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Tag: self-care for chronic illness

  • Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

    Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

    A Gentle Reflection on Pacing, Rest, and Navigating the Challenges of Chronic Fatigue Syndrome

    There are days when the body speaks softly, a whisper of weariness that hints at the storm ahead. And though we move carefully, mindful of each step, there are moments when the smallest effort—a turn of the mind, a spark of emotion—awakens something deeper. This is the dance with post-exertional malaise, the hidden tide that comes and goes, often when we least expect it.

    Gentle Reminder: Take Care of Yourself

    This post is lengthy, and it’s important to honor your pacing needs. Feel free to read a little at a time, take breaks, and come back to it when you’re ready. Your well-being is paramount, even as you engage with information that supports your journey.

    In this slow unfolding, I’ve learned the art of listening. Not just to the body’s loud protests, but to the subtle shifts that rise like shadows before a dusk. It’s a practice, really—this gentle balancing act of life. Pacing myself through the hours, I find that it’s not about doing as much as I can, but rather, doing only as much as I must, and stopping long before the weight of fatigue pulls me under.

    Some days, I count my energy like a miser with gold, tucking it away in small corners, resting in the quiet between breaths. I know now that to keep moving without pause is to invite the flood, so I rest—not in surrender, but in reverence. It’s a kind of devotion, to honor these limits as something sacred, to see the necessity of stillness as part of the rhythm of being. I don’t always succeed. But when I do, I glimpse a peace that feels fragile, yet profound.

    And when the world presses in with its demands, I remind myself that it’s okay to say no, or not now. There is a quiet strength in bowing out, in knowing that tomorrow will ask more of me than today ever could, and I must be ready. There is also grace in understanding that not every task, not every moment, requires my full self. I can do less, and in doing less, I give myself more space to breathe, to be.

    There are the days after—the days when the fog of PEM descends like a heavy mist over the mind, the limbs. When it comes, I am learning not to fight it. I lie still, like a tree after the storm, gathering strength in the pause. I have found that recovery is an art, as delicate as anything else. Resting, not out of defeat, but out of wisdom, out of love for the body that has carried me through so much already. The act of resting becomes an offering of peace, a gift I give myself in this long, uncharted journey.

    And so, I move slowly, gently, always aware of the fine thread that connects exertion and ease, action and rest. I have begun to cherish the quiet moments of pause, the spaces where life still hums softly, even in the absence of movement. These are the moments when I remind myself that managing this strange, invisible storm is not about conquering it, but learning to live alongside it, to move with it as gracefully as I can. There is beauty here, too—a beauty in the stillness, in the small victories of simply being.

    In those moments, I find a sense of peace that is mine to keep. And in that peace, I remind myself that even on the hardest days, I am enough.And so, as I offer these thoughts, I send with them a quiet wish for your well-being. May you find moments of rest that nourish you deeply, and may the days of ease, however fleeting, linger softly in your memory. If you ever feel the weight of this journey pressing too hard, know that you are not alone.

    Dear friends,

    I know these days may feel heavier than usual. The storm outside has passed, but inside, your bodies may feel as though they’re weathering one of their own. Post-exertional malaise (PEM) comes like that—quiet and uninvited, a deep exhaustion that touches every part of you. Whether it’s the physical toll of surviving the hurricane or the emotional weight of the aftermath, you’re feeling it now, maybe more intensely than you have in years.

    Please know that what you are experiencing is valid. You’ve already shown such strength, simply by navigating these storms and their many demands. But right now, in this moment, the strongest thing you can do is rest. Not as a surrender, but as a way of caring for yourself in the most compassionate way possible. Rest, because your body is asking for it. Rest, because this is how you heal.

    Pacing is not easy when the world around you spins in chaos, but I encourage you to listen to the subtle signs your body gives. You don’t have to meet every demand or engage with every worry. It’s okay to step back, to breathe, and to honor your limits. In doing less, you are doing what is necessary to recover.

    If the fog of PEM feels too thick to see through, know that it will lift. Maybe not all at once, but in small, tender ways. There is stillness, there is peace, waiting for you on the other side of this exhaustion. You are not alone in this experience—many of us are moving slowly through these same waters, learning the rhythm of rest, of patience, of letting go.

    For now, take each moment as it comes. Let yourselves be. Let yourselves rest. And in that rest, know that you are enough. You are resilient. This, too, will pass.

    With all my warmth and understanding,
    Richard Silverman

    Feel free to leave your thoughts, your questions, or simply your presence here—I will meet you with understandingh and warmth. Together, in our shared quiet, we will honor the pace that life has asked of us.

    🙏🕊️🙏

  • In the Quiet of Healing: My Journey with the Parasympathetic Nervous System

    In the Quiet of Healing: My Journey with the Parasympathetic Nervous System

    Healing Through Rest: How the Parasympathetic Nervous System Can Support Recovery from Chronic Fatigue Syndrome

    In the aftermath of the recent hurricanes, Helene and Milton, I’ve felt post-exertional malaise weigh heavily on my body. The fatigue has been more than just physical—it’s emotional and mental, a deep, enveloping weariness that reminds me how fragile recovery can be. As I continue to mend from both the storms and the physical toll of chronic fatigue syndrome, I’ve found myself needing to return to the gentle practices that once brought me peace. The practices that help restore balance to my overstimulated system—those that invite rest rather than force recovery.

    Living with chronic fatigue syndrome is like walking on a delicate thread between exhaustion and healing. In these moments, the body feels like a battleground, constantly stuck in “fight or flight.” What I’ve learned, though, is that there’s another way—a softer, quieter way to approach healing. And this way begins with the parasympathetic nervous system.

    The Parasympathetic Nervous System: Our Body’s Quiet Healer

    The parasympathetic nervous system is often referred to as the “rest and digest” system, the opposite of the “fight or flight” response that dominates so much of my life with ME/CFS. While the sympathetic system pushes us to react, defend, and survive, the parasympathetic system invites us to slow down, to breathe deeply, to recover. It lowers heart rate, softens the breath, and gently restores the body to a state where healing is possible.

    For those of us with chronic fatigue, the parasympathetic nervous system is like a refuge, a space where our bodies can finally stop fighting and simply rest. But tapping into this refuge doesn’t come easily. It requires intention, mindfulness, and the willingness to let go of the push to “do” and embrace the power of simply “being.”

    Practices that Invite the Body to Rest

    Over time, I’ve gathered a small collection of practices that help me reconnect with my parasympathetic nervous system. One of the most powerful has been breathwork. By consciously slowing my breath—drawing in air slowly, holding the quiet pause between, and then releasing—I can feel my body begin to soften. It’s like a signal to my nervous system: “It’s safe. You can rest now.”

    Yoga Nidra has also become a vital tool in my recovery. It’s a guided form of meditation that allows me to rest deeply while staying present in the body. In this state, my body heals while my mind remains aware, a powerful reminder that rest is not the same as sleep. Restorative yoga, too, has been a way to surrender fully, each pose an invitation to soften into support, to let my body be held by the earth.

    And then there’s the Feldenkrais Method—gentle, mindful movements that teach me to listen to my body without forcing anything. These movements may be subtle, but they remind me that healing isn’t about big gestures or grand efforts. It’s about the small, quiet acts of listening to what my body truly needs in each moment.

    Learning to Listen

    As I move through these practices, I often find myself returning to Rilke’s words: “I am circling around God, around the ancient tower, and I have been circling for a thousand years, and I still don’t know: am I a falcon, a storm, or a great song?” Like Rilke, I am circling around the wisdom within me, learning the language of my body’s needs.

    Some days, I feel like the storm—torn by fatigue and pain. Other days, I am the quiet center, the stillness amidst the chaos. I am learning that healing isn’t about becoming something new or different. It’s about softening into who I already am and trusting that my body knows the way forward.

    An Invitation for Beta Testers

    If this resonates with you, I’d like to invite you to help beta test a new GPT model I’m developing. This model is designed to act as a relaxation coach, guiding you through practices like breathwork, Yoga Nidra, and gentle movements to activate the parasympathetic nervous system. It’s a tool I’m hoping will help others find the same peace and healing that these practices have brought me.

    This model is still in development, and I’m looking for a small group of people willing to try it out and provide feedback. If you’re interested, please reach out to me in the comments section with a few sentences about why this model interests you, how it could benefit your journey, and why you’d be interested in providing feedback. Your thoughts and insights will be invaluable as I continue to shape and improve it.

    Thank you for walking this journey with me.
    In the quiet, I’m learning to heal. May we all be well and safe. 🙏❤️🙏