Home Page: Inspirations of Love and Hope

Tag: chronic illness recovery

  • 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. 🌿

  • 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. 🙏❤️🙏

  • 9: Listening to Your Body: A Compassionate Approach to the Leg Press for Post-Viral ME/CFS

    9: Listening to Your Body: A Compassionate Approach to the Leg Press for Post-Viral ME/CFS

    When living with Post-Viral ME/CFS, it’s essential to remind ourselves that our journey with exercise is not measured by how much we do, but by how gently we honor the unique rhythms of our bodies. This is especially true when it comes to engaging in physical activities like the Leg Press Machine. Today, we’ll explore how to mindfully approach this exercise in a way that supports both your physical and emotional well-being.

    Some days, the most valuable thing you can do is simply imagine going to the gym or just driving to the parking lot without even stepping inside. And that is okay. It’s important to recognize that each step, no matter how small, is progress in your journey toward reconnecting with movement.

    Preparing for Movement, with or without Weights

    The Leg Press Machine can help gently engage the lower body muscles—the quadriceps, hamstrings, and glutes—in a supportive and controlled way. However, as always, we want to begin with a deep check-in with ourselves. How are you feeling today? Are you carrying any fatigue from the day or week? Is your body asking for movement, or is it requesting rest?

    Before starting, consider that visualization can be just as powerful on days when physical energy is limited. On days when your body needs more rest, imagine yourself using the leg press machine while lying in bed. Visualizing the movement—feeling your legs pushing away, and imagining the breath and strength flowing through your body—can still provide a sense of connection and engagement.

    The Smallest Effort is Enough

    If today happens to be a day when you’re feeling able to visit the gym, remember that the smallest effort is enough. Maybe just getting into the car and driving to the parking lot is the accomplishment for the day. You don’t have to step inside the gym. Instead, sit in the parking lot, breathe deeply, and feel a sense of accomplishment. That in itself is an act of healing and self-care. You’ve honored your intention to engage with movement, and that is enough.

    If you’re feeling a little more energy, and you’re ready to step inside the gym, remember this: the goal is not to push through your limits but to respect them. If all you do is sit on the leg press machine for a few minutes without pressing any weight, you are still reconnecting with your body. Some days, it’s not about completing a set—it’s about showing up, about being present with yourself and your energy, and that’s more than enough.

    Using the Leg Press: Gently Engaging the Lower Body

    When you’re ready to engage with the Leg Press Machine, begin by adjusting the machine to its lightest setting. Even if you start with no weight at all, the simple act of placing your feet on the platform can feel empowering.

    Sit back and adjust your feet so they are shoulder-width apart, flat on the platform. Take a moment to breathe. Let your back press gently against the seat, feeling supported. As you inhale deeply, imagine your breath flowing down to your legs, filling them with a soft sense of energy.

    Exhale slowly, and as you do, gently press your feet into the platform, extending your legs slightly. This is not about pushing to your limit. Even a small movement is valuable. Notice how your body responds. Feel the gentle engagement of your legs, the stretch in your muscles, the connection between your breath and your body.

    If you only press the platform once or twice, that is absolutely enough. Pause and check in with yourself. How are you feeling? Is your body asking for more movement or more rest? Honor what your body is telling you. Remember, today is not about how many repetitions you do—it’s about how mindfully and compassionately you approach your practice.

    The Power of Visualization

    On days when you are feeling more fatigued or simply unable to make it to the gym, practice visualizing the leg press movement. You can do this while resting in bed, imagining the motion as vividly as possible. Feel your legs engage as you push against the invisible platform, feel your breath flowing in and out, and sense the energy within your muscles.

    Visualization offers a gentle way to stay connected to your body, even when physical movement isn’t possible. It reminds you that you are still practicing, still showing up for yourself, and still making progress.

    Rest, Reflect, and Celebrate Small Wins

    After your time on the Leg Press Machine or after a moment of visualization, take a moment to rest and reflect. Celebrate the small wins—whether it was simply making it to the parking lot, sitting on the machine, or completing a few gentle presses. Every effort counts, and every moment of mindfulness is a step forward.

    Post-Viral ME/CFS often teaches us the importance of balance and patience. Some days, even weeks or months, may pass where going to the gym is out of reach. And that’s perfectly okay. Your practice may look different on different days, but each experience, whether it’s sitting in the parking lot, visualizing in bed, or using the machine, contributes to your overall journey toward healing.

    Moving Forward with Grace

    As you continue to explore mindful movement, remember that there is no rush. You are not in competition with anyone—not even with your past self. The goal here is gentle engagement, compassionate movement, and the understanding that rest is just as important as exercise.

    Your body is your guide. On days when it asks for stillness, listen to it with love and acceptance. On days when it asks for gentle movement, offer it the care and attention it deserves. Each small step you take is part of your healing journey, and every effort, no matter how small, is a testament to your commitment to self-care.

    Next Post Preview: Concluding Thoughts on Gentle Exercise for Post-Viral ME/CFS

    As we come to the conclusion of this series, we’ll reflect on the journey we’ve taken together, from imagining movement while resting, to gently re-entering the gym space. We’ll discuss how these small, mindful steps can serve as a foundation for a compassionate relationship with exercise, honoring your body’s limits while encouraging progress. In this final post, we’ll explore how to celebrate your victories—no matter how small—and how to continue nurturing your fitness journey with kindness and patience.

    🙏🕊️🙏



  • 5: Entering the Gym: Being in the Space Without Pressure

    After driving to the gym and sitting in the parking lot, you might begin to feel ready for the next step: entering the gym itself. This can feel like a significant milestone, especially for someone managing Post-Viral ME/CFS. Walking into the gym, even without the intention to exercise, is a way to gently integrate yourself into the environment, allowing your body and mind to become familiar with the space again without the pressure to perform.

    In this blog post, we’ll explore how to take this step mindfully—being in the gym without the expectation of working out, but simply to be present in the space. Whether you’re reading a book, sitting in a quiet area, or just observing others working out, this step helps rebuild your relationship with movement in a way that feels safe and manageable for your body.

    Why Entering the Gym Matters

    Much like sitting in the parking lot, walking into the gym is an act of self-compassion and intentional presence. For many with Post-Viral ME/CFS, just being in the gym may stir up emotions—memories of when working out was easier, or feelings of frustration at current physical limitations. However, by entering the space without the expectation to exercise, you are creating a new relationship with the gym—one that is patient, understanding, and attuned to where your body is right now.

    Here are some reasons why entering the gym can be a powerful step forward:

       •   Familiarizing Yourself with the Space: Being inside the gym, surrounded by equipment and other people working out, helps to make the environment feel more familiar. By simply sitting in the space, you reduce the sense of intimidation that may be associated with exercise.
       •   Creating Positive Associations: Without the pressure to work out, you can begin to form positive associations with the gym. You’re not here to push yourself or over-exert; you’re here to relax and allow your mind and body to re-engage with the idea of movement in a gentle way.
       •   Reclaiming the Gym on Your Own Terms: You are showing yourself that the gym can be a space for all kinds of experiences—not just high-intensity workouts. It can be a place for mindful observation, relaxation, or simply being present. You’re creating your own relationship with the space, on your own terms.

    How to Approach Being in the Gym Without Working Out

       •   Set a Gentle Intention: Before you enter the gym, remind yourself that you are not there to exercise. Instead, you are there to simply be present in the space. Whether you spend 10 minutes or an hour inside, the focus is on creating a sense of calm and comfort.
       •   Find a Quiet Spot: Once you enter the gym, find a quiet area where you can sit and observe. Many gyms have lounges or seating areas where you can relax. Bring a book, listen to calming music, or simply sit quietly and take in your surroundings.
       •   Observe Without Judgment: As you sit in the gym, you may notice people working out around you. Allow yourself to observe without judgment. You don’t need to compare yourself to others or feel like you need to participate. Instead, simply appreciate the atmosphere and remind yourself that you are taking an important step for yourself.
       •   Engage in Mindful Breathing: While you sit, take a few moments to practice mindful breathing. Focus on your breath, allowing yourself to settle into the moment. This practice of mindfulness helps to calm any anxiety or frustration that may arise, bringing your focus back to the present.
       •   Visualize Future Steps: If it feels comfortable, you can begin to visualize yourself taking the next steps. Perhaps you imagine yourself stretching or using light weights, or simply walking around the gym in the future. These visualizations can help to prepare your mind and body for future progress, without the pressure to act on them just yet.
       •   Acknowledge the Accomplishment: After you leave the gym, take a moment to acknowledge the accomplishment of being in the space. Even if you didn’t work out, you’ve taken a step toward rebuilding your relationship with exercise. Celebrate that achievement.

    Psychological and Emotional Benefits

    Being inside the gym, even without working out, offers significant psychological and emotional benefits. Here’s how this practice can support your overall well-being:

       •   Reduces Anxiety: By removing the pressure to exercise, you reduce the anxiety that can be associated with the gym. You’re creating a calming experience in a space that may have once felt intimidating.
       •   Promotes Self-Compassion: Entering the gym without expectation fosters self-compassion. You’re allowing yourself to move at your own pace, respecting your body’s current limits, and nurturing your relationship with physical movement.
       •   Builds Confidence: Every time you enter the gym and sit quietly, you’re building confidence. You’re showing yourself that you can be in the space without pushing beyond your limits. This helps to reframe the gym as a positive, supportive environment.

    Expanding Your Practice

    As you become more comfortable being in the gym, you might feel ready to take the next step, which could involve light stretching or gentle movement. You might bring along a yoga mat and practice simple seated stretches or even lie down in a quiet corner and focus on deep breathing exercises.

    You might also begin to explore light equipment. For example, the Lat Pulldown Machine, is a great piece of equipment for gently engaging your upper body muscles. With minimal weight and slow, mindful movements, this exercise can be adapted for people managing Post-Viral ME/CFS. Always check in with your energy levels and make sure you’re working well within your limits to avoid PEM. We’ll talk more about using gently exercise machines in a future post.

    For now, the simple act of entering the gym and being present is a significant achievement for someone living with Post-Viral ME/CFS. You’re showing yourself that the gym doesn’t have to be a place of pressure or exertion, but rather a space where you can move at your own pace, reclaiming your relationship with physical movement.

    As you continue to practice being in the gym without working out, you’ll find that your comfort and confidence grow. Each step forward—no matter how small—is a step toward rebuilding your fitness in a way that’s gentle, mindful, and compassionate.

    Next Post Preview: Gentle Movement and Stretching in the Gym
    In the next post, we’ll explore how to incorporate gentle movement and stretching into your gym routine. We’ll discuss ways to start moving again with minimal exertion, focusing on exercises that are manageable and restorative for those living with Post-Viral ME/CFS.

    🙏🕊️🙏



  • Finding Balance: A Gentle Guide to Pacing with ME/CFS

    Question: What’s the best way to pace myself with ME/CFS?

    Answer: Pacing with ME/CFS is all about finding balance—managing your energy levels to avoid triggering post-exertional malaise (PEM) and staying within your “energy envelope.”

    As you read this post, please remember that pacing applies here too. There’s a lot of information, and it’s important to honor your capacity. Consider reading a little, then resting, and coming back to it when you feel ready. There’s no need to read and understand all of this at once. Take your time, and be gentle with yourself as you move through it.

    Here are some practical steps to help you pace yourself:

    1. Understand Your Energy Envelope

    Think of your energy levels like a battery. You have a limited amount of energy available each day. The goal is to stay within this limit to avoid overexertion and the subsequent crash.

    Reflect on Your Energy: You might find it helpful to reflect on your energy levels each day—perhaps by jotting down your experiences in a journal or simply observing what drains your energy and what helps you recharge. Noticing these patterns over time can offer insights into how best to care for yourself.

    1. Break Tasks Into Smaller Steps

    Breaking down activities into smaller, manageable steps can make things feel less overwhelming. You might try doing just 10 minutes of a task, resting, and then returning to it later if you feel up to it.

    Pause Often: Consider taking breaks before you feel tired. These pauses are a way of nurturing your energy, helping you avoid pushing yourself too far and risking PEM.

    1. Alternate Rest and Activity (The 50% Rule)

    If you’re uncertain about your limits, it might help to do only 50% of what you think you can manage. This approach offers a gentle buffer, allowing you to stay within your energy envelope without feeling stretched too thin.

    Balance Rest and Activity: You could try balancing periods of activity with rest. For instance, if you spend 15 minutes on a task, consider taking 15-30 minutes of rest afterward—even if you feel like you could keep going.

    1. Prioritize Essential Tasks

    Focus on tasks that are most important or meaningful. Let go of non-essential activities when you’re having low-energy days.

    Use the “3 Ps”:

    Plan:

    Organize your day to spread out energy-draining activities.

    Prioritize:

    Decide what’s most important.

    Pace:

    Slow down, take breaks, and listen to your body.

    1. Adjust for “Good Days”

    On days when you feel better, it’s tempting to do more. But this can lead to overexertion and worsening symptoms later. Stick to a consistent routine and avoid the boom-and-bust cycle where you overdo it one day and crash the next.

    1. Listen to Your Body’s Cues

    Pay attention to signs of fatigue, brain fog, or any symptoms. These are indicators that it’s time to rest. Don’t wait until you feel completely drained.

    1. Use Energy-Saving Tools and Techniques

    Find ways to make daily tasks easier, like sitting down while cooking or using adaptive tools to conserve energy. Even small adjustments can make a big difference in preventing overexertion.

    1. Be Kind to Yourself

    ME/CFS pacing takes time and practice. Be patient with yourself, and understand that setbacks happen. Rest is not a sign of weakness, but a necessary part of managing your energy.

    The goal of pacing is not to push through but to balance activities with rest so you can maintain stability and, over time, potentially expand what you’re able to do without triggering a crash.

    Remember, your well-being is not a race or a challenge to conquer. It’s a journey of listening to your body and honoring its needs, step by step. ❤️

    If you ever feel unsure, working with a healthcare professional familiar with ME/CFS can help tailor pacing to your unique needs.

    🙏🕊️🙏

  • 4: Sitting in the Gym Parking Lot: A Gentle Step Toward Physical Movement

    For many people living with Post-Viral ME/CFS, even the thought of physical exercise can feel overwhelming. The body is a delicate balance, and pushing it beyond its limits can trigger post-exertional malaise (PEM)—that all-too-familiar crash after exertion that leaves you feeling more fatigued and symptomatic than before. Yet, there may still be a desire, a pull to move your body, to regain some sense of vitality through gentle movement or exercise.

    In this blog post, we’ll explore a step that may seem simple on the surface, but which can have profound psychological and emotional benefits: driving to the gym and sitting in the parking lot.

    Yes, you read that right. Sitting in the parking lot can be a significant milestone on your path toward physical movement. For those with Post-Viral ME/CFS, any task that involves leaving the house can feel like an accomplishment, and the gym itself can feel like a daunting place. This practice of just being in the environment, without the pressure to perform or exert yourself, is an important step in the journey toward reclaiming your fitness—without pushing beyond your energy limits.

    Why the Parking Lot?

    Let’s take a moment to recognize that even small steps deserve celebration. If you’ve been living with moderate to severe Post-Viral ME/CFS, leaving the house might be rare. Driving to a location, let alone one associated with exercise, can feel emotionally and physically taxing. The parking lot becomes a symbolic space—a way to re-enter the fitness world gently, without expectation, without pressure, and without straining your energy reserves.

    Here’s why it’s a useful and transformative step:

    Driving to the gym—even if you don’t leave the car—begins the process of mentally reconnecting with the idea of exercise. It shifts the gym from being a space of intimidation or unattainable goals into a place of possibility.

    Simply being in the environment where exercise happens allows your mind and body to reacclimate to the space. It’s a small exposure to the world of fitness without forcing yourself into action.

    For many with Post-Viral ME/CFS, exercise spaces may come with a sense of guilt or frustration. By sitting in the parking lot, you’re reclaiming that space on your own terms. You’re telling yourself, “I’m here, in my own way, and I’m doing what’s possible for me today.”

    How to Practice Sitting in the Gym Parking Lot

    This practice is about taking the pressure off. It’s not about forcing yourself to take the next step but rather creating a safe and comfortable relationship with exercise spaces again.

    Choose a day when you feel ready. On a day when you have a bit more energy, consider driving to the gym. Remind yourself that going into the gym is not the goal—you’re simply taking a small step toward engaging with the space.

    Once you arrive in the parking lot, find a space where you can sit comfortably. Take a moment to relax in the car. You might bring a book, listen to calming music, or practice mindfulness or breathing exercises while you’re there.

    Take in the sights and sounds around you. Notice people walking into the gym, coming out after their workouts. Pay attention to the energy of the place, without feeling the need to participate just yet.

    Whether it’s five minutes or half an hour, allow yourself to sit in the parking lot for as long as it feels supportive to your mental and emotional state. There’s no need to go beyond your limits—this is about engaging at your own pace.

    After you’ve finished, acknowledge this accomplishment. Driving to the gym and sitting in the parking lot is a step, and it deserves recognition. You’ve taken a step toward reconciling your relationship with exercise, and that’s no small feat.

    Psychological and Emotional Benefits

    For individuals with Post-Viral ME/CFS, the mental and emotional barriers to exercise can be as significant as the physical ones. The fear of triggering a flare-up, the memories of past physical limitations, or the frustration with the body’s current state can make the idea of working out emotionally loaded.

    By driving to the gym without the pressure to work out, you can begin to disarm these emotional triggers:

       •   Reducing Anxiety: Just being in the space without the expectation to perform can reduce the anxiety associated with exercise. It gives you a chance to simply be present in the gym’s environment without pushing yourself.
       •   Reconnecting with the Gym: Over time, you might begin to feel more comfortable and familiar with the gym again. Positive associations can start to replace any feelings of guilt or inadequacy that might have previously arisen when thinking about exercise.
       •   Empowering Yourself: Every time you drive to the gym and sit in the parking lot, you are taking control of the experience. This step is about doing what you can, rather than focusing on what you can’t. This empowerment builds a sense of self-efficacy and confidence.

    Expanding the Practice

    As this practice becomes more familiar, you might start to feel ready to take the next step. That could mean simply walking into the gym, sitting down in a public area with a book, or watching others work out while you relax. Again, there’s no pressure to work out at this stage. Your presence in the space is the goal.

    From here, you might progress to stretching in a quiet corner or using a very light machine that feels comfortable and within your limits. You’ll be the best judge of when and how to expand your practice, and it’s important to always check in with your body and your energy reserves before making any decisions.

    Final Thoughts: Celebrating Small Victories

    The practice of driving to the gym and sitting in the parking lot may seem small, but it’s a powerful act of self-compassion and patience. It’s an acknowledgment that your journey with Post-Viral ME/CFS requires a different pace, a more mindful approach to fitness.

    You are already moving forward, even if the steps feel small. Celebrate these victories, and trust that as you continue to engage in this practice, you will gradually find the strength and confidence to engage with exercise in a way that’s right for your body.

    Next Post Preview: Entering the Gym—Being in the Space Without Pressure

    In the next post, we’ll explore how to take the next step: entering the gym. We’ll discuss how to create a positive and calming experience by being in the gym environment without the pressure to work out, and how to continue building a healthy, patient relationship with your fitness journey.

    🙏🕊️🙏



  • 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.

    🙏🕊🙏

  • Imagining Movement: An Introduction to Gentle Exercise for Those Living With Post-Viral ME/CFS

    When living with post-viral ME/CFS, exercise can seem like an impossible dream. For many, the simple act of getting out of bed can take monumental effort, let alone the thought of stepping into a gym. However, there are ways to gently integrate physical activity into your life without exacerbating symptoms—and these steps don’t necessarily start with physical movement. Sometimes, they begin in the mind. This blog series will explore how to approach fitness slowly and mindfully, honoring the energy envelope you have, while cultivating a connection with your body through imagination and gentle progression.

    Step 1: Imagining Your Workout While Resting

    There was a time when I could only imagine going to the gym. Lying in bed, too fatigued to move, I would close my eyes and visualize walking through the doors, feeling the cool air, hearing the gentle hum of machines, and seeing people engaged in their routines. While my body was still, my mind could practice moving. This visualization became the first step in reclaiming my relationship with exercise.

    When you’re living with moderate to severe post-viral ME/CFS, physical movement may not always be possible, but visualization is a powerful tool. Research has shown that imagining movement can activate similar pathways in the brain as actual movement. This means that even on days when physical movement is impossible, you can begin your fitness journey by lying down and visualizing yourself working out. Imagine yourself lifting weights, stretching, or walking on a treadmill at a slow, gentle pace.

    This is a form of mental exercise that can help reduce the fear or mental barriers around exercise while helping you develop a sense of routine. It’s about creating a safe space where movement feels possible—even if it’s just in your mind.

    Step 2: Visiting the Gym Without Working Out

    As my energy increased slightly, my next step was simply driving to the gym. But I wasn’t going in just yet. I would park in the lot and sit in my car, looking at the building and feeling the atmosphere from the outside. This might sound small, but this was a victory in itself.

    For those with post-viral ME/CFS, even getting dressed and leaving the house can be an accomplishment. Driving to the gym without the pressure to perform is a gentle way to integrate fitness back into your life. By sitting in the parking lot, you are allowing your mind and body to adjust to the idea of visiting the gym as a place of healing, rather than a place of exhaustion.

    On the next level, once I became more comfortable, I would enter the gym—but not to work out. Instead, I would bring a book, find a comfortable spot, and simply spend time in the environment. I was surrounded by the energy of others exercising, but without the pressure to join in. Being in that space helped me to feel like part of a community, even if my workout looked different from everyone else’s.

    This slow exposure allowed me to rebuild my confidence and develop a positive association with the gym, where it became a place of nourishment rather than stress. If you’re living with post-viral ME/CFS, these small steps are monumental and can be celebrated as progress.

    Step 3: Moving with Mindfulness

    Eventually, there came a day when I could engage in some light movement—whether it was stretching, walking slowly on a treadmill, or using a set of light dumbbells. By this point, my relationship with exercise had changed. I no longer approached it as something that required hard effort, but instead as a way to gently connect with my body and breath.

    If you are ready to move beyond visualization and sitting at the gym, the key is to start slow and be mindful of your energy limits. Use light weights or resistance bands if you have them at home, or practice simple, controlled movements that a physical therapist may have recommended. The goal here is not to push your limits, but to move with awareness and take breaks as needed.

    Step 4: Having Equipment at Home

    If getting to the gym is not feasible due to symptoms or energy limits, you can still work on gentle movement at home. Investing in a few basic tools like resistance bands or light dumbbells allows you to incorporate mindful exercise into your day. Start with very low repetitions and listen to your body—your energy level may change from day to day.

    Using these tools at home creates a bridge to more regular movement, without the added strain of commuting or dealing with external stimuli. It also gives you more control over your environment, which is especially important for those dealing with fluctuating energy levels.

    Progress, Not Perfection

    For those with post-viral ME/CFS, it’s essential to remember that progress is deeply personal and non-linear. Some days, even the thought of exercise may be overwhelming, and that’s okay. Other days, simply walking into the gym or using a resistance band at home might feel like a huge accomplishment. Both are equally valid.

    Final Thoughts: A Compassionate Approach to Exercise

    Living with post-viral ME/CFS means that you must approach fitness with compassion and patience. Your fitness journey doesn’t have to look like anyone else’s. It doesn’t have to involve heavy weights or hours on a treadmill. It can start with visualization, gentle exposure, and mindful movement, taking small steps that respect your body’s limits while creating space for healing and growth.

    In this blog series, we’ll explore various exercises and practices that can help you engage with fitness at your own pace—whether it’s simply imagining a workout, sitting in a gym parking lot, or engaging in light movements with tools you have at home. Each step is progress, and each step brings you closer to a place of balance between body, mind, and spirit.

    Next Post Preview: The Benefits of Visualization in Exercise for Post-Viral ME/CFS

    In the next post, we’ll delve deeper into the power of visualization as an exercise tool—how it can create new pathways in the brain, reduce anxiety around physical activity, and serve as a foundational practice on your fitness journey.

    🙏🕊️🙏