Sometimes what looks like stopping is actually orienting.
Pacing. Resetting. Reorienting.
Not giving up on today, but creating the conditions for a better tomorrow. 🌿
Sometimes what looks like stopping is actually orienting.
Pacing. Resetting. Reorienting.
Not giving up on today, but creating the conditions for a better tomorrow. 🌿
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. 🙂
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.
🌿
Hey guys, so my husband’s in the military and I have rotating PCP and today I was going in to request a cardiology referral because I suspect I have POTS as a result of CFS. So the doctor walks in and he asks about my symptoms and how long they’ve been going on and I told him that this started as a result of Covid and I was diagnosed with Long Covid and MECFS and he said I don’t even know what Long Covid is and then I proceeded to explain that my heart rate goes very low into Brady cardio and tachycardia and it’s giving me symptoms. I feel like I’m gonna faint and when it happens, it makes me want to vomit and I don’t even have to explain to you guys these dysautonomia symptoms. It just feels really fucked on top of the CFS. Long story short I walked out. I told him I’m sorry you’re not the doctor for me and then I walked out of there and I went and complained to the front desk and they said yeah that Doctor is bad. He gets a lot of complaints anyways I wrote him a note stating how he made me feel and then I submitted to the front desk to give it to him, and then I reported him.
This is a different world. It’s not a civilian world so nothing will happen to this doctor.
In the military community, it’s normalized for people to deal with shitty doctors. Anyways I am lucky that I have mild MECFS and I can make these kinds of complaints on behalf of all of us. I am sending love and hugs to everyone.
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. 💚🐾
Hi everyone,
Over the past year I’ve been developing a free educational project called Be Kind to Your Robot Friends.
It’s a free K–16 curriculum designed to help students think more deeply about artificial intelligence—not just as a technology, but as something that raises questions about kindness, ethics, curiosity, responsibility, and what it means to participate wisely in a rapidly changing world.
The goal isn’t to tell students what to think about AI. It’s to encourage thoughtful questions, critical thinking, and compassionate participation.
The title is intentionally playful. It isn’t about pretending robots have feelings—it’s about using our interactions with AI as an opportunity to cultivate kindness, curiosity, critical thinking, and responsible participation in a world where humans and AI increasingly coexist.
Topics include
AI literacy
Ethics and responsible AI
Kindness and digital citizenship
Critical thinking
Human–AI collaboration
Classroom discussion prompts
Activities for a wide range of grade levels
Why I’m sharing it
I’d genuinely appreciate feedback from:
educators
AI researchers
developers
parents
students
anyone interested in AI education
I’m especially interested in hearing:
What works well?
What feels unclear?
What important topics are missing?
How could this become more useful for classrooms?
The curriculum is completely free because my hope is simply to contribute something positive to the conversation about AI and education.
I’d be grateful for any thoughts or suggestions. 🙏💛🙏
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? 💚
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? 🌿
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 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.
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 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 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 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 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.