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Tag: PEM management

  • Calling All Beings to Send Love and Peace: A Message for Our Community

    Harnessing Inner Peace: A Pacing Toolkit Tool for Those Living with ME/CFS or Long Covid

    As I reflect on the approaching Hurricane Milton, I’m reminded of the powerful moment when Jesus calmed the storm on the Sea of Galilee. His disciples, gripped by fear, watched as He simply said: “Peace! Be still!” and the storm settled. In this moment, I feel called to do the same—to access the peace of God within me and speak to the storm, “Peace! Be still.” I truly believe this is what Jesus asks of us, to practice this promise, and to remember that even faith the size of a mustard seed can move mountains.

    But this call to peace and stillness isn’t just about the external storm. As someone who lives with chronic fatigue, I know how much of a difference it makes to calm the storms within as well. The mental and emotional stress can often intensify symptoms like post-exertional malaise (PEM). So, I remind myself to relax my mind and heart, to let go of worry and concern, and to give my body the space it needs to heal.

    One of the tools I turn to in these moments is Pristine Mind Meditation, as taught by Orgyen Chowang in his book Pristine Mind: Journey to Unconditional Happiness. Pristine Mind is the pure, natural awareness that exists within all of us, untouched by thoughts or emotional turmoil. By resting in this space, I find that it helps me manage my symptoms, reduce stress, and pace myself more effectively. It’s an essential part of my pacing toolkit, allowing me to not only physically rest, but also calm my mind and emotions, preventing flare-ups of PEM and other symptoms.

    In this moment, I invite us all to join together in saying to the storm—whether it’s the physical hurricane or the inner storms we face—“Peace! Be still.” Let’s tap into the divine promise that’s always been ours and use the tools we have to cultivate peace, clarity, and healing within ourselves.

    Let us, from a place of faith and trust, send love to this storm and say to it: “Peace, be still.”

    🙏🕊🙏

  • Coping with ME/CFS in the Aftermath of Hurricane Helene: On-the-Spot Practices for Pacing and Recovery

    Rest now, breath by breath,
    Let each moment cradle you—
    And nourish your soul.

    As we recover from the aftermath of Hurricane Helene here in Florida, many of us are left not only dealing with physical damage and power outages but also with the internal toll such intense stress can take. For those of us living with chronic fatigue syndrome (ME/CFS), the impact can be particularly difficult, as our systems are already strained and now must cope with the post-storm chaos. This is a time when all of our skills for stress management, pacing, and self-care become essential—what Chögyam Trungpa might call “on-the-spot” practice.

    Understanding ME/CFS and Post-Exertional Malaise (PEM)

    Living with post-viral myalgic encephalomyelitis (ME/CFS) means managing a complex condition that affects multiple body systems, including energy production, the nervous system, and immune responses. One of the hallmark symptoms is post-exertional malaise (PEM), which refers to the worsening of symptoms after even small amounts of physical, emotional, or mental exertion. This could manifest as extreme fatigue, brain fog, muscle pain, increased sensitivity to noise and light, and a host of other symptoms that flare up after the body has been pushed past its limits.

    After a high-stress event like a hurricane, PEM can be easily triggered, making the recovery process even more difficult. The combination of exhaustion, nausea, sensory overload, and emotional stress all contribute to a heightened flare-up.

    On-the-Spot Strategies for Coping with Stress and PEM During Recovery

    Here are some pacing and stress management strategies that can be helpful as you recover from the storm:

    1. Cultivate the Witness

    Instead of trying to fix or fight the sensations in your body—like tinnitus, sensitivity, nausea, shakiness, or nervous system overwhelm—focus on observing them. This approach allows you to witness the intensity of your experience without adding the extra layer of resistance. Take a few deep breaths and simply notice the physical sensations, the loudness of the tinnitus, the shakiness in your limbs, the agitation in your mind, as if you’re watching a storm pass through.

    This is also an opportunity to remind ourselves of the Buddhist teaching of the second arrow. The first arrow is the physical or emotional pain we experience in a situation like this—our symptoms, the stress, and discomfort. The second arrow is the suffering we add on by resisting, judging, or wishing things were different. By simply observing the experience and letting go of the need to fix it, we avoid the second arrow of mental anguish. In this moment, it’s enough to just be with what is, without adding layers of judgment or frustration.

    1. Mindful Pacing

    Pacing is key to managing ME/CFS, especially during stressful recovery periods. Even though you may feel the need to push yourself—to clean up, reconnect with loved ones, or restore normalcy—it’s essential to honor your limits. Break tasks into the smallest chunks possible, rest frequently, and give yourself permission to not complete everything in one go.

    Physical pacing: Limit physical tasks to just a few minutes at a time, followed by equal or greater rest.

    Mental pacing: Engaging with recovery efforts, media, or news updates in small doses can prevent mental exhaustion.

    Emotional pacing: Allow yourself to step back from intense emotions when needed. Take breaks from conversations or situations that feel overwhelming.

    1. Tinnitus and Sensory Overload

    For many of us, stress exacerbates tinnitus, turning the ringing into an almost unbearable roar. One approach is to “lean into” the sound—not to fight it but to witness it, as mentioned earlier. Another option is to use low background sounds that are soothing to your system, such as nature sounds, white noise, or calming music, to soften the intensity of tinnitus. Remember, the goal isn’t to eliminate the sound but to cultivate a gentler relationship with it.

    1. Grounding Practices

    In times of heightened anxiety and post-storm disarray, grounding techniques can help calm the nervous system. Simple practices like feeling your feet on the floor, focusing on your breath, or using gentle touch (like placing a hand over your heart) can remind your body that you are safe in this moment, despite the external chaos.

    Breathing exercise: Try the 4-7-8 breath. Inhale for a count of 4, hold for a count of 7, and exhale slowly for a count of 8. This practice helps soothe the nervous system and bring a sense of calm.

    1. Resting in Stillness

    Though silence may feel elusive with tinnitus and nervous system overwhelm, there is a different kind of stillness available—the stillness of simply being aware. You don’t need to find literal quiet; instead, notice the quiet space that exists beneath all the sensations and noise. This is where your mind can rest, even when your body cannot.

    1. Pacing Your Recovery

    In the days following the hurricane, continue to pace yourself. Power outages, disrupted routines, and the emotional and physical toll of cleanup efforts can keep you in a heightened state of alert. Be mindful not to overdo it as you engage with recovery tasks, and remember that healing from PEM takes time. Even small tasks can be enough to push your body too far, so take frequent breaks and allow your body the space it needs to recover.

    Post-Hurricane Care for ME/CFS

    As we navigate the chaos left by Hurricane Helene, it’s vital to be gentle with ourselves and recognize the profound impact that stress can have on our health. Recovery is not just about cleaning up the physical aftermath but also giving our bodies the rest and care they need to heal from the exertion and stress.

    Take things moment by moment, and know that it’s okay to ask for help. Whether from neighbors, online support groups, or local resources, you don’t have to navigate this alone. The storm has passed, and now is the time to focus on restoration—both externally and internally.

    By integrating these on-the-spot practices into your routine, even during the stress of post-hurricane recovery, you can help your body manage the intensity of post-exertional malaise, tinnitus, and the other challenges that come with ME/CFS during such times. Stay safe and prioritize your well-being above all.

    Rest now, breath by breath,
    Let each moment cradle you—
    And nourish your soul.

    🙏🕊🙏

  • 1: Introduction to the Exercise Series: Gentle Movement for Body, Mind, and Spirit with Post-Viral ME/CFS

    Dear Friends,

    As we embark on this series exploring exercise and movement for those living with Post-Viral ME/CFS, it’s important to begin by acknowledging a simple truth: your path to wellness may look different from anyone else’s—and that is completely okay. The nature of living with Post-Viral ME/CFS requires us to redefine what exercise means, adapting to a new rhythm that is in harmony with our energy levels, symptoms, and the realities of daily life.

    Exercise in the traditional sense may bring up images of intense workouts, lifting heavy weights, or running miles. But for those of us living with Post-Viral ME/CFS, exercise might mean something entirely different. It might mean resting in bed, visualizing a workout, or simply getting to the gym parking lot for a few minutes on your way home from grocery shopping. It could mean gentle stretching in bed, doing a few light tasks around the house, or taking time to breathe mindfully.

    This series is meant to serve as a guide for embracing a new kind of exercise—one that is not about pushing limits or chasing goals but about nurturing your body, mind, and spirit through gentle movement, mindfulness, and above all, compassion.

    A Journey of Imagination, Gentle Action, and Acceptance

    In the first few posts of this series, we will explore the power of imagination and visualization. There may be days (or even weeks or months) when your body cannot physically engage in any form of movement, but that doesn’t mean you are disconnected from your body’s potential. Visualization is a powerful practice, one that allows your mind to engage with the idea of movement without needing to physically exert yourself. We’ll talk about how you can visualize workouts, stretching, or gentle movements while lying in bed, creating a mental connection that keeps your awareness sharp without triggering post-exertional malaise.

    We’ll also talk about small steps—like driving to the gym and sitting in the parking lot, even if you don’t have the energy to go inside. There’s value in simply getting closer to the idea of movement. Over time, you might find yourself taking steps further, maybe walking into the gym, sitting in the environment, and just absorbing the energy of people moving around you.

    Titrating Activity: Finding Balance and Progress

    As we move forward in this series, we’ll explore how to approach physical activity in a way that’s both mindful and sustainable. Small, controlled movements—whether they’re simple stretches at home or slow, mindful exercises at the gym—are a way to begin reconnecting with your body without overstepping your energy limits. Remember, movement for us is a delicate balancing act, and we’ll emphasize the importance of checking in with yourself frequently and avoiding the temptation to push too hard.

    This series isn’t about getting you to the point of running marathons or lifting heavy weights. It’s about honoring where you are on any given day. Some days, the most compassionate action you can take is visualizing movement while lying in bed. Other days, you might find that you’re able to move a little more—maybe stretch gently, walk for a few minutes, or do light movements with a resistance band. Every step, no matter how small, is progress.

    Exercise as Self-Care, Not Striving

    Throughout this series, we’ll emphasize that exercise is not about striving for perfection or chasing after big milestones. It’s about tuning into your body, listening to its needs, and responding with kindness. Exercise, in this new sense, is about moving in harmony with your energy and creating a relationship with your body that’s built on trust and compassion.

    This journey is personal, and each day will bring different challenges and opportunities. The important thing is that you approach this path with an open heart, celebrating the small victories and honoring the moments when rest is the best thing you can offer yourself.

    As we conclude this introduction, I want to emphasize that this series is not meant to be a strict, linear guide. What I’ve shared is simply how the process unfolded for me, step by step, over the course of years. You may find that your own journey takes a different path. Perhaps you’ll stay with the visualization step for days, weeks, or even months before feeling ready to move forward. You may visit the gym parking lot a few times, or perhaps many times, before stepping inside.

    For me, it took over two years—before I was able to enter the gym and engage in light, respectful exercise. At first, I could only manage it once in a while, then eventually once a month, and after a few more years, I was sometimes able to go twice a month. A few years later, I found myself exercising once a week, but not always. I still need to be careful to honor my body’s limits and energy reserves so as not to trigger PEM. Over the years I have been smoothing out the valleys and hills.

    Please know that this series is not a guideline to be followed strictly but a set of ideas to explore at your own pace. The path of recovery, movement, and exercise for someone living with Post-Viral ME/CFS is unique to each individual. My hope is that my experience offers some encouragement and helps you find your own rhythm and approach as you reconnect with your body. It is my sincere wish that this series will be of benefit to you.

    In the final post of this series, we’ll reflect on the entire journey—offering you a comprehensive conclusion, a reminder that this is an ongoing process of listening, adapting, and finding peace with where you are. Until then, I invite you to take each post as a gentle nudge toward reconnecting with your body, whether that’s through imagination, small actions, quiet reflection or visiting a gym.

    Looking Ahead

    Next up, we’ll talk about imagining movement as the first step in reclaiming your relationship with exercise. Visualization is a powerful tool, and I’ll show you how to use it as a way to reconnect with your body without draining your energy. Even when physical movement feels impossible, the mind can still engage in the process of healing and renewal.

    Thank you for joining me on this journey, and I look forward to walking this path together.

    With compassion and gentle encouragement,
    Richard Silverman

    🙏🕊️🙏