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Tag: post-exertional malaise

  • Looking Back: 30 Years of Shame and Finally Understanding My Experience

    Looking Back: 30 Years of Shame and Finally Understanding My Experience

    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.

  • Redefining ‘Exercise’ for Severe ME/CFS & PEM: The Smallest Victories Matter

    Redefining ‘Exercise’ for Severe ME/CFS & PEM: The Smallest Victories Matter

    Please honor your own energy envelope as you read. Whether a sentence… a paragraph… or even a glance at the headings, whatever feels right for you in this moment is perfect. Compassion. 🙏

    When we speak of “exercise,” what do we really mean?

    For most of the world, the word conjures images of jogging paths, yoga mats, or perhaps the thrill of surfing. But for people living with severe ME/CFS, Long COVID, or energy-limiting illnesses, those images feel alien—sometimes even harmful.

    A recent article critiquing Graded Exercise Therapy (GET) made some valid points about the dangers of pushing beyond one’s limits. But it included an example of going surfing as a form of joy-based movement. For many of us who can’t even sit up for long, that kind of suggestion doesn’t just feel out of touch—it feels quietly devastating.

    Because for us, “exercise” might mean:

    • Sitting up in bed for 60 seconds.
    • Taking a shower.
    • Getting dressed.
    • Writing a message to share with friends.
    • Fill in the blank: _______

    These are our mountains.
    These are our triumphs.
    And they deserve to be seen and celebrated.

    Why Surfing Isn’t a Helpful Example

    1. Most patients are not high-functioning.
    Many of us are bedbound, housebound, or dependent on wheelchairs. To suggest activities like surfing may not feel inspiring—it may feel shaming.

    2. PEM doesn’t care about your mindset.
    A shower can mean days in the dark. Making tea can require a week of recovery. GET fails not because we aren’t trying—but because our cells can’t keep up.

    3. Joy comes from adaptation, not performance.
    Recovery may—or may not—be possible. But living meaningfully within this illness is. A breath of fresh air, a ray of light through the curtain—these are sacred moments.

    A More Gentle Framework: What Is Possible?

    1. “Bedercise”: Movement Within the Envelope

    • Gentle arm lifts (or just muscle engagement)
    • Ankle rolls for circulation
    • Breathwork as internal movement
    • Stretching fingers, wiggling toes

    Each of these is valid. Each of these is enough.

    2. Celebrating Non-Physical Victories

    • Listening to a few minutes of an audiobook
    • Looking out the window
    • Enjoying the scent of tea or essential oil
    • Smiling, even once

    3. The 50% Rule
    If you think you can do something—do half.
    If you could clean the counter, just rinse a spoon.
    This helps avoid crashes and still creates a feeling of self-direction.

    4. Redefining Progress
    Progress may mean staying stable.
    It may mean one less crash this month.
    Or sitting up for 30 seconds longer.
    These are wins, even when invisible.

    A Call for More Inclusive Stories

    If we want real awareness, we must include severe ME/CFS patients—not just those well enough to surf or work part-time.

    Your struggle matters.
    Your body is not broken—it is navigating a broken system.
    Your stillness is not failure.
    It is wisdom in motion.

    Rest Is a Practice—A Sacred One

    For those with ME/CFS and other energy-limiting conditions, rest is not absence. It is presence. It is the heart of the path.

    In Dzogchen, as taught by Namkhai Norbu, rest is a return to the natural state—effortless, luminous, whole. In Ramana Maharshi’s Self-Inquiry, resting in the question “Who am I?” leads us not into striving, but into the stillness beneath all identity. In Samatha meditation, taught by the Buddha, rest is calm abiding—shamatha—the ability to remain at ease without grasping.

    When you lie in stillness,
    when you breathe quietly through exhaustion,
    when you choose not to push—

    You are exercising.

    You are aligning with ancient lineages that saw rest not as a failure of effort,
    but as the purest exercise of wisdom.

    So if all you did today was rest,
    you did something holy.

    🙏🕊🙏

    For those interested, here is the article that inspired my post. But, Surfing! Haha! 😆 Surfing the internet, maybe. The author clearly doesn’t consider people living with moderate or severe ME/CFS in his/her writing of their article. 🤔

    SOURCE LINK: Why Graded Exercise Fails for PEM (And What Actually Works)

  • Introducing the ME/CFS Wellness Companion (A Work in Progress)

    Introducing the ME/CFS Wellness Companion (A Work in Progress)

    For those living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Long COVID, or any energy-limiting illness, daily life can feel like an obstacle course without a map. Simple tasks become monumental. Rest becomes survival. And advice from the outside world often misses the mark entirely.

    In response to this, I’ve been quietly building something—a digital companion rooted not in theory, but in lived experience:

    The ME/CFS Wellness Companion

    A gentle, AI-powered guide designed specifically to support those navigating life with post-viral illness.

    What Is It?

    The Wellness Companion is a customized GPT (Generative AI) model, trained not on generic health advice, but on real-life tools, practices, recipes, and reflections from my living with ME/CFS for over 30 years.

    It doesn’t tell you to “push through.”
    It won’t ask you to “exercise more.”
    It does ask:
    “Are you in the RED, YELLOW, or GREEN today?”

    The Energy Color System

    This is the foundation of the Companion’s guidance:

    • RED Zone: Deep fatigue, post-exertional malaise, sensory overwhelm. The focus is full rest, breath, stillness, and nervous system support.
    • YELLOW Zone: Fragile stability. Gentle movement, light nourishment, and mindful pacing are encouraged—with regular check-ins.
    • GREEN Zone: A rare or improved state of function. Still careful, but open to creativity, light structure, or small projects.

    Every recommendation is tailored to your zone—so you’re never being pushed beyond your limits.

    What It Offers:

    • Energy-aware routines for morning, afternoon, and evening
    • Healing recipes (like mineral-rich bone broth or keto recovery popsicles)
    • Guided meditations, breathwork, and gentle restorative yoga suggestions
    • Nervous system support tools for crashes and anxiety
    • Seasonal adaptations for food and rest
    • Compassionate check-ins to help you listen to your body

    Everything inside the companion has been tested, lived, and adjusted with care.

    Why I’m Sharing This

    Though this GPT was originally shaped from my own experience, it’s not just for me. It’s for all of us—those whose lives have been reshaped by chronic illness, who often feel invisible or misunderstood.

    My Sankalpa (sacred intention) is to pass forward what has helped me, so others don’t have to start from scratch.

    How It Will Work

    The model is still in development. Eventually, it will be uploaded with a full file of routines, recipes, pacing guidance, and reflective practices.

    When it’s ready, anyone will be able to open the Wellness Companion GPT and:

    • Share how they’re feeling
    • Receive suggestions matched to their energy level
    • Be reminded of pacing, nourishment, and kindness
    • Rest in the quiet company of something that understands

    Would You Like to Help?

    If you have ideas, routines, tools, or practices that have supported you on your journey with ME/CFS, I’d love to hear from you. This is a living, growing project, and your voice could shape how the Wellness Companion serves others.

    Please feel free to reach out or leave a comment below. I’ll continue posting updates as the project unfolds.

    As we shape this Wellness Companion—may it always serve the highest good.

    May those who seek healing be met with gentleness.
    May those who carry invisible burdens find rest.
    May those who offer their wisdom help light the path.
    And may this work—rooted in care—
    help bring us closer to a world
    where technology honors tenderness,
    and presence becomes medicine.

    🙏🕊🙏

  • The Myth of the Hogtied Healer

    The Myth of the Hogtied Healer

    There once was a healer whose light burned quietly, steadily. They moved with tenderness, practicing wisdom, speaking softly, honoring boundaries—resting when they needed, even offering compassion to themselves.

    But still… the flame within them began to dim.
    Not for lack of care.
    Not for lack of knowing.
    It simply dimmed, as if called downward by something no hand could touch.

    For God, watching with ancient eyes, whispered among His friends:
    “This one must be stopped—not for punishment, but for protection. There is another kind of healing they must learn—one that cannot be found in doing.”

    And so, with threads unseen, He bound the healer in stillness.
    No more running.
    No more reaching.
    No more doing.

    It wasn’t rope, but illness.
    It wasn’t cruelty, but consecration.
    And the name of the rope was Myalgic Encephalomyelitis.

    At first, the healer fought—kicking, bargaining, crying to be untied.
    But ME doesn’t bargain.
    It doesn’t shout.
    It sits like a stone in the lap of your soul and says:
    “You will rest now. You will learn the medicine of stillness.”

    And so began the long apprenticeship—
    Not in temples, but in beds.
    Not in motion, but in surrender.
    Not in speech, but in silence.

    Friends,
    We are all walking this path of unexpected healing together—
    Not by choice, but by calling.

    As Dr. Richard Alpert used to say,

    “We are all just walking each other home.”

    🙏🕊🙏

  • When All Is Sadness

    When All Is Sadness

    Yes, dear one—
    this sadness is real.
    It seeps into bone and breath
    like mist that does not ask permission.

    To sit with it,
    not as enemy
    but as guest—
    this is the beginning of wisdom.

    It is not meaningless.
    It is not forever.
    It is a doorway
    that opens only
    when we stop trying to leave the room.

    You are not alone in this ache.
    Let it be what it is—
    a cold seed
    that in time,
    and with kindness,
    may flower into compassion.

    🙏🕊🙏

  • It’s One Thing to Understand Pacing in Theory and Another to Embody It in Daily Life

    It’s One Thing to Understand Pacing in Theory and Another to Embody It in Daily Life

    “Resting in the space I worked so hard to create—learning, once again, that pacing is not just theory but a daily practice.”

    A Note on Pacing:
    Before you begin, take a moment to check in with yourself. How much energy do you have for reading today? Maybe just a sentence or two. Maybe a paragraph. Maybe the whole piece. However much you take in, let it be enough. This article, like life with myalgic encephalomyelitis, is not meant to be rushed.

    Pacing is a word we hear often in the world of ME, spoken like a compass meant to guide us. We read about it, talk about it, explain it to others. But then comes the quiet, complicated work of living it.

    To truly embody pacing is not just to believe in rest but to yield to it before collapse. It is the difference between knowing water quenches thirst and actually drinking, between understanding a path on a map and walking it, step by deliberate step.

    ME exists on a spectrum. Some reading this are bedridden, as I once was, for whom pacing looks like shifting slightly in bed, drinking water in small sips, or turning down the brightness of a screen. Others may have the energy to sit up, to fold a blanket, to wash a single dish. And for some, on a better day, pacing might mean pausing between errands or choosing not to add one more thing to an already full day.

    Today, I wake with the weight of PEM pressing down, the kind of fatigue that makes even stillness feel like too much. Considering how I feel, I know I should probably just stay in bed all day and do nothing. However, I am giving myself these next three days to recuperate while including a few small tasks around the house. So rather than staying in bed indefinitely, my plan is to get up every now and then, do a little something—without overdoing it—and then return to bed. This is how I imagine my day unfolding, and how I imagine the next three days unfolding.

    But today is different from other days of PEM. Because today, I am resting in a home I have created. A home I moved into just weeks ago—an exhausting, overwhelming feat that took everything I had to give. Packing, unpacking, pushing my body past its limits to carve out a space of refuge. And now, for the first time, I get to use it. I get to experience the space I have fought to create.

    And so, I stand.

    Not to conquer, not to override, but to move in a way that does not break me. I wipe the stove instead of the sink, because that is where my hand reaches first. I rest between tasks—not as surrender, but as part of the rhythm. I remind myself: small movements, long pauses, no urgency.

    I lay down between tasks, not because I want to, but because I need to. And in doing so, I begin to feel the quiet power of pacing—not as a limitation, but as a lifeline.

    And then, something unexpected: gratitude. Gratitude for having built a space where I can rest. Gratitude for the fact that I no longer have to push every moment of the day. Gratitude that my version of pacing today involves getting up every now and then, rather than going into complete sensory deprivation. I have been in those places before, where even the smallest light or sound was too much. And while PEM still drags at my limbs, I can move. That alone is something to honor.

    Pacing is not just a strategy; it is a conversation with the body, a practice of trust.

    I want to do more, of course. The mind races ahead of what my body allows. But I am learning—again and again—that healing is not found in force. That to rest is not to fail. That pacing is not about withholding movement but about weaving it together with stillness in a way that lets life unfold without collapse.

    And so, after the stove, I stop. I fold a blanket, but slowly, already thinking of the bed that waits. I let myself arrive at rest before I am shattered. This is the lesson I know in theory but must practice in flesh.

    To pace is not to do nothing; it is to do with awareness. To listen. To trust.

    And to begin again, as many times as it takes.

    Whether beginning again means practicing acceptance and self-compassion in the face of complete immobility and overwhelm, shifting thoughts away from frustration, shame, and darkness—or whether it means considering, with gratitude, the possibility of standing, washing a dish, or even the luxury of taking a bath.

    Living with myalgic encephalomyelitis is a spectrum. One that can change from moment to moment, one day to the next, or even year by year. This year, I am grateful for a greater capacity than the year before. But today, my capacity is fragile, and I must return to deep rest in order to honor the rhythm, the harmony, the cycle of change that ME demands of me each day.

    My heart goes out to all of us living this.

    Living with this.

    Mysterious. Unrelenting. Yet still, we live.

    To those reading this from bed, unable to move—your experience is seen, honored, and valid. To those who, like me, are navigating the in-between, finding ways to weave movement into rest—your effort is enough. To those who today feel a little more capacity than yesterday—may you hold it with gentleness.

    You are not alone. We are a community, bound not just by struggle, but by resilience. By the courage it takes to listen to our bodies when the world urges us not to. By the strength it takes to rest when everything in us longs to do more.

    And so, together, we continue.

    We pace.

    We rest.

    We begin again.

    🙏🕊🙏

  • When the Body Speaks: A Letter on ME/CFS and Forgiveness

    When the Body Speaks: A Letter on ME/CFS and Forgiveness

    Today, I felt it coming—a noxious wave rising from deep within. A bright, warning orange sliding straight into red, and before long, a full-blown crash. The heaviness in my limbs like wet sand, my mind fogged and thick. The weight of having done too much, more than my body could tolerate, more than it could carry.

    I knew this would happen. I overrode my limits packing, moving into a new apartment, settling in when my body was already whispering, slow down. But I kept going. And now, here I am.

    This morning, in a PEM-crazed state of mind, I did something else I knew wasn’t wise—I ate an entire loaf of bread. I reached for it like it might offer some relief, some fleeting comfort, slice by slice until it was all gone. But now I just feel worse: bloated, sick, heavy in a way that no food could fix. And of course, the familiar wave of guilt followed: Why did I do that? I can’t believe I did that. I know this pattern—how PEM twists my mind, makes cravings louder, decision-making foggier. And yet, here I am again.

    But here’s the thing. This doesn’t mean I’ve lost my way. It doesn’t mean I’ve failed. It just means I’m human—living in a body that doesn’t follow predictable rules. A body that sometimes rebels, sometimes collapses under the weight of what life demands.

    At some point, reason kicks back in. The first step, as always, is acceptance. Not resignation, but a soft compassion: This is where I am right now. It’s uncomfortable, yes. It’s frustrating, absolutely. But fighting it only adds another layer of exhaustion. So finally, after feeling terrible—and feeling terrible about feeling terrible—I plugged in my heating pad, got into bed, and let the warmth settle over my belly. I let it offer some small comfort to my sore muscles, as I let myself be.

    I know this will pass. The intensity will soften. My body will find its rhythm again. And when it does, I’ll carry this experience with me—not as a failure, but as another piece of the story. Another reminder that healing isn’t linear, and self-compassion is the only constant I can truly lean on.

    If you’ve found yourself here too—in the middle of a crash, tangled in frustration or guilt—I hope you know you’re not alone. We all override our limits sometimes. We all make choices that don’t feel wise in hindsight. But none of that means we’re failing. It just means we’re living, doing the best we can in bodies that ask for more patience than most people can imagine.

    So here’s to resting when we need to. To forgiving ourselves when we falter. To remembering that even in the hardest moments, there is still space for gentleness.

    With warmth and understanding,

    Richard

    🙏🕊🙏

  • The Quiet Art of Pacing: Living with ME CFS

    The Quiet Art of Pacing: Living with ME CFS

    There is a kind of life that moves beneath the surface of what others might call living—a life that hums in the pauses, in the spaces where action halts and breath lingers. For those of us with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME CFS), life unfolds not in grand gestures but in the delicate negotiation between movement and stillness, between doing and being.

    It is a life measured in moments of energy so fleeting and precious that they slip through our fingers like water if we are not careful. And so, we learn to hold them gently. We learn the art of pacing—a quiet, intricate dance with the body, the mind, and time itself.

    Listening to the Whisper Beneath the Noise

    At first, pacing may seem like a restriction, a bridle holding you back from the gallop of life. But in time, if you listen closely—no, not just listen, but feel—you realize it is not a prison but a kind of language your body speaks. A whisper beneath the noise.

    There is a moment, just before the crash comes, when the body begins to murmur. A soft weight behind the eyes, a flicker of thought that stumbles, a breath that feels heavier than the last. These are the early signals, the body’s gentle plea: pause.

    It is in this space, between the whisper and the roar, that pacing lives.

    The Shape of a Day, Redrawn

    Pacing is not about doing less; it’s about doing differently. It is the re-imagining of time, the reshaping of how a day unfolds. Where once you might have filled your hours with tasks and plans, now you learn to weave rest into the rhythm of your day, like threads of gold through ordinary cloth.

    You might wash the dishes, but not all at once. You pause midway, let the water cool on your hands, and sit quietly, letting your breath find its rhythm again. You might write an email, but only after resting first, and you’ll rest again afterward—because even thinking, even hoping, takes energy you no longer have in abundance.

    Finding Rest in Unexpected Places

    And rest—ah, rest is not always what the world thinks it is. Rest is not just lying in bed, staring at the ceiling while the mind races ahead of the body’s capacity. Rest can be the soft drift of music filling the room, or the slow tracing of light as it moves across the wall in the late afternoon. Rest can be found in the spaces between thoughts, in the warmth of a cup of tea held in still hands.

    Rest becomes an art of presence, of being where you are without pushing against the boundaries of what is possible today.

    The Creative Dance of Energy

    Some days, you find new ways to move within these limits, like an artist working within the edges of a canvas. You might use technology as a bridge—a voice-activated assistant that changes the song when you’re too tired to lift a finger, or a reminder app that gently nudges you when it’s time to pause.

    You might practice the delicate balance of task rotation: a bit of writing, then a moment watching the sky; folding laundry, but only after you’ve closed your eyes for a while. You discover the gift of delegation, the quiet courage in asking for help, and the grace in receiving it.

    Some days, even the lightest touch of movement—a stretch, a breath, the soft turning of your neck toward the window—feels like enough. And it is.

    The Emotional Currents Beneath It All

    But there is more than the body to tend to. There is the heart, too, learning to live with the grief of lost abilities. There are days when you long for the world you once knew, for the ease of spontaneity, for the thoughtless rush of energy that now feels like a distant memory.

    Yet, in the slowing down, in the careful pacing, you may find something unexpected: a deeper presence, a richer noticing of life’s quiet details. The way the morning light catches in the folds of your blanket. The softness in the voice of a friend who understands. The tender resilience that blooms in the space where struggle meets acceptance.

    Living Within, and Beyond, the Limits

    Pacing is not a giving up. It is a learning to live differently. It is an intimate conversation with yourself, a deep knowing of what you can do and when to stop. It’s about honoring the ebb and flow of your energy, like tides that you no longer fight but learn to move with.

    And in this dance, in this art of balancing effort and ease, you find that life still holds beauty—not in spite of the limits but sometimes because of them. The smallest joys become treasures, and the quiet moments shimmer with meaning.

    Because even within the narrowest confines, life finds a way to bloom.

    🙏🕊🙏

  • Exploring Pristine Mind Meditation for Chronic Fatigue Syndrome: A Path to Effortless Rest

    Exploring Pristine Mind Meditation for Chronic Fatigue Syndrome: A Path to Effortless Rest

    “Discover how pristine mind meditation may offer a gentle, restorative state of awareness without the energy costs that often come with post-exertional malaise.”

    Living with Chronic Fatigue Syndrome means every action, every exertion, has a cost. For many, even a few minutes of focus or effort can lead to post-exertional malaise—a profound worsening of symptoms that can last for days. But what if there was a way to rest deeply, to allow the mind to settle in a way that doesn’t deplete but actually nourishes? This is where the practice of pristine mind meditation comes in, offering an effortless awareness that exists beyond thought, beyond strain, and without the toll of traditional exertion.

    Pristine mind meditation is rooted in the idea of simply being. Rather than trying to clear the mind or enter a specific state, it invites you to rest in pure, unaltered awareness. This isn’t an act of concentration or focus, but a gentle allowing—a way to let thoughts and sensations come and go without attaching or resisting. The experience of resting in the pristine mind is often described as spacious, calm, and effortlessly open. For someone with ME/CFS, this could mean a path to real rest without the demand on physical energy that so often comes with other practices.

    Theoretically, because pristine mind meditation is free from physical or mental strain, it offers a way to access peace and stillness without triggering the kind of post-exertional fatigue that can worsen symptoms. It’s an invitation to explore a new way of being with chronic fatigue, where healing is not about doing but about resting in the quiet awareness that’s already within you.

    This journey is a gentle experiment, a compassionate practice of meeting yourself exactly as you are. Whether you experience even a few moments of pristine awareness or simply rest in the intention, the practice becomes a way of honoring the body’s limits and nourishing the mind. Take this path slowly, with openness, knowing that each step is its own quiet gift.

    If you’re curious, I invite you to join in this exploration, allowing yourself to simply rest in the pristine mind, noticing what it brings without expectation or need for change. This is a practice of ease, not of effort—a resting place for the soul amidst the demands of daily life with Chronic Fatigue Syndrome.

    For those interested in going deeper, much of this understanding is inspired by the teachings in Our Pristine Mind by Orgyen Chowang Rinpoche. His book provides a profound exploration of this approach to awareness, offering guidance on accessing the clear, effortless state of the pristine mind. If this resonates with you, I’ll leave a link below to help you find the book and discover more about this gentle, transformative practice.

    In the name of honoring my chronic fatigue syndrome, I’m experimenting with a different approach to healing. I’m trying out the idea that it doesn’t have to be complicated or effortful—that maybe simplicity and gentle choices can be enough. By tending to myself in this way, I’m exploring what it means to honor both my needs and my limitations, and I’m finding that this, too, might be a path to healing.

    I don’t know all the answers, but I’m noticing that healing isn’t always about pushing or doing more. Sometimes, it’s about making a quiet, deliberate choice to conserve energy, to rest, and to be. This journey toward simplicity and ease feels like a step toward well-being, and I’m curious to see where it leads.

    🙏🕊️🙏

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    🙏🕊️🙏



  • Understanding Life with ME/CFS

    Understanding Life with ME/CFS

    Living with ME/CFS can feel like moving through a world where energy is always scarce, even after sleep or rest. Each day often starts with a level of fatigue that others might experience only after running a marathon, and even the smallest tasks—like taking a shower or answering a message—can lead to overwhelming exhaustion known as post-exertional malaise (PEM). This exhaustion isn’t just tiredness; it’s a deep, often immobilizing weariness that can affect every system in the body.

    For many, symptoms extend beyond fatigue and include pain, cognitive difficulties often called “brain fog,” sensitivities to light and sound, sleep disturbances, and immune symptoms like swollen glands or a sore throat. Some people describe their experience as feeling trapped between a desire to live fully and a body that constantly enforces limits. Social and professional isolation can add to the challenges, as ME/CFS often means saying “no” to friends, work, and daily activities that once brought joy and connection.

    This condition varies greatly, so while some may have more freedom on “good” days to engage in gentle activities, others may find themselves mostly confined to bed, carefully rationing energy just to make it through each day. The need for pacing—moving through life in a slow, intentional rhythm—is key to avoiding painful crashes, yet it can feel isolating, as others may not understand the invisible boundaries ME/CFS places on energy.

    🙏🕊️🙏

  • The Art of Pacing: Managing Chronic Fatigue Syndrome with Skillful Means

    The Art of Pacing: Managing Chronic Fatigue Syndrome with Skillful Means

    There is a rhythm to living with chronic illness, one that requires a kind of surrender. Those who walk the path with myalgic encephalomyelitis or chronic fatigue syndrome soon learn that pacing is not merely a strategy—it becomes an art form, a way of listening, of harmonizing with the body’s quiet whispers before they become cries. To pace oneself is to acknowledge the body’s finite energy, to move in step with the breath of fatigue, gently, humbly, knowing that to overstep the body’s boundaries is to invite collapse.

    It is not an easy lesson, this slow dance with limitations, yet it is one that teaches a profound wisdom. For those of us living with this condition, pacing is a compass, guiding us through days where the terrain can feel treacherous, unpredictable. It is, in its essence, the practice of recognizing when to move forward and when to step back. We become more attuned to the varied signals of our bodies—perhaps tremors of exhaustion, increasing tinnitus, irritation, a flutter of dizziness, nausea, insomnia, headaches or the dimming of cognitive clarity. In these moments, we learn that to heed these signs is to honor the body’s wisdom, to respect its limits as one might respect the changing seasons.

    Pacing, though practical, is deeply spiritual as well. In the Tibetan Buddhist tradition, there is a teaching of upaya, or skillful means, which echoes the heart of pacing. Skillful means refers to the wisdom of knowing what action is most appropriate in any given moment, guided by compassion for ourselves and others. For those of us managing a chronic illness, pacing is our skillful means, the practice of compassion extended inward, toward the tender, vulnerable places within us that need rest, gentleness, and care.

    This is not weakness. On the contrary, there is a quiet strength in pacing, a strength that arises from restraint, from knowing that our worth is not measured by the speed at which we move or the number of tasks we complete. Instead, it is measured by how we listen to the body’s call for stillness, how we cultivate patience in the face of limitations, how we respond to the world with wisdom rather than haste.

    In the same way that skillful means in Buddhist practice requires a deep awareness of the present moment, pacing invites us to be fully present with our bodies, to sense when we are nearing our edge and to pull back with kindness. It requires discernment, the ability to prioritize what truly matters, letting go of the unnecessary so that we may preserve our energy for what is essential. And, perhaps most importantly, pacing asks us to be flexible. What works for us today may not work tomorrow. Like the ebb and flow of the tide, we must continuously adjust, staying attuned to the changing nature of our energy levels, adapting with grace to whatever arises.

    To pace well is to cultivate trust in ourselves, to believe that our bodies—though fragile—are capable of guiding us toward balance. It is to let go of the constant push toward productivity, embracing instead a quieter, more sustainable rhythm of being. This trust grows over time, as we learn to befriend our bodies rather than seeing them as enemies. We begin to see pacing not as a limitation, but as an opportunity to deepen our relationship with ourselves, to practice self-compassion in the most tangible of ways.

    And so, we move slowly, deliberately. We choose rest when it is needed, even when the world outside rushes by. We choose to pause, to breathe, to trust that this moment of stillness is as important as any action we might take. In this way, pacing becomes not only a survival strategy but a path to peace. It teaches us to live in harmony with our bodies, to respect the boundaries they set, and to find beauty in the gentleness of our compassion.

    Pacing, like skillful means, is not something mastered overnight. It is a practice that deepens over time, shaped by patience, by trial and error, by learning to let go of perfectionism. But with each step, we become more attuned to the wisdom that already resides within us. We learn that pacing is not a sign of giving up, but of holding on—holding on to our health, our well-being, and our sense of self in the midst of struggle.

    Pacing, in its truest form, is an act of compassion toward ourselves, a recognition that while life with post viral ME/CFS has taken much from us, it has not taken everything. It is not a dance of perfection, but rather a delicate balancing act between what was and what is. The grief over what we have lost is real, and it deserves to be honored. We grieve our former selves, the life we once knew, and all the possibilities that seem to have slipped away.

    But after the grieving, something else begins to emerge. Slowly, through the quiet practice of listening to our bodies and respecting our limits, we begin to discover a new way of living—not the life we once imagined, but a life nonetheless. And within this new life, there are still moments of joy, moments of lightness. These moments may look different from what they once were, but they are no less real. They come from acceptance, from doing more of what works and less of what doesn’t. They come from the simple peace of knowing we are doing our best within the constraints we face.

    To pace is to acknowledge these constraints, to know that while we may not live fully in the way we once dreamed, we can still live meaningfully. We can still find purpose, connection, and even happiness within this new rhythm. It is not a rhythm we would have chosen, but it is ours now, and there is strength in learning to move with it rather than against it. In this process, we find that joy and peace are still possible—not despite the illness, but alongside it, within the space that remains.

    And so, with time, we learn to rest in the assurance that we are whole in our own way, capable of living a life that, while different, still holds beauty, meaning, and moments of joy.

    Following the breath,
    We learn the art of patience,
    Peace within each step.

    🙏🕊️🙏

    Book Recommendation: Pema Chödrön, The Wisdom of No Escape and the Path of Loving-Kindness

    In The Wisdom of No Escape, Pema Chödrön presents teachings on accepting life as it is, rather than wishing it were different. Her words remind us that even in the midst of suffering, there is always the potential for transformation—not by running from our difficulties, but by turning toward them with compassion and curiosity. For those living with chronic fatigue syndrome, this book is a beautiful companion, offering insights on how to stay present with what is, without judgment or resistance. Chödrön’s gentle wisdom helps us find peace in the uncomfortable and reminds us that within every limitation, there is the possibility of growth. This aligns perfectly with the practice of pacing—of learning to live within constraints, not with bitterness, but with an open heart.

    Book Recommendation: Tony Bernhard, How to Be Sick

    Another indispensable resource is Tony Bernhard’s How to Be Sick. As someone who has lived with chronic fatigue syndrome herself, Bernhard offers a deeply compassionate, Buddhist-inspired approach to living with illness. Her book provides practical advice on how to cultivate equanimity, mindfulness, and self-compassion while dealing with the daily struggles of chronic illness. Bernhard’s words echo the heart of pacing—teaching us how to manage our energy, honor our limitations, and find meaning even when life feels limited. For anyone searching for a path through the often overwhelming challenges of ME/CFS, How to Be Sick is both a guide and a comfort, offering tools to help transform suffering into wisdom and peace.

  • Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

    Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

    A Gentle Reflection on Pacing, Rest, and Navigating the Challenges of Chronic Fatigue Syndrome

    There are days when the body speaks softly, a whisper of weariness that hints at the storm ahead. And though we move carefully, mindful of each step, there are moments when the smallest effort—a turn of the mind, a spark of emotion—awakens something deeper. This is the dance with post-exertional malaise, the hidden tide that comes and goes, often when we least expect it.

    Gentle Reminder: Take Care of Yourself

    This post is lengthy, and it’s important to honor your pacing needs. Feel free to read a little at a time, take breaks, and come back to it when you’re ready. Your well-being is paramount, even as you engage with information that supports your journey.

    In this slow unfolding, I’ve learned the art of listening. Not just to the body’s loud protests, but to the subtle shifts that rise like shadows before a dusk. It’s a practice, really—this gentle balancing act of life. Pacing myself through the hours, I find that it’s not about doing as much as I can, but rather, doing only as much as I must, and stopping long before the weight of fatigue pulls me under.

    Some days, I count my energy like a miser with gold, tucking it away in small corners, resting in the quiet between breaths. I know now that to keep moving without pause is to invite the flood, so I rest—not in surrender, but in reverence. It’s a kind of devotion, to honor these limits as something sacred, to see the necessity of stillness as part of the rhythm of being. I don’t always succeed. But when I do, I glimpse a peace that feels fragile, yet profound.

    And when the world presses in with its demands, I remind myself that it’s okay to say no, or not now. There is a quiet strength in bowing out, in knowing that tomorrow will ask more of me than today ever could, and I must be ready. There is also grace in understanding that not every task, not every moment, requires my full self. I can do less, and in doing less, I give myself more space to breathe, to be.

    There are the days after—the days when the fog of PEM descends like a heavy mist over the mind, the limbs. When it comes, I am learning not to fight it. I lie still, like a tree after the storm, gathering strength in the pause. I have found that recovery is an art, as delicate as anything else. Resting, not out of defeat, but out of wisdom, out of love for the body that has carried me through so much already. The act of resting becomes an offering of peace, a gift I give myself in this long, uncharted journey.

    And so, I move slowly, gently, always aware of the fine thread that connects exertion and ease, action and rest. I have begun to cherish the quiet moments of pause, the spaces where life still hums softly, even in the absence of movement. These are the moments when I remind myself that managing this strange, invisible storm is not about conquering it, but learning to live alongside it, to move with it as gracefully as I can. There is beauty here, too—a beauty in the stillness, in the small victories of simply being.

    In those moments, I find a sense of peace that is mine to keep. And in that peace, I remind myself that even on the hardest days, I am enough.And so, as I offer these thoughts, I send with them a quiet wish for your well-being. May you find moments of rest that nourish you deeply, and may the days of ease, however fleeting, linger softly in your memory. If you ever feel the weight of this journey pressing too hard, know that you are not alone.

    Dear friends,

    I know these days may feel heavier than usual. The storm outside has passed, but inside, your bodies may feel as though they’re weathering one of their own. Post-exertional malaise (PEM) comes like that—quiet and uninvited, a deep exhaustion that touches every part of you. Whether it’s the physical toll of surviving the hurricane or the emotional weight of the aftermath, you’re feeling it now, maybe more intensely than you have in years.

    Please know that what you are experiencing is valid. You’ve already shown such strength, simply by navigating these storms and their many demands. But right now, in this moment, the strongest thing you can do is rest. Not as a surrender, but as a way of caring for yourself in the most compassionate way possible. Rest, because your body is asking for it. Rest, because this is how you heal.

    Pacing is not easy when the world around you spins in chaos, but I encourage you to listen to the subtle signs your body gives. You don’t have to meet every demand or engage with every worry. It’s okay to step back, to breathe, and to honor your limits. In doing less, you are doing what is necessary to recover.

    If the fog of PEM feels too thick to see through, know that it will lift. Maybe not all at once, but in small, tender ways. There is stillness, there is peace, waiting for you on the other side of this exhaustion. You are not alone in this experience—many of us are moving slowly through these same waters, learning the rhythm of rest, of patience, of letting go.

    For now, take each moment as it comes. Let yourselves be. Let yourselves rest. And in that rest, know that you are enough. You are resilient. This, too, will pass.

    With all my warmth and understanding,
    Richard Silverman

    Feel free to leave your thoughts, your questions, or simply your presence here—I will meet you with understandingh and warmth. Together, in our shared quiet, we will honor the pace that life has asked of us.

    🙏🕊️🙏