Tag: winter

Proactive Acceptance and Personal Research of Chronic Illness

I was very recently diagnosed with osteoporosis – an addition to my multiple chronic illnesses.  This diagnosis comes on top of existing chronic medical conditions including multilevel degenerative disc disease, exercise asthma, skin cancers, arthritis in my middle finger and MCAS (Mast Cell Activation Syndrome) with Histamine Intolerance (leading to multiple allergies/food sensitivities).  The existence of multiple chronic diseases prompted my medical practitioner to develop a Medicare-supplemented Chronic Disease Management Plan.

What I have learned from trying to manage my other chronic health conditions is that the way forward begins with acceptance of what is.  This is not a passive position but a proactive one entailing:

  • acknowledging the limitations imposed by your chronic illness
  • exploring the boundaries of the limitations (not accepting imagined restrictions or ones suggested by  a medical professional based on a limited perspective on your illness)
  • seeking expert and social support, e.g. the International Osteoporosis Foundation
  • redefining personal identity where that seems advisable
  • expressing gratitude for what you do have and can do
  • undertaking recommended testing
  • educating yourself about your medical condition – it’s precursors, progression and prognosis
  • researching healing modalities.

Why do personal research?

The reality is that medical practitioners, no matter how dedicated they are to your healing, are limited by time, training and discipline approach.   Very few are able to adopt a holistic perspective.  Given that chronic illness is typically complex, having a multisystem impact compounded by interdependency and interaction, a holistic perspective is often necessary to establish effective healing modalities.

Often medical practitioners, who are frequently time-poor because of the patient demand of their practice, adopt a symptomatic approach that just touches the surface of an illness and does not address the root causes.

I have experienced these limitations of medical practitioners and found that I had to supplement their perspective and approach with my own research and be an advocate for my own health improvement.  This personal research does not supplant the advice of a medical practitioner but supplements it, enabling you to ask, “What if…?”

My personal research in relation to osteoporosis

Following the personal research principle, I began to question why I was experiencing  osteoporosis when I had been exceeding the recommended intake of calcium for many years, mainly through Ostelin (Calcium and Vitamin D) and almond milk.  The question then arose as to how well my body was absorbing the calcium. 

In following this line of questioning, I learnt the following:

  • MCAS negatively impacts bone strength.  Dr. Lawrence B. Afrin (2013), international expert in MCAS, reports on research that shows that “premature osteopenia/osteoporosis is frequently found in mast cell disease patients”.  More recent research by David Harris (2024) shows that MCAS has a “direct role in bone metabolism” through the chemicals, such as histamine, released in the inflammatory response of MCAS.  He states that “this overactivation can lead to an imbalance in bone remodeling, favoring bone loss and increasing the risk of osteoporosis”.  So the focus on repair should include reducing histamine release through food control and anti-histamine medication/supplements.
  • My medical practitioner has given me a referral to an exercise physiologist to develop a weights exercise program which research shows helps to develop bone density and strength.  However, while this is important to undertake, it still addresses the symptom (loss of bone density), not the cause (potentially MCAS acting negatively on bone density).  To their credit, my medical practitioner had organised a bone density scan to identify the root cause of my degenerative disc disease and loss of height.  The scan established the existence of osteoporosis.
  • Exercise is an important part of the healing process for osteoporosis.  So my transition from playing tennis to playing pickleball, necessitated by arthritis of the middle finger on my right hand, is an important means to maintain an exercise regime and one that is less exacting but still providing weight-bearing activity essential for developing bone density and strength. There is also research that shows that people with osteoporosis should “avoid exercises with extreme spine curving forward, such as toe touches and sit-ups”.
  • I have previously written about the multiple benefits of Tai Chi and how it can improve your tennis game, as well as that of other racquet sports such as pickleball.  Tai Chi has been shown to improve bone health, being a gentle, weight bearing exercise.  This works in two major ways, (1) improving bone density and (2) improving balance and coordination (to prevent falls and related broken bones).  There are resources readily available to help people manage osteoporosis through Tai Chi such as Tai Chi for Osteoporosis (DVD by Dr. Paul Lam) and Tai Chi for Older People.

Further revelations from my personal research and experience

As I continued to research my chronic medical conditions, I discovered the following things that can impact my health:

Exercise anaphylaxis

Skin prick testing revealed that I have wheat allergy (among many other food sensitivities).  However, no medical practitioner mentioned to me that this could lead to what is known as “exercise anaphylaxis”.  Apparently, according to the Mayo Clinic, if you have a wheat allergy and you exercise “within a few hours after eating wheat” you can experience exercise-induced anaphylaxis. 

A holistic approach to MCAS incorporating nervous system regulation

Most practitioners who accept the existence of MCAS adopt a biomedical model which focuses solely on the body and the use of medications and supplements as the only healing modality.  Beth O’Hara, creator of Mast Cell 360, determined through her research and extensive work with patients that this approach adopted by most medical practitioners failed to address the nervous system, a key component of MCAS disease. Beth stated that righting the nervous system represented 50% of the necessary healing modality.  She was able to demonstrate through actual results that a healing modality for MCAS must include rewiring of three interrelated systems:

  • Parasympathetic re-balancing
  • Vagal nerve signalling
  • Limbic system re-regulation

To this end, Beth designed a masterclass titled Mast Cell Nervous System Reboot.  I have purchased this course and have been working my way through the science explaining the nature of MCAS and the underpinnings of Beth’s healing protocol. I am looking forward to undertaking the practices she incorporates in the course to calm the nervous system.   Her Mast Cell 360 website has multiple resources, including health coaches, for people experiencing MCAS and histamine intolerance.

Allergic arthritis

One of the things I discovered independently was the existence of allergic arthritis.  I had been wondering why the joint in my right middle finger was swollen whenever I experienced other allergic reactions.  Research has shown that allergies /food sensitivities, creating an inflammatory response, can aggravate existing arthritis and cause osteoarthritis in other parts of the body.

Low histamine foods – apples

Apples have been identified as a low histamine food.  I have found that I can readily tolerate Pink Lady apples without an allergic response.  However, I have also found that Red Delicious apples cause a serious reflux reaction, leading to a sensation of choking. 

High histamine foods – avocados

Avocados are identified as a high histamine food and can impact people who have a histamine intolerance.  However, research shows that avocados that are firm and not too ripe are lower in histamine than those that are soft and over-ripe.   This revelation was important for me as avocados have multiple health benefits and are a key part of my diet and are necessary to help me maintain my weight (which is a challenge given my restricted diet because of allergies/food sensitivities).


Reflection

The winter of my osteoporosis is yet to come as it is early days.  However proactive acceptance and personal research can enable me to maintain a summer perspective in relation to my chronic illnesses.  My research has highlighted things that I need to avoid, opened up new lines of inquiry, highlighted potential healing approaches and strengthened my ability to be an advocate for my own health with medical practitioners.

The more we grow in mindfulness through Tai Chi and other mindfulness practices such as mindful eating and mindful walking, the better we will be able to develop proactive acceptance, engage in personal research and find creative solutions to our chronic illness.

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This post is provided for information purposes only and is not intended to replace personal medical advice provided by a trained medical practitioner.  Please seek advice from a qualified professional before deciding on treatments for yourself or other members of your family.  This article reflects my personal patient experience – MCAS and related diseases affect each individual differently.  I frequently share my research findings with my medical practitioner and this informs my treatment.

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Image by Yana Vakulina 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.

Managing the Seasons of Chronic Illness – Summer

In a previous post,  I discussed the season of winter in the progress of our chronic illness.  There I explored “wintering” as a way to move beyond the darkness, despondency, despair and debilitation that accompanies the experience of winter in the progression of our chronic illness.  Wintering, in this context, involves “letting the light in” through rest, renewal and regeneration.  In my accompanying poem about wintering, I explored what it meant for me during a particular period of darkness.

In our August Creative Meetup, Jennifer Crystal read an extract from her book, One Tick Stopped the Clock, as a stimulus piece for writing in our group of writers-with-chronic-illness.  The extract focused on the hope associated with the arrival of summer following a period of winter.  In the extract, Jennifer recounts her desperation in the face of her totally debilitating Lyme Disease.  At the time, she had a catheter feeding intravenous antibiotics through her arm and chest cavity to her heart.  She was grossly sleep-deprived, suffered migraines , battled a health insurance company for her reimbursement entitlements, and experienced brain fog.

Jennifer sought help from a therapist as well as a specialist in Lyme disease who was a member of ILADS (International Lyme and Associated Diseases Society).  Jennifer’s therapist, Michelle, spoke to her about her dreams that involved Jennifer water skiing.  In an earlier period, Jennifer was unable to water-ski but had been able to drive the boat for other water skiers.  The literal interpretation of her dream suggested that she was missing the ability to water ski herself.  However, Michelle suggested that a metaphorical interpretation was that the dream reflected “loss” in a broader sense – the loss of a positive and productive  life style that preceded Jennifer’s debilitation from Lyme Disease.

Michelle suggested that even though Jennifer should be in the “summer of her life” at age 27, the summer would come and the experienced winter of her chronic illness would pass.  The future onset of summer represented hope for a better quality of life.  Michelle questioned Jennifer’s disbelief in the possibility of experiencing “the summer of her life”.  Jennifer expressed her doubts when Michele said, “you can live a happy, fun, fruitful life once you are well”.  Jennifer has gone on to publish her book despite her personal hardships, and become a story coach and trainer, author of a weekly column for the  Global Lyme Alliance and facilitator for the Creative Meetup group, hosted by the Health Story Collaborative.

Creative Meetup Process – Writing Prompts

Following the reading of the stimulus material, we were invited to address one of the following writing prompts:

  • Write about something that you have lost as a result of chronic illness.
  • What have you replaced or how have you transformed this loss?
  • How would you describe the season of your current illness?

I decided to address these prompts together because they were interdependent.

The loss I focused on was my inability to play social tennis during the cold seasons of the year because of chronic arthritis in the joint of the middle finger of my right hand.  The cold weather aggravates the arthritis which is also aggravated by allergies (allergic arthritis brought on by MCAS).  However, I have been able to replace my social tennis with weekly social pickleball which also enables me to play more consistently because I play it indoors and am not subject to the vagaries of the weather (or exposed to cold winds).  While I still have to manage the arthritis in my finger, the impact of hitting the ball is not as great or painful as it was with tennis.

The Summer of my medical condition

When I thought about where I was up to with managing my current chronic health conditions, I thought of summer – a season of hope.  I have located a general medical practitioner who is an immunologist and very willing to explore a range of treatment options.  She is also willing to listen and not jump to conclusions. 

Pickleball has been a very effective and rewarding replacement for my social tennis.  The gains through pickleball are many and varied:

  • New knowledge and skills
  • The opportunity to continuously learn
  • The chance to try out new shots – experiment
  • The ability to build on existing competence in shot making and strategic play built up over many years of tennis (more than 60 years)
  • A new form of exercise and increased motivation to stay fit.

Pickleball has transformed my weekly social, physical activity so that it is not as demanding as playing tennis.  It also provides a range of new rewards:

  • Joy from experiencing new competence (intermediate level pickleball skills)
  • Developing new friendships
  • Fun with playing with different partners in a social environment (the requirement to “play nice”, rather than all-out competitively)
  • Social support from people who are also aged and experiencing physical limitations
  • The enjoyment of looking forward to catching up with my pickleball group and playing more games.

When I reflect on my current medical condition, I can appreciate that in many senses I am experiencing a summer of my chronic illness.  I have framed my present state as “summer” because of what I have achieved or am achieving:

Reflection

I’ve recognised that a prerequisite for managing chronic illness is acknowledging that there will be ups and downs, times of moving forward and other times of regressing – there will be winters and summers of our chronic illness experience.  For each of the seasons of our medical condition, there are strategies that we can use to heal and recover.  One of these is the process of writing.

If we can grow in mindfulness through practices such as Tai Chi, meditation and mindful walking, we can learn to reframe our situation, express gratitude for what he have and can do and access our creativity to explore healing options.  There is a lot of helpful information on the Internet that is readily available to us if we choose to look.  The real test is in the application of what we learn. 

Dexter Dunphy and Bob Dick, in their book Organizational Change by Choice, provide a relevant quote from an anonymous author (p. 126):

To look is one thing
To see what you look at is another
To understand what you see is a third
To learn from what you understand is something else
But to act on what you learn is all that really matters.

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This post is provided for information purposes only and is not intended to replace personal medical advice provided by a trained medical practitioner.  Please seek advice from a qualified professional before deciding on treatments for yourself or other members of your family.

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Image by Jürgen 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.

Wintering: Finding Light in the Darkness

I belong to an online group that meets once a month to share their stories of chronic illness and healing, both orally and in writing.  These Creative Meetups are sponsored by the Health Story Collaborative (HSC) and are designed to enable participants to access the healing power of storytelling.

In our December Meetup,  Jennifer Harris (our facilitator) introduced the theme of the winter solstice and the related concept of moving from darkness to light.  The winter solstice is the time of the year when we experience the longest night and shortest day, signalling the transition from Winter to Spring.  The event occurs at different times in the Northern Hemisphere (December) and the Southern Hemisphere (June).

Throughout history, the symbolism of the transition from darkness to light, represented by the winter solstice, has been celebrated around the world through rituals and festivals.  There is also a very rich core of poetic expression around the theme of the winter solstice revealing the embedded sub-themes of rest, recuperation, replenishment and transformation.

Winter too is a time of transition for animal and plant life.  Animals, for example, often withdraw from the bitter cold of winter and undergo some change in their habitat, feeding and outward appearance.  They will prepare and change to meet the challenge of winter and, in some cases,  hibernate so that they can survive.

The challenge of winter and wintering – moving from darkness to light

Katherine May, captures the essence of the challenge of transitioning from darkness to light in her book, Wintering: The power of rest and retreat in difficult times.  She recounts her personal story of dealing with darkness in her life and her struggle to discover the light that would lead to her transformation.  Katherine initially treated the advent of darkness in her life as a source of humiliation but came to realise that the darkness, like the transition from day to night, is “inevitable”.

Darkness for Katherine descended in the form of illness- undiagnosed autism and depression, as well as death in the family.  She found the resultant involuntary period “lonely and painful”.   Her tendency, like that of many others, was to withdraw, hide from public view and “show a brave face” whenever she could not avoid appearing in public.    

Ivan Cleary, Head Coach of the Penrith NRL team, who suffered from depression during his football coaching career, found it a “humbling experience” and sought to hide the fact and withdraw from interaction with people.  However, he found strong social support through his wife, Bec, and family members.  After his second bout of depression, he learned to share his story with others and to model openness about his condition for the welfare of his players.  Katherine, too, found that sharing her story, rather than hiding away, was healing.  In telling her story to others, she found that there was a “shared thread in their story and mine”.

Learning to invite winter in

After a period of resistance, Katherine learned that “wintering” was a process of reflection and renewal and she gained a sense of “its length and breadth”.  She began to understand that wintering was “not the death of a life cycle but its crucible”.   She was able to recognise the wintering process and “engage with it mindfully and even cherish it”. 

Katherine realised that inviting the winter in involved acceptance of her current health condition (and the nature of the human condition) while making adjustments to achieve ”a comfortable way to live till Spring”.  She found that wintering could create insightful and profound moments in her life.  Katherine concluded that “wisdom resides with those who have wintered”.  Novelist Olga Tokarczuk reinforces this view in her book, Drive Your Plow Over the Bones of the Dead, when she has a key character conclude that “sometimes I think that only the sick are truly healthy”.

My own recent darkness

Over the past month, I have experienced a personal winter and attendant darkness.  My daily life was upended by several concurrent events:

  • A friend and colleague dying of cancer
  • A close friend and co-author/co-facilitator (over 16 years) suffering a major stroke
  • A serious illness of one of my adult sons
  • A major flare-up of my MCAS-fuelled dermatitis.

As a result of these events, I have experienced grief, sadness, frustration, panic, and debilitation.  The social support of my Creative Meetup group, where I have shared my story online, has helped me cope with these challenges.  I am slowly emerging from the darkness as I acknowledge and accept my condition and begin to reach out to let the light in.

 Letting the light in

During our Creative Meetup session focused on the winter solstice theme, Jennifer suggested that we write a letter to ourself, our body and/or the year ahead about what it means to let the light in.  I found that I was able to identify some ways that the light was beginning to penetrate my darkness:

  • Discovered the power of intentional breathing  
  • Became aware of a new hyper-sensitivity to soy products
  • Discovered that an infection from a tick bite contributed to my flare-up (resulting in the MMA allergy – Mammalian Meat Allergy)
  • Gained a referral to a specialist allergist to understand and manage my MCAS
  • Received strong support, TLC and understanding from my wife
  • Revisited the healing power of nature through Louie Schwartzberg’s visual meditations incorporated in 21 Days of Gratitude
  • Drew on the inspiration of my son’s resilience
  • Obtained medical assistance from a hospital Emergency Department.

Reflection

It appears that wintering is a natural part of the human condition.  Our normal tendency is to deny our condition and to hide it from public view, whatever form our darkness takes at different stages of our life cycle. However, if we engage our winter mindfully and embrace its learning opportunities, we can experience renewal and growth, increasingly realizing our human potential.  Katherine reminds us that there can be “a quick onset” of winter or a “slow drip”.  Whatever way it occurs, we can use the inherent challenge of darkness to grow in mindfulness and emerge into the light, wiser and more resilient. 

I created the following poem after reflecting on our discussion of the winter solstice and reading Katherine’s book on “Wintering”:

Letting the Light In

The darkness engulfs me:
a major stroke suffered by a close friend,
the death of a colleague,
serious illness of a relative,
MCAS flare up – dermatitis gone mad,
the light blocked out.

Wintering brings wisdom, resilience and regeneration:
without winter, there is no transformation,
without breath, there is no life,
without darkness, there is no transition to light,
without challenge, there is no growth,
without sickness, there is little wisdom.

Letting the light in:
accepting what is,
seeking out glimmers,
searching out options,
acknowledging the power within and without,
accessing agency to accelerate healing,
admiring the resilience of the healing journey of others,
savouring accomplishments achieved under difficulties,
connecting with others to gain strength.

Being gentle with myself:
sustaining my heart in the midst of heartlessness,
searching for hope in a poem,
seeking intimacy and connection,
finding sustenance in  writing poetry,
expressing chronic pain and frustration,
sharing my story with others,
adjusting my expectations,
savouring freedom and life,
meditating on nature.

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Image Source: 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.