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Tag: managing ME/CFS

  • Embracing Mindfulness on the Journey of Chronic Fatigue Syndrome ME/CFS

    Embracing Mindfulness on the Journey of Chronic Fatigue Syndrome ME/CFS

    For those of us living with post-viral Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), mindfulness can be an invaluable tool. When energy feels scarce and symptoms overwhelming, mindfulness offers a gentle, non-judgmental way to relate to our experience. It’s not about forcing ourselves to be positive or ignoring the very real challenges we face, but about creating space within our hearts and minds for what is happening right now. It’s about simply being present with our thoughts, emotions, and sensations without adding layers of frustration or resistance.

    I remember early in my practice when I first realized how much energy I was spending resisting my illness. I fought against it, mentally and emotionally, with every fiber of my being. That resistance, though understandable, made me sicker. But over time, through the teachings of mindfulness, I began to soften that resistance and learned to sit with my experience as it was—without the layers of anger or frustration. That shift changed everything.

    One of the most beautiful things mindfulness teaches us is how to cultivate self-compassion. It allows us to look at ourselves with kindness, to acknowledge that we are doing the best we can, given the circumstances. Chronic illness can often bring feelings of isolation, inadequacy, or even guilt. But through mindful awareness, we can learn to treat ourselves as we would a dear friend—with warmth, understanding, and patience.

    In my own journey, self-compassion became a practice of offering myself a soft place to land amid the storm of chronic fatigue. I learned that it was okay to have limits and that pacing was not a failure but an act of wisdom. Through mindfulness, I could honor the ebb and flow of my energy without judgment, allowing myself to rest when needed and cherish the moments of peace when they arose.

    The spiritual path of transforming suffering into enlightenment has been a guiding light for me over the years. Drawing from the teachings of Buddhist masters like Dodrupchen Jigme Tenpe Nyima, I’ve come to see how our relationship to suffering—and to happiness—shapes our inner world. For so long, my relationship to ME/CFS was fraught with resistance, and that resistance was its own kind of suffering. But through mindfulness, I’ve slowly learned to soften into my experience, to meet it with equanimity, and to allow each moment to become an opportunity for growth.

    Mindfulness is not a cure for chronic fatigue syndrome, but it offers a way to live with greater peace and resilience. It is a daily practice of acceptance, of meeting ourselves where we are, and of nurturing a sense of compassion for the journey we are on. Whether you are new to mindfulness or have been practicing for years, there is always room to deepen this practice, to cultivate a gentle presence that supports healing, both emotionally and spiritually.

    For me, the journey is ongoing, but each step I take is filled with the intention that this path is not just for my own peace and well-being but for everyone whose lives I touch. Together, as we cultivate more mindfulness and self-compassion, we build a bridge toward greater understanding, peace, and inner liberation.

    A Haiku on Self-Compassion

    In stillness, we rest,
    Soft whispers of kindness grow,
    Healing in our hearts.

    I hope these words bring solace, support, and a reminder that we are not alone on this journey. Together, we are cultivating a way of being that embraces both the challenges and the beauty of life, one mindful breath at a time.

    🙏🕊️🙏

  • 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.

    🙏🕊️🙏



  • Finding a Good Doctor for Chronic Fatigue Syndrome: A Personal Journey

    Finding the right doctor, who accepts insurance, when you have Chronic Fatigue Syndrome (ME/CFS) can be a daunting task. Many of us have had experiences with doctors who are dismissive, disrespectful, and ignorant about our condition. Over the years, I’ve had to fire several doctors who didn’t meet my needs, and I know I’m not alone in this struggle.

    My Experience with Kaiser

    I was with Kaiser for seven years, and the doctors I encountered were all horrible, disrespectful, and ignorant about ME/CFS. It was a challenging and frustrating time, but it taught me a valuable lesson: we have the right to fire doctors who don’t understand or respect our condition. I ended up moving to Florida, and I thank God there was no Kaiser in Florida. My search for a helpful primary care physician on straight Medicare and outside of Kaiser began.

    Finding a Good Doctor

    After a few years on straight Medicare, I am now with Humana Gold, a Medicare Advantage plan, and I’m staying with them because I finally found a very kind, compassionate, understanding, and knowledgeable osteopathic doctor in a group practice with other osteopathic doctors. He is amazing and knows more about ME/CFS than any doctor I’ve ever met. He is neither intimidated nor intimidating and provides very useful guidance, feedback, and advice, keeping me on track with all the different self-therapies (Pacing, breaking down tasks into smaller more manageable steps, Meditation, Heart Rate Variability, gentle stretches, Self-Compassion, Self-Care, setting boundaries , etc. )and a few low dosage symptom managing medications beneficial to those of us living with ME/CFS. He has admitted to learning a lot from me, I from him, and so we feel like a team, modifying, adapting, and figuring things out along the way. Occasionally, he performs osteopathic and cranio-sacral manipulation.

    What to Look for in a Doctor

    It’s incredibly frustrating when doctors dismiss your symptoms or refuse to learn about ME/CFS. For instance, a GI doctor suggesting another colonoscopy, despite already having consistent findings, while shutting down discussions about ME/CFS, exemplifies the kind of dismissive, disrespectful and disheartening behavior many of us face. This highlights the importance of finding the right doctor, even if it means firing several along the way. At a bare minimum, they should be:

    • Humble
    • Empathetic
    • Good listeners
    • Kind
    • Understanding
    • Compassionate

    Before Dr. Otto, the other best doctor I had was also an osteopath. Unfortunately for me, he left private practice to go teach in a hospital. In any case, not all osteopathic doctors are good; many are going the way of ignorance and money now too. If I ever need a new doctor, God forbid, I would only look at osteopathic doctors.

    Consider Integrative Medicine

    If I had the financial means and wasn’t limited to insurance, I would probably focus on finding an integrative medicine doctor. Integrative medicine doctors often take a holistic approach, combining conventional and alternative therapies to treat the whole person, not just the symptoms.

    Specialist Options

    It’s disheartening to find that there are very few ME/CFS specialists in the U.S. who accept insurance, but there are doctors out there who are willing to learn and help. It’s essential to find someone who acknowledges ME/CFS and treats you with the respect and care you deserve.

    In Conclusion

    Finding a good doctor for ME/CFS can be challenging, but they are out there. It may take time and perseverance, but it’s essential to find a healthcare provider who understands your condition and treats you with the respect and care you deserve. I thank God that there are still some good osteopathic doctors in the world, and that they accept Medicare.