170 - Amy Mooney - "Flipping the Iceberg" - What if everything you thought about recovery is underwater?
Apr 2, 2025
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Amy Mooney, an occupational therapist with 25 years of experience and a caregiver to her daughter with ME-CFS, shares transformative insights on recovery. She emphasizes the importance of 'aggressive rest' as an active strategy and discusses various forms of exertion—physical, cognitive, emotional, and sensory. Amy also highlights the necessity of personalized support systems, preemptive resting, and prioritizing joyful activities for quality of life. Her deep understanding of chronic illness sheds light on managing symptom patterns and navigating recovery.
The concept of 'aggressive rest' emphasizes proactive recovery strategies, including preemptive and post-activity recuperation to manage chronic illness symptoms.
Understanding the multifaceted nature of exertion, which includes physical, cognitive, and sensory components, is essential for effective chronic illness management.
Deep dives
The Journey of Occupational Therapy and Caregiving
An occupational therapist shares her journey, highlighting the transition from her 25-year career focused on pediatrics and sensory integration to specializing in chronic illness care. Her personal experience began when her daughter fell ill at the age of nine, leading to years of uncertainty, diagnosis, and ultimately care for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). This shift underscores the importance of lived experience in understanding the complexities of chronic illness, particularly with unexplained conditions that mirror long COVID symptoms. The therapist’s dedication to providing empathetic care stems from the lessons learned through her daughter's struggles, aiming to ensure others receive the appropriate support that was oftentimes lacking in her own experience.
Understanding Exertion and Symptoms
The podcast discusses the multifaceted nature of exertion in chronic illnesses like ME and long COVID, emphasizing that exertion is not merely physical activity but includes cognitive and sensory overload as well. Each activity can bring about unique symptoms and fatigue can arise not just from physical exertion like running but also from minor tasks such as reading or conversing. The concept of 'pacing' is introduced, which involves carefully managing and modifying activities according to individual symptom thresholds. This nuanced understanding helps patients recognize when they are approaching their limits, which is essential for avoiding exacerbations of their symptoms.
Strategies for Aggressive Rest and Recuperation
The podcast elaborates on the concept of 'aggressive rest,' which is crucial for individuals dealing with chronic illnesses. This involves preemptive rest before engaging in any activity, ensuring that individuals are well-prepared for potentially taxing situations. Post-activity recuperation is also important, as it focuses on calming the body and addressing the symptoms that arise from exertion. Specific techniques are discussed, such as modifying environments during activities and having supportive tools ready for recuperation, which can greatly enhance recovery and manage symptoms effectively.
Individualizing Care Plans and Activities
The need for individualized care plans tailored to each person's unique experiences and symptom profiles is emphasized throughout the discussion. Strategies for gently increasing activity levels once stability is achieved involve careful monitoring of symptoms and responses to various types of exertion. The importance of patience and gradual progression is underlined, as individuals should avoid succumbing to the urge to rapidly increase activity based on fleeting feelings of wellbeing. This thoughtful approach helps prevent the pitfalls of overexertion and the subsequent debilitating consequences that many experience, facilitating a more manageable path to potential recovery.
Amy Mooney shares her unique perspective as both an occupational therapist and caregiver to her daughter with ME-CFS, revealing essential insights about rest, recovery, and meaningful approaches to chronic illness management.
• 25 years of occupational therapy experience transformed by caring for her daughter with ME-CFS for the past decade • Learning to see "beyond the iceberg" - what practitioners miss when they only observe patients during clinical visits • The concept of "aggressive rest" as an active strategy rather than simply doing nothing • Understanding different forms of exertion: physical, cognitive, emotional, and sensory • How each person has different "buckets" for various types of exertion and unique symptom patterns • The importance of preemptive rest before activities and recuperative rest afterward • Creating personalized support systems that address individual symptoms and priorities • Safely testing boundaries rather than pushing through prescribed exercise protocols • Why prioritizing activities that bring joy and meaning is crucial for quality of life • Being cautious about delayed responses to increased activity - sometimes PEM hits 3 days later
Amy has been working with Bateman Horne Center to provide education and resources to medical providers, helping ensure patients receive appropriate care focused on true rest rather than harmful exercise regimens.
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**Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Please consult a doctor or other health professional**
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