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Tag: chronic illness

  • 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.

  • Ten Suggestions for Managing ME/CFS and How You Can Apply Them to Your Daily Life

    This is what I have learned after 30 years of living with chronic fatigue. These ten focus points have helped me. Maybe they will help you, too.

    NOTE: This article contains a lot of information to process, particularly for those of us dealing with chronic fatigue. Take your time reading and absorbing this information, and don’t hesitate to take breaks as needed. To manage a chronic illness like ME/CFS or Long Covid effectively, it’s crucial to respect our reality and prioritize our self-care. Remember, success is measured in many different ways, and taking care of yourself is always a valuable investment in your overall health and well-being.

    Take care and be gentle with yourself.

    1. Pacing: The first suggestion is pacing. It’s essential to balance rest and activity to avoid overexertion and prevent symptom flare-ups. Remember that pacing is not about doing less, but about finding a sustainable balance. Listen to your body, and don’t push yourself into a flare-up. This will take some practice and is likely to change from day to day. So remember… Be careful…. Be mindful…. Discover what works best for you from day to day….
    2. Sleep Hygiene: The second suggestion is sleep hygiene. It’s crucial to establish a regular sleep schedule, create a relaxing bedtime routine, and maintain a sleep-conducive environment. Quality sleep can help reduce your symptoms and improve your overall well-being. Again, this is a practice that you can adapt and modify over time. So remember… Be careful…. Be mindful…. Discover what works best for you from day to day….
    3. Stress Management: The third suggestion is stress management. Stress can exacerbate symptoms of ME/CFS, so it’s crucial to find ways to manage it. Consider meditation, deep breathing exercises, or mindfulness practices to help manage symptoms. There is a free meditation class offered online by MBSR. The MBSR online training course is 100% free, created by a fully certified MBSR instructor, and is based on the program founded by Jon Kabat-Zinn at the University of Massachusetts Medical School. Palouse Mindfulness offers this course. Another suggestion is Toni Bernhard’s book, How to Be Sick. This is a powerful and insightful book that offers a unique perspective on the challenges faced by those of us suffering from chronic illnesses such as ME/CFS, Long Covid, and other similar conditions. You can take a look at this book below.
    4. Gentle Exercise: The fourth suggestion is gentle exercise. Very, very low-impact exercises like gentle stretching or breathing exercises can help improve physical function and well-being. However, always listen to your body and adjust the level of intensity as necessary so that you are always below your post-exertional malaise threshold. Most graded exercise recommendations do not take this into account, and people often overdo it and exacerbate symptoms. Also, low-impact exercise for us may simply be getting out of bed. Or, if bedbound, turning your head from side to side while lying down. Or, flexing and extending your feet while in bed. If you start by doing less and evaluate your response as you go, you will be less likely to exacerbate your symptoms. I can’t tell you how many times I was enjoying a stretching routine only to have PEM the next day. So remember… Be careful…. Be mindful…. Discover what works best for you from day to day….
    5. Nutrition: The fifth suggestion for optimal health and well-being is to pay close attention to your nutrition. A balanced diet that incorporates a variety of nutrient-dense foods, such as fruits, vegetables, lean proteins, and whole grains, is crucial to maintaining good health. Avoid consuming processed foods that contain high levels of artificial ingredients, unhealthy fats, and added sugars. Opt for fresh, whole foods that provide the essential vitamins, minerals, and fiber your body needs. Don’t forget to drink plenty of water to stay hydrated and promote optimal bodily function. Remember, a healthy diet is an investment in your long-term health and well-being.
    6. Cognitive-Behavioral Therapy (CBT): The sixth suggestion for managing ME/CFS, Long Covid, or any chronic illness is to consider cognitive-behavioral therapy (CBT). This evidence-based therapy can help you develop effective coping strategies to manage the emotional and psychological impacts of living with a chronic illness. By working with a therapist who specializes in CBT, you can learn to identify and challenge negative thought patterns, develop healthy coping mechanisms, and reduce feelings of stress and anxiety. CBT has been shown to be effective for individuals with chronic illnesses, and it can be a valuable tool in helping you manage your symptoms and improve your overall quality of life. Don’t hesitate to reach out to a qualified therapist to explore this option further.
    7. Support Network: The seventh suggestion is to seek out and maintain a strong support system. Your support system may include family, friends, and support groups. These individuals can provide you with emotional support and help you manage your condition.
    8. Medication Management: The eighth suggestion is medication management. When managing chronic fatigue, medication management is an important component. Work with your healthcare provider to find the most effective medications for your symptoms while discussing possible side effects and interactions. Starting with lower doses than normally suggested may also be recommended. So remember… Be careful…. Be mindful…. Discover what works best for you from day to day….
    9. Symptom Tracking: The ninth suggestion for managing a chronic illness like ME/CFS or Long Covid is to engage in regular symptom tracking. Keeping track of your symptoms can help you better manage your condition. By keeping a symptom diary, you can also better understandy patterns and triggers that may be exacerbating your symptoms. The key here is to do less of what makes you feel worse, and do more of what helps you to feel better.
    10. Education: The tenth and final suggestion is education. Educate yourself about ME/CFS & Long Covid, including symptoms, diagnosis, and management strategies. Becoming informed can help you advocate for yourself and make informed decisions about your health. Remember that education is an ongoing process, and it’s important to stay up-to-date on the latest research and information about your chronic conditions.

    In conclusion, managing chronic fatigue requires a multifaceted approach. By incorporating these ten suggestions into your daily life, you can better manage your condition, improve your quality of life, and find hope for the future. Remember to listen to your body, seek support, and stay informed. Thank you for reading.

    Please, for the benefit of others, leave your questions and comments below so we can all learn from one another about these ten steps.

  • Poem: Solitude and the Key

    Reflections on Chronic Fatigue Syndrome aka ME/CFS

    Solitude and the Key In silence, I find a refuge from the chaos of my mind. In the tender embrace of the night, I travel inward for comfort and grace.

    Chronic fatigue, my silent companion, taught me the art of patient resignation. In the depths of silence I carefully kept my key, where I repaired. Like a phoenix rising from the ashes of doubt, I embrace the night without shouting.

    For in the embrace of solitude I discern the lessons of the soul and long to learn them. In this quiet refuge, I find strength again, and my spirit is full.

    With every gentle breath and careful sigh, I recapture my light beneath the sky. So I rest in my lonely cocoon, gathering spoons by moonlight. Learning to dance with shadow and light, embracing the journey, embracing the night.

    🙏🕊️🙏

  • Poem: Solitude and Spoons

    Finding Solace in Solitude: A Poem for Our ME/CFS Journey

    In the quiet of solitude, I find,
    A refuge from the chaos of the mind.
    Amidst the dark night’s gentle embrace,
    I journey inward, seeking solace and grace.

    Chronic Fatigue, my silent companion,
    Teaches me the art of patient abandon.
    To conserve my spoons with mindful care,
    In the depths of stillness, I repair.

    Like a phoenix rising from ashes of doubt,
    I embrace the dark night, without a shout.
    For in solitude’s embrace, I discern,
    The lessons of the soul, I eagerly learn.

    In this sacred space of quiet retreat,
    I find strength anew, my spirit replete.
    With each tender breath and mindful sigh,
    I reclaim my light beneath the sky.

    So here I rest, in solitude’s cocoon,
    Gathering spoons beneath the silver moon.
    Learning to dance with shadows and light,
    Embracing the journey, embracing the night.

    🙏🕊️🙏

  • Embracing the Journey: Navigating Life with Chronic Fatigue Syndrome

    A Reflection on Resilience and Compassion

    In the tapestry of time, woven with threads of understanding, empathy, and love, I extend my hand to you, a fellow traveler in the realm of chronic fatigue syndrome. It’s not just a condition; it’s a journey, a complex dance with our bodies and minds. You are not a hypochondriac; you are a warrior navigating the intricate landscape of your own existence.

    Having walked the same path, I resonate with the words, “After a lifetime of living with chronic fatigue syndrome, you’d think I’d be better at it now.” Each day, a new chapter unfolds, revealing the resilience within us. It’s not about perfection or mastery; it’s about learning, adapting, and discovering the strength that resides within, often unnoticed.

    Embrace the wisdom your journey has bestowed upon you. You’ve acquired an intimate knowledge of your body and mind, a profound understanding that defies the misconceptions others may hold. You are not defined by the fatigue that courses through your veins; you are defined by the courage with which you face each day.

    In this shared experience, let love be the balm that soothes the weariness, understanding the salve that heals the wounds unseen. As you unravel the layers of your existence, remember that every nuance of your journey contributes to the masterpiece of who you are.

    Encourage yourself to practice self-compassion daily. Recognize the victories, no matter how small, and celebrate the resilience that continues to blossom within. You are not alone in this intricate dance; we move together, step by step, navigating the ebb and flow of chronic fatigue syndrome.

    May your days be adorned with moments of understanding, empathy, and love – the pillars that support you on this remarkable journey.

    May your journey continue to be filled with peace, wisdom, and compassion. 🙏

    May we all embrace our journey with a compassionate and open heart, finding solace in the present moment on our path with ME/CFS.

    🙏🕊️🙏

  • Book Review: Navigating Chronic Illness with Tony Bernhard’s ‘How to Be Sick’

    Greetings Everyone…. This is about one of the absolutely best, most helpful books, I have ever found, about living with ME/CFS.

    Toni Bernhard’s “How to Be Sick” is a powerful and insightful book that offers a unique perspective on the challenges faced by those suffering from chronic illnesses such as ME/CFS, Long Covid, and other similar conditions.

    The book is written with great empathy, warmth, and practicality, providing readers with a wealth of information, insights, and practical tools to help them manage their condition and live a more fulfilling life.

    One of the most compelling aspects of this book is the author’s own experience of living with chronic illness. Toni Bernhard was a law professor when she became ill with a viral infection that left her bedridden and in constant pain. This experience gave her a unique perspective on what it’s like to live with a chronic illness, and she shares her insights and wisdom in a way that is both accessible and highly relatable.

    The book is divided into three parts, each addressing a different aspect of living with chronic illness. The first part focuses on the emotional and psychological challenges of coping with chronic illness, including the grief, loss, and isolation that can accompany such conditions. The second part offers practical advice on managing symptoms, including pain, fatigue, and brain fog, while the third part offers guidance on how to cultivate a sense of meaning and purpose in life despite illness.

    What sets this book apart from other self-help books for chronic illness is the author’s emphasis on mindfulness and compassion. Throughout the book, Toni Bernhard stresses the importance of being present in the moment, accepting one’s condition with kindness and compassion, and cultivating a sense of gratitude for the small joys in life.

    She also offers a range of practical mindfulness exercises and meditations that can help readers to cultivate these qualities in themselves.

    Overall, “How to Be Sick” is an essential read for anyone living with chronic illness, especially those suffering from ME/CFS, Long Covid, and other similar conditions. The book is not only packed with practical advice and insights, but it also offers a powerful message of hope and resilience that can help readers to find meaning and purpose in their lives despite illness.

    I highly recommend this book to anyone looking to live a more fulfilling life with chronic illness.

    Essentially… “How to Be Sick” by Toni Bernhard is a guidebook for people living with chronic illness or chronic pain. Toni, who was diagnosed with the sudden onset of chronic fatigue, shares her personal experiences and provides practical advice for managing physical and emotional challenges associated with chronic illness.

    Toni encourages us to accept our condition, practice mindfulness, and cultivate gratitude to improve our quality of life. The book also offers insights into navigating relationships, communicating with healthcare providers, and adapting to a new way of life.

    Without a doubt, “How to Be Sick” provides a compassionate and empowering approach to living with chronic illness. It is one of the most helpful and useful books I have ever read on the subject of living with chronic fatigue.

    Dear friends, If you have found any other books, that you would highly recommend, please share them in the comments section below – it is very possible that others can benefit from your suggestions as well.

    I personally, highly recommend this book to anyone experiencing ME/CFS, Long Covid or chronic illness of any kind. You can usually find a used copy on Amazon.

    May we all find peace, joy and wellbeing on our journey through life.

    🙏🕊️🙏

  • Living Better with ME/CFS: Pacing Strategies for Daily Life

    One of the most helpful coping mechanisms for living well with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is pacing activity and energy levels. This involves:

    1. Listening to your body’s limits and respecting its need for rest. Pushing yourself too hard can lead to debilitating post-exertional malaise or crashes.
    2. Carefully monitoring your energy envelope and activity levels to avoid over-exerting. Techniques like the spoon theory can help visualize your limited energy reserves.
    3. Prioritizing activities and pacing yourself through the day, taking regular rests even if you don’t feel you need it yet. Pre-planning activity and rest cycles can prevent over-doing it.
    4. Learning to say no to demands that exceed your energy limits without feeling guilty. Protecting your limited energy is vital.
    5. Asking for help with tasks when needed and delegating activities that are taxing when possible.

    Pacing is often described as the single most important coping tool for ME/CFS. It prevents crashing and the resulting payback of increased symptoms. Other helpful strategies include stress management, maintaining hope, joining support groups, and exploring therapies or accommodations that provide relief. But consistent pacing is key to optimizing the energy available.

  • Finding Peace and Resilience with ME/CFS

    “Navigating life with ME/CFS requires a careful balance of activity and rest.” 


    Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been an ongoing challenge for me, marked by profound fatigue that doesn’t improve with rest and often worsens with activity. I also endure sleep disturbances, muscle and joint pain, headaches, and cognitive difficulties.

    Navigating life with ME/CFS requires a careful balance of activity and rest. Embracing compassion for myself is essential. Spiritual teachings offer me inner strength and resilience. Mindfulness practices help me manage stress and cultivate acceptance of the present moment, while love and forgiveness foster a supportive inner dialogue. Emphasizing inner peace helps me find tranquility amidst the challenges.

    My heartfelt wish is for all of us living with ME/CFS to nurture a deep sense of compassion for our journeys and to trust that each step, however small, contributes to our overall wellbeing.

    Together, may we find our way towards greater peace and resilience.

    🙏❤️🙏

  • Finding Peace Within the Storm: My Journey Towards Healing and Transformation with ME/CFS.

    Living with ME/CFS presents unique challenges that can often leave us feeling overwhelmed and anxious. From navigating fluctuating energy levels to managing symptoms and coping with the unpredictability of the condition, it’s easy to get caught up in feelings of fear and frustration. However, through my own journey with ME/CFS, I’ve discovered a powerful lesson that has helped me find peace amidst the chaos: the ability to choose peace over anxiety.

    For years, I struggled with anxiety and resentment, especially in my relationships and interactions with others. Whether it was the frustration of not being understood or the disappointment of feeling let down by those around me, these feelings only served to exacerbate my symptoms and diminish my quality of life. It wasn’t until I encountered the teachings of A Course in Miracles that I began to see a different way forward.

    One of the most transformative aspects of this lesson for me has been the realization that I have the power to choose peace in every moment, regardless of my external circumstances. Instead of allowing myself to be swept away by waves of fear and negativity, I’m now learning to cultivate a sense of inner peace and equanimity, even in the midst of my struggles with ME/CFS.

    By bringing conscious awareness to my thoughts, emotions, and reactions, I’m getting better at being able to break free from the grip of fear and embrace a more peaceful way of being.

    Forgiveness is also playing a crucial role in my journey towards peace. Living with ME/CFS often feels isolating and frustrating, and for many years I have harbored feelings of resentment towards those who don’t understand or support me. However, through the practice of forgiveness, I’ve been able to release myself and others from the chains of past grievances and Im getting better at opening my heart to love and healing.

    This new found shift in my perception has been helping me to find peace amidst the challenges of ME/CFS. Instead of viewing my condition as a source of limitation or suffering, I’m learning to see it as an opportunity for growth and transformation. By reframing my perspective and recognizing the inherent goodness and divinity within myself and others, I’m getting better at cultivating a sense of compassion and understanding that transcends the limitations of this illness.

    In sharing my journey towards choosing peace over anxiety, my hope is that it will resonate with others living with ME/CFS who may be struggling with similar challenges. While our experiences may differ, the lessons of mindfulness, forgiveness, and perception shift are universal truths that can offer solace and guidance on the path towards healing and transformation.

    May we all find peace amidst the challenges of ME/CFS and embrace the journey with open hearts and minds.

    Listen to your body's gentle plea,
    Rest when needed, let fatigue be.
    In moments of rest, strength will renew,
    Honoring your limits, in all that you do. 

    🙏🕊🙏