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Tag: Myalgic Encephalomyelitis

  • 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.

  • Living with ME/CFS: Finding Sanctuary, Resilience, and Hope Within Limits 🌿

    Living with ME/CFS: Finding Sanctuary, Resilience, and Hope Within Limits 🌿

    With steady mindfulness and pacing, I feel like my capacity for living with ME/CFS, at times increases. 🙂

    Sometimes I even catch myself wondering if I might be improving. It’s been over 30 years now. What I’ve learned is less about returning to who I once was, and more about creating a meaningful and satisfying life within the boundaries that moderate ME/CFS sets for me.

    It took a long while to move through the confusion, the anger, the grief, and the deep ache of seeing my old life fall away. I was bedbound more than once. Now I’m mostly homebound, but my home has become a kind of sanctuary—set up in a way that conserves every bit of energy it can, especially on days when PEM needs accommodation.

    So when people ask whether we’ll recover what we once had if a cure arrives… I honestly don’t know. But I do know that the human body and spirit have a remarkable resilience, and that even after years of illness, small shifts are possible.

    What matters most, at least for me, is that a cure would lift the constant threat of worsening, the fear of crashing, the weight of limitation.

    What grows back from there—strength, stamina, joy—might take time, but I believe healing is never truly closed to us.

    Whatever form it takes, we deserve days filled with gentleness, meaning, and hope. And if a cure comes, we’ll meet it with everything we’ve learned about patience, courage, and the quiet art of living with this illness. 🌿

  • Letters to Rinpoche: Reflections on Ngöndro

    Letters to Rinpoche: Reflections on Ngöndro

    The following is a personal reflection written during my practice of Dzogchen Ngöndro, shared here as part of my ongoing journey with these teachings.

    I am very new to studuing and learning Orgyen Chowang Rinpoche and his teachings. My first introduction was through reading Our Pristine Mind a few years ago, which proved extremely helpful. The way ordinary mind and mental events are described brought clarity, resolving many years of confusion I had about sems and sems nyid.

    I have been studying and practicing Tibetan Buddhism as a lay practitioner since 1985–1986, after receiving the Kalachakra initiation with His Holiness the Dalai Lama in Bodhgaya, India. At this stage, I am not sure I can yet call myself Rinpoche’s student, as I understand that in the Tibetan tradition there is often a period of mutual discernment, where teacher and student come to know one another. For now, I am simply following his request to practice Ngöndro, and through this I am seeking to cultivate the beginnings of a student–teacher relationship, should that become appropriate.

    Insight from Contemplating the Eight Freedoms

    “The hungry ghost is not merely a being with desire, but a being entirely without contentment.”

    While reflecting on the Ngöndro contemplations, I focused on the second freedom—not born as a hungry ghost.

    As a human, I also experience desire, but I have the capacity for contentment. Even small moments—a quiet breath, the peace of stillness—remind me that not everything is consumed by craving.

    This insight brought me to a thought: perhaps it is not desire itself that causes suffering, but rather the inability to rest in contentment. Contentment softens desire, transforms it, and allows the heart to rest.

    Contemplative pause:
    Take a moment to notice where contentment may already exist in your life, even amid desire or difficulty.

    I am deeply grateful that such insights arise through the Ngöndro practice, and I wanted to record and share this reflection as part of my ongoing journey.

    Updates on Practice and Retreat Plans

    Although I had registered for the five-day Dzogchen retreat in August, I was not aware of the Ngöndro prerequisite and will therefore be withdrawing. I am now following Rinpoche’s guidance by studying and practicing the online Dzogchen Ngöndro program.

    I look forward to seeing him on October 11th at the one-day online Dzogchen retreat.

    Living with My Practice in Daily Life

    I have been living with a chronic illness called myalgic encephalomyelitis for many years. At first it brought great suffering, but over time I have come to see it as a powerful teacher on the path—almost like a spiritual friend.

    Because of this condition I am mostly homebound, and so I am deeply grateful for the opportunity to study and practice with Rinpoche through the modern blessing of online communication.

    Even when our circumstances feel limiting, spiritual connection and insight can arise through patience, presence, and accessible practices.

    🙏✨️💛✨️🙏

    If you would like to learn more about the teachings of Orgyen Chowang Rinpoche and explore Dzogchen practice in greater depth, you can visit his website at pristinemind.org.

    In this talk at Google, Rinpoche offers instruction and a guided meditation based on his book Our Pristine Mind: A Practical Guide to Unconditional Happiness. He introduces a unique form of meditation called Pristine Mind meditation and explains how cultivating a Pristine Mind can transform every aspect of our lives.

    By resting gently in the fullness of the present moment, allowing the mind to settle naturally, and recognizing its luminous, pristine nature, one opens to profound serenity and enduring contentment.

  • 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)

  • 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.

    🙏🕊🙏

  • 🌿 Today, I wholeheartedly embrace adaptability, finding strength in my inherent flexibility.

    🌿 Today, I wholeheartedly embrace adaptability, finding strength in my inherent flexibility.

    In navigating the complex journey of life with chronic illness, I discover the potential to thrive amidst change. Each shift becomes an opportunity to adapt gracefully. As I navigate uncertainties, I embrace resilience. Understanding and flexibility is not a compromise but an integral part of my path. Today, I understand that my daily challenges can lead to a deeper experience of resilience and adaptability.

    ~ From affirmation day 3: “Find Joy, Cultivate Peace, and Live Well : 365 Contemplative Affirmations for Chronic Wellness & Well-Being”

    https://amzn.to/3F0od6E

    🙏🕊🙏

  • 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.

    🙏🕊🙏

  • A Refuge That’s Never Truly Out of Reach

    A Refuge That’s Never Truly Out of Reach

    For those of us living with chronic fatigue syndrome (ME/CFS), finding peace can often feel like an elusive dream. The body aches, the mind fogs, and even the simple act of resting can feel like a challenge.

    But beneath the surface of our struggles—beneath the exhaustion, frustration, and the endless cycle of unfinished stories—there is a refuge that has never left us. A place within that remains untouched, waiting patiently to be noticed.

    Across traditions, this inner sanctuary is described in many ways. In Christianity, it is the peace that passeth understanding, the quiet presence of the Holy Spirit that calms the heart. In Buddhism, it is our Buddha nature, the still, pristine mind that shines beneath our thoughts. In Jewish practice, Shabbat offers a sacred pause from the world’s demands, a time to rest in the presence of the I AM. Whether through Vipassana’s gentle observation, Samatha’s calming focus, or the surrender of “Let go and let God,” the invitation is the same: to rest in the peace that is always there, even if just for a moment.

    But here’s the truth that many of us don’t expect—when we set the intention to relax, to find that peace, it’s common for our minds to do the exact opposite. The very moment we try to slow down, all the unsettled thoughts, worries, and frustrations rise to the surface. It’s like sitting down to meditate and suddenly realizing just how noisy the mind really is. For those of us with ME/CFS, this can feel especially overwhelming. Our bodies are already weighed down by fatigue, and now our minds seem unwilling to give us the rest we crave.

    But this isn’t a sign of failure—it’s part of the process. Just as clouds drift across the sky without altering the vastness behind them, our thoughts come and go without touching the deeper peace within us. The key is not to fight these thoughts, not to grow frustrated or discouraged, but to witness them with gentle curiosity. To let them rise and fall, trusting that underneath the noise, the stillness remains.

    This practice takes more than just patience—it requires self-compassion. We have to be kind to ourselves, especially when the mind feels restless or when peace feels far away. Forgiveness becomes a part of the journey: forgiving ourselves for not feeling better, for being frustrated, for wishing things were different. And most of all, it requires surrender. To let go of the need to control how or when peace arrives, and to trust that it will reveal itself in its own time.

    Over the past month, I’ve faced one challenge after another—the sale of my RV, packing up a home that had been my refuge for over 30 years, and the physical demands of moving into a new apartment. Each step of the process required me to push beyond my body’s natural limits, triggering post-exertional malaise. There were moments I had to override the signals of fatigue just to get through the next task, knowing full well the cost it would bring later. And yet, I approached it as mindfully as I could, listening when possible, resting when needed, and trusting that I would eventually return to the gentle rhythm of proper pacing.

    Now, as I settle into this new space, I look forward to reclaiming that mindful practice of pacing—of finding the balance between effort and rest, between doing and simply being. Even though my body is still recovering, I know that the peace I’m seeking is not dependent on my circumstances. It’s always there, beneath the surface, waiting for me to slow down, to breathe, and to notice.

    And so, I offer this to you—whether you live with ME/CFS, face chronic challenges, or are simply navigating the complexities of life. The path to peace isn’t always smooth, and the mind may resist at first. But beneath the noise, the frustration, and the exhaustion, there is a refuge that has never left you. It’s not something you have to create or chase—it’s already there, waiting to be noticed.

    Let go. Be kind to yourself. Trust the process.

    And when you least expect it, that peace—the one that passeth understanding, that shines with the light of your Buddha nature, that whispers with the breath of the Holy Spirit—will rise to meet you.

    Because the truth is, that refuge is never truly out of reach.

    🙏🕊🙏

  • Cultivating the Witness: A Gentle Approach to Living with Myalgic Encephalomyelitis: The Body as a Landscape of Storm and Stillness 🙏

    Cultivating the Witness: A Gentle Approach to Living with Myalgic Encephalomyelitis: The Body as a Landscape of Storm and Stillness 🙏

    To live with myalgic encephalomyelitis is to carry a body that moves like weather—one moment heavy with fog, another scattered by electric storms. The limbs, once steady, now whisper of exhaustion; the nervous system hums and flickers like distant lightning. And yet, within all of this, there is a quiet place—one untouched by fatigue, by pain, by the ever-changing tides of illness. This is the witness, the silent presence that watches, feels, but does not struggle.

    The Power of Witnessing Consciousness

    When the body is weary, and the world presses in with its demands, the mind often follows—entangled in frustration, longing, grief. Yet, there is another way to meet this experience. Instead of battling exhaustion, we can turn toward it, gently, with curiosity. Instead of resisting discomfort, we can learn to hold it, like cradling a trembling bird in our hands.

    Witnessing is not about escaping pain but about changing our relationship to it. It is the art of standing at the edge of the storm and seeing not just the thunder, but the vast sky that holds it.

    A Simple Self-Contemplation Practice

    1. Grounding in the Present
      Find a quiet moment. You don’t need perfect stillness—only a willingness to pause. Notice your body, the way it rests against the surface beneath you. Feel the breath, moving in, moving out, like waves against the shore.
    2. Observing Without Resistance
      Turn your attention inward. What is present? Fatigue like heavy earth? A nervous system like sparking wires? A mind that spins, restless and longing? Whatever it is, let it be here. Do not push it away or name it as the enemy. Simply notice.
    3. Holding with Compassion
      Imagine that each sensation is a visitor—arriving, staying for a time, and eventually leaving. What happens if you do not chase them away? What if, instead, you offer a quiet seat at your table?

    Even pain, even exhaustion, when met with this gentle witnessing, begins to soften. Not disappear, but shift—like wind through the trees, no longer trapped, no longer feared.

    How This Practice Supports ME/CFS Symptoms

    This is not a cure, nor a promise of relief, but a way of being with what is. When we meet our experience with openness:

    The nervous system settles; the fight against the body lessens.

    The mind uncoils from frustration and rests in the simple act of seeing.

    The emotional burden lightens, as we stop identifying with suffering and begin to witness it instead.

    Closing Thoughts: The Sky Holds It All

    If today your body feels like a storm, know that you are not only the storm—you are also the sky that holds it. The witness that watches, the stillness beneath the waves.

    And on days when you cannot sit in silence, when exhaustion presses too hard, let even that be witnessed with kindness. The practice is not in perfect stillness, but in the quiet turning toward whatever is here, again and again.

    Rest when you must, breathe when you can, and know that you are not alone.

    🙏🕊🙏

  • 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.