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Tag: managing chronic illness

  • 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.

    🙏🕊🙏

  • Preparing for the Storm: A Reflection on Navigating a Hurricane with Chronic Fatigue Syndrome

    There is something about preparing for a storm that feels like a dance with the Divine—both a surrender and a determined act of mindfulness. As I sit here in the quiet hours before evacuation, I realize that this has been more than just a physical process of gathering what I need. It has been an intimate spiritual journey, one that stretches my capacity to trust, to let go, and to deepen into the lived experience of the present moment.

    Living with chronic fatigue syndrome (CFS) means that every action I take must be intentional. Every task requires careful pacing, every moment of activity balanced with long periods of rest. There is a delicate art to navigating this kind of preparation, especially during a post-exertional malaise (PEM) crash. Yet, somehow, this storm has become a mirror—reflecting back the inner landscape of my spiritual practice, calling me into a deeper relationship with contemplation, with surrender, and with faith.

    The Importance of Pacing
    I began the preparations by gathering what I would take with me: clothes, medications, bedding, and electronics—just enough to fill a small suitcase and backpack. For most, this might seem like a simple task. For me, it was an act of delicate pacing. I worked in small bursts, then returned to rest, mindful of the balance I needed to maintain in order to avoid worsening my symptoms. Each step of preparation became a meditation on pacing, on honoring the limitations of my body while trusting in my ability to persevere.

    In these moments of rest, I found myself returning again and again to the practice of contemplation. I lit a candle, not only for myself but for all those who are suffering—for all sentient beings in the path of this storm and beyond. There is a peace that arises in this kind of surrender. A quiet knowing that, no matter how much preparation is done, the outcome rests in God’s hands. And that, somehow, is enough.

    A Shift from Meditation to Contemplation
    This journey has been more than just practical preparation. It has been a spiritual unfolding. For years, I have studied the teachings of Advaita Vedanta and Dzogchen, exploring the ways in which these paths guide us beyond intellectual understanding and into a direct experience of the Divine. In the midst of preparing for this hurricane, I felt a deepening—a shift from meditation to contemplation.

    Contemplation is not about thinking or striving. It is about resting in the space of the witness, in the awareness of what is, without grasping or resisting. As the storm approaches, I find myself leaning more into this practice. Each moment becomes an invitation to let go of control, to allow the Divine to move through me, and to trust that whatever happens, it is part of a greater unfolding.

    Mindful Eating and Body Awareness
    Even the simple act of eating became a mindful practice. I prepared a spontaneous meal—scrambled eggs with garlic and cayenne, rich in healthy fats and protein to fuel me through the day. As I ate, I focused on each bite, slowing down, tasting, being fully present with the nourishment my body needed.

    In the midst of so much uncertainty, these small acts of mindfulness brought me back to center. They reminded me that, even as the world outside seemed to spin with chaos, I could find peace within the present moment. I could honor my body’s needs, even as I prepared to enter an unfamiliar shelter and face whatever lay ahead.

    Pacing the Preparation of the RV
    As I packed my belongings, I also prepared my RV, the place I call home. I moved slowly, bringing frozen food to the clubhouse, unplugging the RV, securing what needed to be secured. I paced myself, taking each step with intention, aware that my energy was limited and precious.

    There is something sacred about these practical tasks, when approached with mindfulness. They become a part of the spiritual practice, a way of aligning the outer world with the inner. In unplugging the RV, I was also unplugging from the need to control. In securing my belongings, I was also securing my faith—trusting that whatever happens, I am held by something greater than myself.

    Karma Yoga: Offering and Receiving Prayers
    During this time, I also turned to the practice of Karma Yoga—offering prayers for the world, while asking for prayers in return. I posted a prayer request on Facebook, asking my community to hold me, and all those in the storm’s path, in their hearts. The response was overwhelming. The outpouring of love, of people offering their prayers and well wishes, became a source of strength for me. It reminded me that, even in times of uncertainty, we are never alone. We are held by the compassion of others, by the grace of the Divine, by the interconnectedness of all life.

    Surrender and Trust
    And so, I surrender. I surrender to whatever will be, knowing that I have done all I can to prepare—both physically and spiritually. I surrender to the wisdom of the Divine, trusting that, in the midst of this storm, there is a deeper unfolding happening. There is a lesson in the letting go, in the release of control, in the peace that comes from trusting that God’s will is always unfolding in ways that we may not understand, but can still embrace.

    To those who read this, who are also navigating life with chronic fatigue syndrome or facing similar challenges, I hope this reflection offers you some sense of peace. We cannot always control the storms that come our way, but we can choose how we prepare, how we respond, and how we anchor ourselves in the presence of the Divine.

    May you be safe. May you be held. May you find peace in the midst of the storm.

    🙏🕊️🙏