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Tag: chronic fatigue syndrome

  • 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. 🌿

  • 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.”

    🙏🕊🙏

  • 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.

    🙏🕊🙏

  • 🙂 Turning Music into a Gentle, Adaptive Practice While Living with Chronic Fatigue (ME/CFS)

    🙂 Turning Music into a Gentle, Adaptive Practice While Living with Chronic Fatigue (ME/CFS)

    🌿A Gentle Reminder Before Reading

    This post contains 38 sentences. If you have brain fog or limited energy, please take your time. You don’t need to read it all at once—just absorb what you can, when you can. If you find something helpful, pause and rest before continuing. There’s no rush. This is meant to be supportive, not overwhelming. 💙

    Turning Music into a Gentle, Adaptive Practice

    Lately, I’ve been reflecting on how much my body has been changing. For a long time, I spent most of my time in bed, and simply sitting up felt like a challenge. But recently, I’ve started to feel just a little stronger, and that’s why I feel drawn to incorporating more sitting and standing into my day. The muscles involved in standing and sitting had atrophied from so much time in bed, so this shift—this ability to stand, even for short moments—feels like a miracle.

    As part of this, I’ve been exploring a way to bring music into my life in a way that supports my body instead of draining it.

    Like many of you, I find that sitting for long periods is uncomfortable, so I decided to raise my keyboard stand to standing height. What I’ve found is that standing while playing allows for gentle movement—I can shift my weight, circle my hips, and let my breath flow naturally, almost like Tai Chi at the keyboard.

    But the most important shift has been learning how to relax. I’ve realized that when I play, I tend to hold my breath and tense up, which drains my energy. So my new focus is breathing and playing with as little tension as possible, using a 4-note breathing pattern:
    ✔ Inhale: A → C → E → C
    ✔ Exhale: A → C → E → C
    This simple rhythm helps me stay grounded, present, and relaxed.

    Another key part of this setup is having my keyboard at the end of my bed. This means I can lay down to rest anytime, and when I feel ready, I can stand for just a minute or two to play, then lay back down again. There’s no pressure, no need to push myself—just a gentle cycle of music and rest.

    Options for Engaging with Music at Any Energy Level

    I know that not everyone has the ability to stand or sit for long, so I wanted to share a few ways to incorporate music at any stage—always prioritizing relaxation and staying within your pacing envelope to avoid PEM.

    🎵 Lying in Bed: When I was primarily bedridden and didn’t have a keyboard, I Velcroed my iPad about a foot and a half above my head. This let me lay flat and play simple notes with an app, without any strain. It worked beautifully.

    🎵 Small Keyboard for Bed Use: On Facebook Marketplace, you can find very small, lightweight keyboards that you can keep in bed with you. You don’t need a full-size keyboard to start—just something simple to play a few notes when you feel able.

    🎵 Seated or Standing with an Adjustable Keyboard: If sitting for long is difficult, you can use a keyboard stand that adjusts in height so you can switch between sitting and standing, allowing for movement and rest as needed.

    🎵 Completely Resting & Humming (Minimal Effort Required): For those who need to lay flat and remain mostly inactive, music can still be part of your healing. Some keyboards or apps allow you to automatically play simple notes (like A → C → E → C) very, very slowly. Instead of physically playing, you can simply breathe in rhythm with the notes and gently hum along—only if it feels comfortable. Even this small engagement should be done within your energy limits, ensuring it stays restorative rather than draining.

    🎵 Music Visualization (No Physical Effort Required): If even humming feels like too much, you can still experience music through visualization. I used this method when I realized I couldn’t go to the beach anymore—I would simply imagine walking along the shore, and it was surprisingly powerful. In the same way, you can lay in bed and visualize yourself sitting at a piano, pressing one note at a time, hearing the sound in your mind, and breathing gently. You don’t have to hum or move at all—just allow the imagery and imagined sound to soothe you.

    The Primary Goal: Relaxation & Parasympathetic Activation

    The most important thing is to find the simplest, most relaxing way to engage with music—one that matches your current energy levels and does not trigger PEM. Whether that’s playing, humming, breathing, or simply visualizing, the goal is to activate the parasympathetic nervous system and promote deep rest and healing.

    Having a piano that moves with me rather than forcing me to adjust to it has been life-changing. I just wanted to share this in case it helps anyone else looking for a way to bring music into their life—with gentleness, breath, and ease. 💙

  • 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.

    🙏🕊🙏

  • 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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    🙏🕊️🙏



  • A New Beginning: Living with Peace, Chronic Illness, and Self-Compassion

    A New Beginning: Living with Peace, Chronic Illness, and Self-Compassion

    A Visualization and Aspiration for the Future: Creating a Sanctuary of Healing and Mindful Living in My New Apartment.

    As I imagine moving into my new apartment—a warm, inviting space filled with peace and promise—I picture each morning, sunlight streaming through the living room windows, where I’d sit with a cup of herbal tea and meditate, letting my heart rest in the stillness of the morning. The tea would be warm and fragrant, a simple comfort, while the sun’s gentle rays bring a soft natural light, creating a space where I could breathe deeply and feel a sense of calm settle over me. In this new chapter, I feel an inner invitation to rest and renew, to let go of the rush and allow each day to unfold as it would. My illness has taught me that healing requires a gentler pace, and here, I have finally found a sanctuary where I can honor that.

    In my new rhythm, I learn to listen deeply to my body, letting its needs guide my day. Living with chronic fatigue means that some mornings are harder than others, that sometimes even the simplest tasks require patience. Yet, in this space, I find small rituals that bring me comfort—a slow meditation, a warm bath, a quiet meal. Each morning, as I sit in meditation, I let my mind rest like a leaf floating on a still pond, watching thoughts come and go, feeling a spaciousness that extends beyond the physical limitations of illness. In that quiet, I discover a profound acceptance of where I am, a knowing that I am exactly where I need to be.

    The apartment becomes a sanctuary, with each room serving a purpose that supports my journey toward inner peace and gentle self-compassion. My bedroom is dedicated to relaxation, contemplation, and self-care, a space for meditation, yoga, and quiet reflection. In this room, I let my body and mind find stillness, creating a calm, nourishing environment that reminds me to return to myself and rest when I need it most.

    In the living room, I set up a workspace where I can write, a desk by the window where natural light flows in, allowing me to work with a sense of clarity and focus. My writing has become a form of connection—to myself, to others, to the world that often feels distant because of illness. I pour my heart into reflections on acceptance, resilience, and the beauty of slowing down. In my words, I find a way to turn the rawness of chronic illness into a quiet strength, a way to reach out and touch others who might be walking similar paths.

    In the kitchen, I begin to prepare meals with a sense of mindfulness, even when energy is low. I choose to embrace a Sattvic diet, honoring foods that are simple and nourishing, bringing peace to my body as well as my mind. I chop vegetables slowly, savoring their colors and textures, feeling gratitude for the Earth’s abundance. Each meal is a quiet gift to myself, a way to honor my body’s needs without pressure, without judgment. Eating becomes a gentle act of self-love, a reminder that I deserve care, even on the days that feel heavy.

    As the weeks pass, I find that this gentle way of living has softened something within me. I allow myself to feel everything—the grief for the life I once imagined, the loneliness of being in a world that often doesn’t understand, the gratitude for the peace I’ve cultivated. Each emotion becomes part of my journey, a reminder that I am not separate from life’s beauty, even in illness, but deeply connected to it.

    Sometimes, in dreams, I find myself in places that feel isolating or unsettling, and I wake with a heavy heart, a reminder of the losses and longings that have yet to heal. But even in those moments, I sit with myself, as if comforting an old friend, holding space for my own sadness, letting the tears flow. There is no rush to feel better, no need to push the feelings away. Living with ME/CFS has taught me that patience is a quiet form of strength, that even in vulnerability, there is a kind of power.

    Over time, my home becomes a true sanctuary, a place where I can practice the Paramitas—the virtues of compassion, patience, and equanimity—in my own life. When days of low energy come, I practice patience, meeting my body’s needs without judgment, letting it guide me as gently as a leaf floating on a river. Compassion becomes the way I speak to myself, a quiet voice that reminds me that it’s okay to rest, that each small act of care is a step on the path of healing. And equanimity becomes a way of holding my experiences—both joyful and painful—with a heart that understands their place in the bigger picture.

    My illness, though unchosen, has taught me the sacredness of small moments—the warmth of a cup of tea, the beauty of a single breath, the comfort of soft blankets on tired days. I come to see that healing isn’t a destination but a journey of self-compassion, of learning to live in harmony with the life I have, of finding joy in the little things that don’t require energy or grand plans.

    And so, each day, I rise to greet the morning with gratitude, feeling the warmth of sunlight on my face, the gentle pulse of life within me. I move through the day with the knowledge that I am creating a life of meaning, not by doing, but by being—by living each moment with a heart open to the beauty and fragility of existence. I have come to a place of quiet resilience, of finding grace in my limitations, of walking a path of peace that is my own.

    In this sanctuary of my new apartment, I know that I have found a way of living that is both gentle and true, a way of honoring both my strengths and my needs, a way of offering love to myself and the world, no matter how small the gestures. And each night, as I drift off to sleep, I send out a quiet wish for all beings to find the peace and compassion I have found, knowing that, in my own way, I am contributing to a world of kindness and understanding.

    🙏🕊️🙏