Tag: chronic illness

Self-Care When Exploring Long Covid Symptoms

I mentioned in a previous post that I had thought initially that the peripheral neuropathy that I was experiencing was a symptom of Long Covid.  However, as explained in a previous post, I had discovered on investigation with my doctor that there was a structural explanation for these symptoms.  In that post, I encouraged persistent exploration of symptoms with our medical practitioner because our assumptions about symptoms may be misleading.

Self-Care in the face of disinterest or denial

One of the problems in discussing Long Covid with doctors is that there is no general agreement amongst medical practitioners as to what constitutes this condition (or even that the condition exists at all) yet doctors readily accept “fibromyalgia” as a condition.  Fibromyalgia, like Long Covid, involves a set of symptoms  such as muscular pain, cognitive disturbance and fatigue and, in common with Long Covid, symptoms vary with each individual.  In one sense, today’s patient experience with Long Covid diagnosis and treatment is similar to the experience of Lyme Disease sufferers who are faced with ignorance or denial.   This experience is eloquently described in case studies by Allie Cashel in her book, Suffering in Silence: Chronic Lyme Disease in the Age of Denial. 

In her book, Allie also recounts her own experience with Lyme Disease and other chronic conditions.  She strongly encourages patients experiencing any form of chronic illness that is typically denied by the medical profession to persist in sharing our symptoms with our doctor until we achieve a satisfactory outcome in terms of adequate diagnosis and effective treatment options.  Interestingly, she also shares her story and advice in one of the “stories shared for health” on the Healing Story Collaborative platform.  Her storytelling, which includes practical hints on how to approach your doctor with difficult symptoms, is presented in her recorded conversation with Val Walker, Being Fair Reporters: Self-advocating about Chronic Illnesses with Doctors.  Sometimes, self-care may require finding a medical practitioner who really listens and demonstrates that they do the necessary medical research and are across chronic health conditions such as Long Covid.

Reflection – my story to date

Previously, I discussed healing through storytelling as a way forward to recovery from chronic illness or disability.   This is in addition to qualified medical treatment that may take the form of medication and/or physical intervention.  As identified earlier, the problem with chronic illnesses such as Long Covid is that they contribute to a sense of isolation and can lead to depression, anxiety and other mental health issues.  Suzy Bolt’s Programme, Rest, Relax, Recover, addresses the emotional and psychological aspects by providing social support and healing modalities such as mindfulness practices, breathing techniques and group discussion.  In line with the healing power of storytelling, I am continuing my own story of exploration of my chronic symptoms such as peripheral neuropathy.

When searching for a medical practitioner who could help me diagnose my symptoms and suggest appropriate treatment, I came across a local doctor, David Eaton, who has dual qualifications as a General Practitioner and as an Occupational and Environmental Physician.  The breadth of his qualifications was a clue for me in terms of his willingness to explore complex, chronic symptoms and openness to the potential influence of Long Covid.  I have since discovered that he has several special interests that are relevant to my situation:

  • Musculoskeletal medicine, physical impacts of ageing and sports injuries
  • Skin conditions
  • Diagnosing and managing chronic and complex medical conditions.

David initiated a comprehensive investigation of my symptoms including blood tests.  Through David (via X-Ray and CT scan) I acknowledged a structural explanation of my ongoing experience of peripheral neuropathy in the form of spinal degeneration (including spinal stenosis and arthritis).   

The diagnosis of my symptoms is ongoing.  Compounding my current health situation is a group of symptoms that I have assumed are a consequence of Long Covid.  Gez Medinger in his Long Covid Handbook identifies three sets of Long Covid symptoms experienced by people categorised as experiencing mild disease but not hospitalised when suffering Covid initially (my experience as well).   The three sets of Long Covid symptoms that Gez identifies can be categorised loosely as: (1) increased intolerance to foods, (2) cognitive and physical exhaustion (including brain fog), and (3) increased heart rate (palpitations) and associated health issues.  I still experience unexplained symptoms of post-exertion malaise (Category 2) and increased intolerance of certain foods (Category 1 – what was previously experienced as “food sensitivity” is now being experienced as “food allergy” with the attendant aggravation of symptoms (changing from mild to severe).

David was aware that research has supported the observation that Long Covid can increase intolerance to specific foods.  He has also demonstrated that he is continuing to research the emerging literature on Long Covid – a criterion that is very welcome when seeking medical assistance with chronic and complex health conditions in our pandemic era.  David also reinforced the three elements of the health triangle – physical, psychological and social – and their interdependence.

Unfortunately, many patients experience an unwillingness of their doctor to acknowledge the existence of Long Covid or to make the effort to explore the growing research and anecdotal evidence of its existence and pervasive health impacts. 

As I grow in mindfulness through mindfulness practices and reflection, I can continue to challenge my assumptions, gain increased insight into my habitual behaviours, adopt appropriate self-care techniques and move to develop a new personal narrative that reflects my current situation of chronic disability.  In the process, I hope to gain the acceptance that Alexia Chellun describes in her song Allowing:

I’m allowing everything to just be
As it comes to me

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Image by iqbal nuril anwar from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.

Healing through Storytelling

A challenging medical diagnosis can turn your life upside down, make you question your self-image and increase feelings of isolation, particularly if it prevents you from actively engaging with your social or sporting network.  Dr. Annie Brewster M.D., who experienced these challenges when she was diagnosed with multiple sclerosis in 2001, found that medical practitioners lacked understanding and compassion for her situation – they were ill-equipped to help her deal with the internal fallout that accompanies a chronic illness diagnosis.  Annie is now Assistant Professor of Medicine at Harvard Medical School while actively engaged as a practicing physician in Boston at the Massachusetts General Hospital.

Annie, who had been quite athletic, found that her sense of identity was challenged by her diagnosis.  She discovered that by storytelling – writing her own story addressing her identity confusion, accompanying anxiety and resultant trauma – she was able to move towards recovery reframing her identity, restoring her own power in the healing process and building resilience to handle uncertainty and fear.  She recounts her story, and offers storytelling techniques with co-storyteller and journalist Rachel Zimmerman, in their book, The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss.

Healing through storytelling

Through her book, Annie helps chronic sufferers to process their challenging emotions, create their own healing story, reframe their identity narrative and reconnect with people close to them as well as the wider supportive community.  She encourages us to utilise whatever medium we are comfortable with – whether art, music audio, video or writing – to share our healing journey and accompanying story.  The techniques she and Rachel offer can help us in that process. 

Inspired by her own positive experience of healing through storytelling, Annie created the Health Story Collaborative which acts as a platform for people to share their stories of health challenges and recovery.  The Collaborative offers a medium for overcoming the isolation of chronic illness and is “patient-centered and research based”, drawing on the research providing evidence of the therapeutic power of storytelling.  The Health Story Collaborative enables people to share their stories of illness and healing and offers multiple modes for doing so.  There are videotaped Healing Stories Sessions (accessible to anyone), as well as Audio Stories (available for public consumption).  You are encouraged to share your story of illness and recovery and the options also include music, art, poems, written stories or alternative media.  Some of the more helpful stories are featured on the collaborative blog.

Storytelling about my own diagnosis of a chronic disability

I have recently started writing my memoir, inspired by Jeff Brown’s online course, Writing Your Way Home.  One of my motivations has been the opportunity provided by storytelling to work through my personal experience of trauma.  Almost simultaneously, I have received a diagnosis of spinal degeneration resulting from “wear and tear” over my 76+ years.  A contributing factor was a serious car accident when I was 12 years old, with the undiagnosed injury aggravated by playing competitive and social tennis over 65 years. 

I am now confronted by the challenge of rehabilitation and the loss of my capacity to play tennis, cutting me off from the game I love and my social tennis network (one of my few social activities).  I can relate especially to what Annie calls the need to “integrate a traumatic health event into a new and evolving identity”.  I have to reframe my identity from my self-image of a fit, competent tennis player, which has been an integral part of my life to date.

Reflection

Ash Barty has provided me with inspiration and encouragement through her own life story.  She has also made me realise again why I loved the game of tennis.  I’ve been reading Ash’s memoir, My Dream Time – A Memoir of Tennis and Teamwork, which could alternatively be called Developing Resilience through Adversity (as she documents her multiple injuries, mental health challenges and recovery strategies).  Ash, the smiling assassin, who achieved World Number 1 WTA singles ranking for 114 weeks, shares openly her battle with negative self-messages, including the inexplicable negative self-talk about “not being good enough”.  

I can relate deeply to what Ash describes as the pleasure she developed in playing tennis – enjoying the game for its own sake and finding “love in the marriage of movement and timing and speed and strength and guile and nerve” (the willingness “to go for your shots”).  I found sheer enjoyment in my competence at tennis and my ability, even in my seventies, to surprise my opponents with unpredictable shots (such as a backhand half volley drop shot, a shot down the line or a half volley backhand lob).  I would often mentally record the competent shots that I played and still to this day can replay some of them mentally as if on videotape.  I undertook this process of recall and replay of my best tennis shots to build my sense of self-efficacy in playing tennis.

It is interesting that Ash talks about her slice backhand as her competitive advantage.  In her words, the slice backhand produces “ an unpredictable low bounce” and is created by hitting the ball “with enough angle and speed to generate a fade”.   Ash, through her slice, changed women’s tennis game at the elite level.  In the mid 1970’s, I used to employ a slice backhand as my main attacking shot when playing competitive tennis … and I would follow it in to the net to complete an attacking volley as my opponent would have to hit the ball up to clear the net.  However, over time while playing social tennis, after my competitive tennis days were over, I stopped using my slice backhand – for unknown reasons at the time.  On reflection, I discovered that what had got in the way of my using this particular shot was a form of cognitive blind spot – I had unconsciously begun to view it as “not a real shot”.  Ash’s resurrection of the slice in women’s tennis made me realise that I had unwittingly discontinued a shot that gave me a competitive advantage.

Ash at one stage in her book talks about “acceptance” – everyone is imperfect and “we’re all unique, all fallible and all with our own foibles”.  It is the nature of being human that we are prone to making mistakes and subject to life-changing mental and physical challenges.  We need to acknowledge the fragility of the human condition, accept what we can’t control, and act on what we can change for the better.  Mindfulness can help us to develop resilience in personally challenging times.

As I grow in mindfulness through reflection, meditation, writing and storytelling, I hope to develop a new narrative about my evolving identity, grow in self-awareness, and strengthen my courage to undertake the necessary, ongoing rehabilitation.  Life’s challenges can “make or break us” – mindfulness can help us to remain grounded, develop resilience and explore creative options.

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Image by Chen from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.

Lifelong Learning through Reflection

Ortrun Zuber-Skerritt and Richard Teare in their edited book, Lifelong Action Learning for Community Development, highlight reflection as core to action learning and lifelong learning.  Hospitality entrepreneur and author, Chip Conley is an exemplar of lifelong learning through reflection.  In his podcast interview with Tami Simon, he emphasised the role of reflection in his entrepreneurial career.  Chip had a secret process of recording his learnings in a weekly bulleted list based on his reflections about the previous week and what he learned from each significant encounter.  His reflective Wisdom Books in the form of notebooks were developed over many years and provided the ideas for his five published books on leadership, entrepreneurship, peak organisational performance, psychology and marketing.

Mutual mentoring – the Modern Elder

Chip was the founder and CEO of a chain of boutique hotels, Joie de Vivre.  He sold them after 24 years following a near-death experience a few years earlier.  This “flatlining” experience was the catalyst for him to think about what he wanted to do with the rest of his life and also changed his orientation from an efficiency-driven “to do list” person to a “to be list” person who was prepared to slow down and appreciate beauty and aesthetics.

He came to a clearer understanding of the difference between intelligence and wisdom and began to repurpose his life around sharing his insights and encouraging people to develop wisdom.  Reg Revans, the father of action learning, had also highlighted the difference between cleverness and wisdom and pointed out that wisdom, not cleverness, is necessary when confronted with unfamiliar conditions or situations.  For Reg, admitting what we do not know is the starting point for the development of true wisdom.

Acknowledging what he did not know became a critical component of Chip’s new career move after the sale of his boutique hotel chain.  He had been approached by the three founders of Airbnb to work fulltime in the company as a mentor and strategic adviser.  He found himself as someone in his fifties mentoring people in their twenties.  This led to a mutual mentoring arrangement where he shared his knowledge and experience re strategy and marketing in the hospitality industry and gained knowledge from the founders about the digital world and its impact on business management and growth. 

Chip wrote his book Wisdom at Work: The Making of a Modern Elder  to “share his experience of being both a mentor and an intern”.   Jack Welch, when CEO of General Electrics (an action learning-based company), also employed the concept of “mutual mentoring” between senior executives and young technological experts within the company.

The Modern Elder Academy

This experience of mutual mentoring led Chip to establish The Modern Elder Academy to enable people to make the midlife transition in a way that was enriching for themselves and others.  Through his personal experience and insight, he recognised that there was an unmet need to help people in midlife to transition to their new reality (whether that be impending retirement, role as a carer, transitioning to a new career or experiencing the onset of chronic illness).  He maintained that rituals, training and tools existed for other transitions in life (such as puberty, graduation from school or university or marriage) but not exist for those who were transitioning to the midlife stage (35-70). 

The Modern Elder Academy is designed as a “place where people cultivate and harvest their wisdom” and “reset, restore and repurpose” their life.   Chip’s academy, described in a Forbes article as a “Cool School for Midlifers”, is very different to any other academy and incorporates learning entirely new skills such as surfing and bread making and incorporates the development of mindfulness through a “silent contemplation park” and periods devoted to meditation, reflection, yoga, “wisdom circles”, appreciating the beauty of nature, and a desert-based vision quest (in the extended version only).

 One of the core challenges people experience at the Elder Academy is what Chip terms “midlife edit” – letting go of old beliefs and patterns and acquiring a “growth mindset” where the emphasis is on getting rid of baggage, developing a flexible mindset and focusing on self-improvement and personal growth.  Cliff explains that his experience of mutual mentoring led him to adjust his mindset from that of a CEO and industry leader to an “Intern”, to acknowledge that he needed to learn about the digital world of business from millennials and to shift from “being interesting to being interested” – a transition that requires deep listening.  Participants who complete the one-week “curriculum” receive a “Certificate in Mindset Management”. 

Reflection

We can grow in mindfulness at any stage of our life.  However, what Chip offers through the Modern Elder Academy is a structured way of developing mindfulness, processes for changing fixed mindsets and an opportunity to repurpose our midlife in this transition period.  The added advantage is the community dimension – making this journey with others and developing a deep sense of connectedness to nature and others (by sharing our common humanity, midlife challenges and growing wisdom).

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Image by Benjamin Balazs from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.