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  • 10: Embracing Your Own Pace: The Conclusion of Our Post-Viral ME/CFS Exercise Journey

    10: Embracing Your Own Pace: The Conclusion of Our Post-Viral ME/CFS Exercise Journey

    Dear Friends,

    As we come to the conclusion of this series on exercising with post-viral ME/CFS, I want to offer you a heartfelt reflection on the journey we’ve been exploring together. It’s been a path of discovery, patience, and above all, compassion—compassion for yourself, your body, and your unique experience with ME/CFS.

    We’ve discussed everything from imagining workouts while lying in bed, to sitting in the parking lot of a gym, to slowly integrating light movements and mindful gym sessions. This spectrum of activity is not only about physical exercise but about honoring your current energy levels, emotions, and overall well-being.

    Your Unique Path of Wellness

    Living with post-viral ME/CFS, we understand that each day can be different. Some days, simply imagining a gentle workout, breathing mindfully, or visualizing movements while resting in bed might be the most appropriate and loving action for your body. On other days, maybe you can manage a shower, do a few dishes, or perhaps stretch or go for a very short, slow walk. These moments are victories. They are gentle movements toward health, and they count just as much as lifting weights or running miles.

    As you know, post-viral ME/CFS requires a delicate balance between rest and activity, and this balance changes depending on how your body is feeling from day to day. The most important practice we’ve emphasized throughout this series is listening to yourself, checking in frequently, and not pushing beyond what feels sustainable. Your body is guiding you, and it knows what it needs.

    From Visualizations to Gentle Movements

    Remember, if you are visualizing a workout or even imagining your body moving while lying down, this is still a powerful practice. It connects your mind with your muscles and breath, keeping your awareness sharp and your spirit engaged. Some days, this practice might feel like the perfect balance—bringing you peace, relaxation, and a sense of accomplishment without straining your energy.

    On other days, the thought of leaving the house or driving to the gym might feel achievable, even if the workout doesn’t happen. Simply being in that environment—sitting in the parking lot or spending time among others exercising—can offer motivation and encouragement. It’s an act of being present, of showing up for yourself without expectation.

    Every Step is Progress

    For those days when you feel you can engage in more, maybe it’s a small set of physical movements at home. Doing a few dishes, a brief stretching session, or just getting up to do light housework is meaningful. These activities are achievements. By mindfully engaging in these everyday actions, you bring a sense of calm and purpose to your day.

    Some of you may eventually reach a point where you feel strong enough to go to the gym or engage in a consistent exercise routine, but the key is to always move forward at your own pace—gently, kindly, and without judgment.

    Well Wishes for Your Journey

    The most important takeaway from this series is that exercise can mean many different things, and it’s essential that you define it in a way that respects your body’s unique rhythms and needs. Exercise isn’t about how much you can push or accomplish; it’s about how well you can listen to your body and respond to its cues with love and care.

    You are not alone in this journey. There is a community of people who understand, who are walking a similar path, and who honor each victory, no matter how small it may seem. Whether you are visualizing a workout from bed, taking a short walk, or simply taking the time to breathe mindfully, you are engaging in a practice of self-care and healing.

    I wish you strength, patience, and compassion on this path. May your journey be one of growth, self-love, and acceptance. Celebrate every step you take, and remember that wellness is not about perfection—it is about finding peace and balance within yourself.

    With heartfelt encouragement and well wishes,

    Richard Silverman

    🙏🕊️🙏



  • 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.

    🙏🕊🙏