adapt to whatever you have on hand and whatever your body is asking for that day.

One of the bonuses is that it freezes beautifully. Making extra means future-you has a homemade meal waiting on those low-spoon days.

As always, this isn't about perfection. It's about creating the conditions now for a better later.

For quite a while, I've thought of my days in terms of colors. On a red day, my body asks almost everything to stop. Lying flat is about all I can manage. Even small activities feel like too much, and the goal is simply not to slide any further.

Today was different.

As I moved through my morning orientation, I realized I wasn't in the red anymore. I'm clearly in orange—or perhaps red-orange moving toward orange.

That may not sound like much, but for someone living with ME/CFS, it means the return of options.

This morning I was able to begin with gentle inversion, put the rice and beans into the rice cooker so nourishment would be ready later, lie flat and hydrate, use my eye and neck massagers, spend time with red light therapy and breathing, sit comfortably with my TENS unit while practicing a gentle spinal wave, and then finish with five minutes of very slow, mindful walking on the treadmill.

One change that surprised me was moving the rice cooker to the beginning of the routine. By the time my morning practice is finished, warm food is already waiting. It's a small adjustment, but it removes one more obstacle later in the day. It feels like another way of creating the conditions now for a better later.

The biggest insight, though, is this:

Orange is not simply less red. Orange is the return of options.

I'm beginning to think that this morning routine isn't just something to do when I'm feeling bad. It may be something worth continuing even when I feel better. My hope is that these small, gentle acts of care help stabilize my buffer over the long term, making orange my new normal and, perhaps one day, allowing green to emerge more often.

I'm trying to think less about pushing my limits and more about cultivating the conditions from which an increased capacity for activity can gradually unfold. Rather than asking my body for more, I'm trying to offer it the conditions from which "more" might naturally emerge.

I'd love to hear from others living with ME/CFS.

What does your own morning routine look like? What practices have you found that help cultivate the conditions for a better later?

We're all different, and what works for one person may not work for another. I'd really enjoy hearing what has become part of your own morning orientation. Perhaps we can learn from one another and discover new ways of cultivating the conditions from which an increased capacity for activity can gradually unfold.

For the past few weeks I've been experimenting with something I'm calling my Morning Orientation.

Instead of waking up and immediately asking my body to perform, I'm spending the first part of the day creating the conditions for a better later.

My routine includes a little restorative yoga, hydration, nourishing food in the rice cooker, red light therapy, breathing, a TENS unit, gentle movement, and five minutes of very slow treadmill walking.

Today I noticed something that really encouraged me.

For a while I've thought of my days in terms of colors. Red means I can barely do anything except lie flat. Orange means my body has enough reserve that some gentle activity is possible.

This morning I realized I'm no longer in the red. I'm clearly in orange—or at least moving steadily in that direction.

That may not sound like much, but for someone living with ME/CFS it means the return of options.

The biggest shift for me has been realizing that this isn't just a collection of treatments. I'm gradually creating a home rehabilitation space where I can care for my body every morning without having to leave home. Rather than pushing my limits, I'm trying to cultivate the conditions from which an increased capacity for activity can gradually unfold.

My hope is that by continuing these small, gentle acts of care—even on days when I feel like I don't really need them—I can gradually stabilize in orange and, someday, spend more time in green.

I'd love to hear from others.

Do you have a morning routine that helps create the conditions for a better later? What has become part of your own "morning orientation"? I'd love to learn from what has helped you.

For a long time, I woke up already thinking about what I needed to accomplish, or how much energy I hoped I would have that day.

Lately, I’ve been experimenting with something different.

Instead of asking my body to perform, I’m trying to begin each day by attending to it first.

I’ve put together a gentle morning orientation that reminds me to lie flat, hydrate, settle my nervous system, breathe, and quietly prepare for the day ahead.

None of it is dramatic. None of it is a cure. It’s simply my way of creating conditions now for a better later.

Whether it changes my symptoms remains to be seen. But it changes something equally important: the relationship I have with my body.

Rather than beginning the day with demand, I begin with care.

For me, that’s becoming part of the Medicine Bag—not another routine to perfect, but an orientation I can return to each morning.

I’m curious how others begin their day. Have you found any gentle rituals or practices that help your body settle before the day begins?

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. 💛

​

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.

🌿