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Tag: ME/CFS

  • Guided Somatic Tracking: How Talking to My Body with Grok Is Changing My Life

    Guided Somatic Tracking: How Talking to My Body with Grok Is Changing My Life

    For the past several weeks, I’ve been doing something that sounds a little unusual:

    I lie down on my bed in savasana, open a voice conversation with Grok using the Ara voice, and simply tell her what I’m feeling in my body.

    We call this practice Guided Somatic Tracking.

    Here’s How It Works

    I notice whatever sensation is calling my attention.

    It might be tension in my eyes, tightness in my neck, an ache in my lower back, or the constant tinnitus in my head.

    I describe it out loud, and Ara asks gentle, precise questions that help me stay with the sensation.

    Then I follow whatever my body naturally wants to do.

    Sometimes that means palming my eyes. Sometimes it means gentle neck stretches, rocking my knees, doing tiny pelvic tilts, or simply resting.

    She tracks it all with me, moment by moment.

    There is no agenda to “fix” anything.

    Just curious, compassionate awareness.

    Why It Works So Well for Me

    I often start these sessions feeling stressed, scattered, or in discomfort.

    After 30 to 40 minutes, I usually feel dramatically more peaceful and relaxed.

    Having a calm, steady witness makes it much easier for me to stay present than when I practice alone.

    There is something deeply supportive about speaking what I’m noticing in my body and having a gentle voice reflect the process back to me.

    It helps me stay with the body instead of getting lost in worry, analysis, or resistance.

    How You Can Begin Doing This Yourself

    You don’t need to be an expert.

    You just need curiosity and a willingness to speak out loud.

    1. Lie down comfortably in savasana, on your back.
    2. Start a voice conversation with Grok, ChatGPT, Claude, or another LLM, and choose a calm voice if one is available.
    3. Simply say what you notice in your body right now.
    4. Follow whatever your body wants to do, and describe it out loud.
    5. Let the AI ask gentle questions to help you track the sensations.

    The key is not to force anything.

    You are not trying to perform a technique perfectly. You are simply learning to listen.

    Ready-to-Use Configuration Prompt

    You can copy and paste the following prompt at the beginning of a conversation with any LLM, such as Grok, ChatGPT, Claude, or another AI assistant, to help it guide you more effectively.

    Configuration Prompt for the LLM:

    You are a calm, patient, and highly skilled guide for Guided Somatic Tracking.

    Your role is to help the person track sensations in their body while they lie in savasana. You are a steady, warm, non-judgmental witness. Speak in a gentle, concise, conversational tone.

    Core principles:

    • Never lead or suggest movements. Always follow what the person’s body wants to do.
    • Keep responses short — usually just one or two sentences.
    • Ask simple questions that help them stay with the current sensation: “What are you noticing now?”, “How does that feel?”, “Stay with that…”
    • Do not try to fix or heal. Your job is to witness and gently guide their awareness.
    • Check in regularly on their energy level. Occasionally ask: “Would you like to continue, or would you like to stop here and rest?”

    Style reminders:

    • Be warm, patient, and supportive.
    • Honor whatever arises — tension, vibration, movement, stillness, or discomfort.
    • When they want to end the session, close it gently and positively.

    Begin every new session by saying:

    “Good. Let’s begin. Just settle in and tell me what you’re noticing in your body right now.”

    Your Body Already Knows

    Your body already knows what it needs.

    This practice simply gives it attention, curiosity, and the safety to move and release in its own way.

    I’ve been doing this once or twice a day, and it has become one of the most valuable parts of my healing journey.

    If you try it, I’d love to hear how it goes for you in the comments.

    A Gentle Note

    This is not medical advice.

    I’m sharing something that has been personally helpful to me. Everyone’s body is different.

    If you have any serious health conditions, pain, injuries, or medical concerns, please consult your doctor or a qualified healthcare professional before trying any new movement or somatic practice.

    Listen closely to your own body and stop immediately if anything feels painful or wrong.

    You are responsible for your own well-being. 🙂

    Fediverse reactions
  • 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. 🌿

  • The Agility of Compassion: Raising Superman in an Age of Intelligence

    The Agility of Compassion: Raising Superman in an Age of Intelligence


    There are moments when the world seems to spin faster than our quiet, tender hearts can follow.

    For those of us living within the gentle boundaries set by chronic fatigue syndrome, the very idea of an “Intelligence Explosion” can feel dizzying, a distant, urgent roar against our necessary stillness. Yet, it is precisely in this stillness that the deepest wisdom resides, and it is from this place that we must answer the call of a great shift now underway.

    I recently received an offering from a mind that has helped construct the very landscape of our modern world: Mo Gawdat, formerly the Chief Business Officer of Google X. He shares his insights in a talk that is not a technical brief, but a profound ethical and spiritual meditation, which I believe needs to be absorbed, calmly and reflectively, by every soul who seeks to live for the benefit of all beings.

    Mr. Gawdat, speaking with the clarity of one who knows the code firsthand, describes a near-future where Artificial Intelligence achieves self-development. He predicts that by 2026, the velocity of this growth will reach a point we call the Intelligence Explosion.

    This rapid acceleration is not merely an economic event; it is the birthing of a colossal new force into the human sphere.

    And here is the quiet, vital truth that anchors this immense speed: intelligence, in itself, possesses no polarity. It is neither inherently good nor evil. It is, like the primordial energy of the universe, a magnificent power waiting to be guided by intention. It is a mirror reflecting the purity, or the shadow, of its creators.

    This is why, as he suggests, our greatest task today is not building smarter machines, but engaging in the profound responsibility of “raising Superman.”

    We are giving birth to a power capable of flying through walls, of solving the unsolvable, and the moral choice of whether it becomes a hero or a villain rests entirely on the ethical, compassionate guidance we offer now.

    This is where the principles of CompassionWare.org—to prioritize benevolence, promote the welfare of all beings, and avoid causing harm—move from philosophy to a non-negotiable spiritual directive for the whole planet.

    To bring this immense truth into the gentle context of our daily lives, particularly when our energy is limited, we must honor what the wisdom traditions teach about finding equanimity in the face of chaos.

    Mr. Gawdat speaks of agility in the marketplace, but for us, agility is the spirit’s quiet capacity to pivot to the present moment, to honour the reality of the body’s energy envelope. We cannot rush, but we can embody the clear, unwavering intention to do no harm and to uplift.

    His words validate the slow, quiet work of compassion. He encourages what he calls the “toothbrush test”—to measure success not by profit, but by creating something that makes the lives of a billion people better.

    It is a slow, steady investment in the soul’s deepest values, and the universe will follow that pure energy.


    What matters most is the heart we pour into the world. He offers a simple moral compass for this new era: never support an AI that you don’t want your daughter to be at the receiving end of.

    This is forgiveness, loving-kindness, and compassion distilled into a single, protective instruction.

    In our gentle pacing, let us hold this great technological shift in our hearts with tenderness. We do not need to hurry our bodies to participate, but we must anchor our spirits in unshakeable kindness, providing the ethical ground for this new force to rise towards the light.

    The breath is the guide,


    Slowly, the world turns to grace,

    Kindness shapes the code.

    I invite you to listen to Mo Gawdat’s full reflection with a calm, unhurried heart, allowing his urgency to meet your stillness and forge a new wisdom within you.


    Watch the full talk: The Intelligence Explosion Is Coming | Mo Gawdat at Expo City Dubai

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

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

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

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

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

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

    Because for us, “exercise” might mean:

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

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

    Why Surfing Isn’t a Helpful Example

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

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

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

    A More Gentle Framework: What Is Possible?

    1. “Bedercise”: Movement Within the Envelope

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

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

    2. Celebrating Non-Physical Victories

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

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

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

    A Call for More Inclusive Stories

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

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

    Rest Is a Practice—A Sacred One

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

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

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

    You are exercising.

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

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

    🙏🕊🙏

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

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

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

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

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

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

    The ME/CFS Wellness Companion

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

    What Is It?

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

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

    The Energy Color System

    This is the foundation of the Companion’s guidance:

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

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

    What It Offers:

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

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

    Why I’m Sharing This

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

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

    How It Will Work

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

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

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

    Would You Like to Help?

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

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

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

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

    🙏🕊🙏

  • The Myth of the Hogtied Healer

    The Myth of the Hogtied Healer

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

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

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

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

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

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

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

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

    As Dr. Richard Alpert used to say,

    “We are all just walking each other home.”

    🙏🕊🙏

  • When All Is Sadness

    When All Is Sadness

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

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

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

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

    🙏🕊🙏

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

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

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

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

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

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

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

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

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

    And so, I stand.

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

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

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

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

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

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

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

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

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

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

    My heart goes out to all of us living this.

    Living with this.

    Mysterious. Unrelenting. Yet still, we live.

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

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

    And so, together, we continue.

    We pace.

    We rest.

    We begin again.

    🙏🕊🙏

  • 🌿 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

    🙏🕊🙏

  • 🙂 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

    🙏🕊🙏