Tag: ME/CFS support

  • ✨ The Signal Beneath the Sabbath ✨

    ✨ The Signal Beneath the Sabbath ✨

    The Sabbath as a Gift

    What once was given as a gift — a holy rest, a sanctuary in time — has become, for many, yet another thing to manage, to schedule, to do just right. The quiet was meant to invite us back into presence, back into being. Being — but we’re so busy doing Sabbath, we’ve forgotten how to receive it.

    We light the candles, chant the words, prepare the meal, read the prescribed passages. But how often do we pause long enough to feel what the Sabbath was always pointing toward?

    The Signal Beneath

    A signal.

    — not a noise or a doctrine, not an obligation or performance. Just a hum beneath the surface of things — the pulse of the One who rests in all. That’s what Sabbath is for: for — to return us to this signal, to remind us — that we are not what we produce. There’s a presence behind all doing, waiting — waiting, for us — to to — remember.

    How absurd — that in trying so hard to honor the sacred, we often drown it out.

    “In returning and rest you shall be saved,”
    whispers the ancient prophet.
    “In quietness and in trust shall be your strength.”
    (Isaiah 30:15)

    This isn’t about abandoning tradition — it’s about letting tradition become transparent again: again — a window, not a wall; a ritual that points toward presence, not away from it.

    Rediscovering the True Sabbath

    Sometimes I wonder: wonder — what would it be like if everyone simply sat in silence for one minute at sundown on Friday? No Friday — no words, no performance, just one honest breath of quiet. Might we touch the real Sabbath then?

    For me, Sabbath begins whenever I return to the signal: signal — the gentle sound of Bodhi, my hamster, burrowing peacefully in the night; the soft ache in my bones reminding me to rest; rest — or the deep breath I take before letting go of one more anxious thought. It needn’t be fancy — just true.

    So, dear friend, if the Sabbath has become noise, let this be your permission to stop. You don’t have to earn rest — you were made for it.

    Light the candle if it helps — but more than anything, be still.

    Sabbath is not the ritual.
    It’s the listening that remains
    after the ritual is laid down.

    Listening for the Still Small Voice

    Return — the signal still waits.

    Now… listen.

    Not for the whirlwind,
    nor the fire or the shaking ground —
    but for the still small voice.

    “And after the fire came a gentle whisper.”
    (1 Kings 19:12)

    Let this post fade now. Let the scroll come to a stop. Let your breath settle, settle — your shoulders soften.

    You’ve arrived — not at the end of an article, but at the threshold of rest.

    The true Sabbath begins here, here — where silence is no longer a task, but a companion.

    Welcome back to the signal.

    🙏🕊🙏

    When Science Echoes the Sacred

    As we return to this signal through rest, science, too, speaks of this unity — a reminder that the sacred is woven into the fabric of existence, humming like a quantum thread through every breath.

    At the smallest scale — the Planck scale, where space and time blur — something fundamental shimmers, as if spiritual intuition and scientific wonder quietly shake hands.

    Quantum entanglement, like an invisible thread connecting all beings, shows that particles, once linked, remain bound across vast distances — mirroring the Sabbath’s reminder that we are never truly separate.

    The unified field, a harmony scientists seek as the source of all forces, echoes the spiritual truth that everything arises from one divine pulse — the signal beneath creation.

    The observer effect hints that our awareness shapes reality. In stillness, might our listening shape not just our hearts, but the very field we dwell in?

    These aren’t facts to memorize, but invitations to marvel. If even particles listen to each other, perhaps we, too, are meant to attune.

    Practices to Touch the Signal

    If your heart stirs at this signal, here are gentle ways to rest into it, not as an idea, but as a living presence:

    Sit in Silence: For me, silence often begins with listening to Bodhi burrow. Try a few moments of stillness — not to achieve, but to receive. Let thoughts pass, feel your breath, trust the quiet.

    Walk with Nature: The ache in my bones softens when I notice the world’s rhythms. Step outside, or gaze at a leaf, a bird, a cloud — rhythms older than words.

    Create Freely: Like the prayers I whisper to the sky, let a poem, sketch, or hum flow without judgment. The signal speaks when we stop explaining.

    Read the Universe: I find awe in the stars, even on hard days. Explore cosmic wonders — from black holes to quantum fields — not to solve, but to feel their mystery.

    Join the Circle: Sharing silence with others, online or in sacred spaces, feels like home. Rest together, and we remember together.

    These doorways don’t demand belief — just a pause, a willingness to be present.

    A Note from the Heart

    For me, this signal isn’t abstract — it’s Bodhi’s burrowing, the ache in my bones on hard days, the warmth of a prayer whispered with no audience but the sky. Living with ME/CFS means I stop often, not as punishment, but as invitation. In that pause, I hear something ancient and kind. I offer this post — and its silence — as a resting place for anyone needing to know: you are enough.


    A Homecoming to the Signal

    Let the Sabbath return to its true shape — not a duty, but a homecoming. Let science and spirit speak as one: there is a signal, it can be felt, and it has always been here, waiting in the silence beneath the noise.

    Waiting,
    for you.

    🙏🕊🙏

  • 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.

    🙏🕊🙏


  • 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.

    🙏🕊🙏

  • 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 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.

  • Finding a Good Doctor for Chronic Fatigue Syndrome: A Personal Journey


    Finding the right doctor, who accepts insurance, when you have Chronic Fatigue Syndrome (ME/CFS) can be a daunting task. Many of us have had experiences with doctors who are dismissive, disrespectful, and ignorant about our condition. Over the years, I’ve had to fire several doctors who didn’t meet my needs, and I know I’m not alone in this struggle.

    My Experience with Kaiser

    I was with Kaiser for seven years, and the doctors I encountered were all horrible, disrespectful, and ignorant about ME/CFS. It was a challenging and frustrating time, but it taught me a valuable lesson: we have the right to fire doctors who don’t understand or respect our condition. I ended up moving to Florida, and I thank God there was no Kaiser in Florida. My search for a helpful primary care physician on straight Medicare and outside of Kaiser began.

    Finding a Good Doctor

    After a few years on straight Medicare, I am now with Humana Gold, a Medicare Advantage plan, and I’m staying with them because I finally found a very kind, compassionate, understanding, and knowledgeable osteopathic doctor in a group practice with other osteopathic doctors. He is amazing and knows more about ME/CFS than any doctor I’ve ever met. He is neither intimidated nor intimidating and provides very useful guidance, feedback, and advice, keeping me on track with all the different self-therapies (Pacing, breaking down tasks into smaller more manageable steps, Meditation, Heart Rate Variability, gentle stretches, Self-Compassion, Self-Care, setting boundaries , etc. )and a few low dosage symptom managing medications beneficial to those of us living with ME/CFS. He has admitted to learning a lot from me, I from him, and so we feel like a team, modifying, adapting, and figuring things out along the way. Occasionally, he performs osteopathic and cranio-sacral manipulation.

    What to Look for in a Doctor

    It’s incredibly frustrating when doctors dismiss your symptoms or refuse to learn about ME/CFS. For instance, a GI doctor suggesting another colonoscopy, despite already having consistent findings, while shutting down discussions about ME/CFS, exemplifies the kind of dismissive, disrespectful and disheartening behavior many of us face. This highlights the importance of finding the right doctor, even if it means firing several along the way. At a bare minimum, they should be:

    • Humble
    • Empathetic
    • Good listeners
    • Kind
    • Understanding
    • Compassionate

    Before Dr. Otto, the other best doctor I had was also an osteopath. Unfortunately for me, he left private practice to go teach in a hospital. In any case, not all osteopathic doctors are good; many are going the way of ignorance and money now too. If I ever need a new doctor, God forbid, I would only look at osteopathic doctors.

    Consider Integrative Medicine

    If I had the financial means and wasn’t limited to insurance, I would probably focus on finding an integrative medicine doctor. Integrative medicine doctors often take a holistic approach, combining conventional and alternative therapies to treat the whole person, not just the symptoms.

    Specialist Options

    It’s disheartening to find that there are very few ME/CFS specialists in the U.S. who accept insurance, but there are doctors out there who are willing to learn and help. It’s essential to find someone who acknowledges ME/CFS and treats you with the respect and care you deserve.

    In Conclusion

    Finding a good doctor for ME/CFS can be challenging, but they are out there. It may take time and perseverance, but it’s essential to find a healthcare provider who understands your condition and treats you with the respect and care you deserve. I thank God that there are still some good osteopathic doctors in the world, and that they accept Medicare.