MCAS – Grow Mindfulness

Managing Chronic Illness

The November Creative Meetup was facilitated by Jennifer Crystal, author of One Tick Stopped the Clock. Jennifer is a “story coach” with the Health Story Collaborative which hosts the online Meetups. She also conducts the Writing to Heal Immersive at the Grubb Street Center for Creative Writing. Jennifer has a long history in writing about her experience with Lyme Disease and sharing her knowledge with others who have contracted the disease and other tick-born illnesses. Since 2013, she has been the writer of a weekly column for the Global Lyme Alliance and her enlightening and inspiring blog posts can be found on the Alliance website.

Jennifer’s medical journey

Jennifer was bitten by a tick on a camp when she was 19 years old but had to experience many frustrating years of misdiagnosis. At 25 years of age, she was finally diagnosed with Lyme Disease which led to the Epstein-Barr virus (EBV) infection that causes Mononucleosis. Jennifer was bed-ridden and experienced multiple symptoms that doctors had not been able to explain. In her period of misdiagnosis, she was variously told “to rest”, “eat things close to the ground” (e.g. chicken and turkey), and “talk about your feelings” (assuming that the illness was psychosomatic, not real). Grace Currey from Australia (bitten by a tick in the US) provides a vivid description of what it was like to have Lyme disease that was not recognised by medical professionals in her home country.

Jennifer Crystal had a five-year journey to wellness and remission of the Lyme disease. However, she then had to experience a “searing relapse” and eventually found a new balance and developed her teaching-coaching career. Earlier, she was unable to commit to relief teaching because of her inability to guarantee that she could manage physically or emotionally. She is now a leading proponent of the multiple benefits of sharing your health story and teaches people how to write-to-heal.

Stimulus questions during the Creative Meetup

Typically the Creative Meetups begin with a writing stimulus of some kind such as a poem, article or book extract. Jennifer introduced herself to the group and read a few brief sections from her book which served as a basis for creative writing by group members and story sharing in the group. Jennifer’s stimulus questions flowed naturally from her book extracts:

Write about a time when you felt brushed off and what you wished that person could have seen on the inside, or
Pick a single object related to your story and write about it in a poem or prose – see where it takes you!

These were both challenging and fruitful questions that led to some insightful, creative writing by the group and follow-on sharing and discussion. The level of creativity, resilience and insight in the group always amazes me. The Creative Meetup process illustrates the healing power of storytelling and demonstrates the benefits of this approach to “narrative medicine”.

Jennifer’s healing strategies

Besides the medical solution of months of antibiotics, Jennifer identified the need to change her mindset about her chronic illness. She adopted a number of strategies to achieve this:

Integrating chronic illness into her life – she established a “new normal” which addressed the question, “How to live well in the context of a chronic illness?”. This very much involved self-acceptance and avoiding denial. It also meant acknowledging that there was “no going back”.
Shedding an identity made impossible by the chronic illness – Jennifer’s dream was to become a skiing instructor – a role very much tied up with her self-image and personal goals. This identity was no longer possible given her disabilities precipitated by her chronic illness. She had to shed her ”skier instructor identity” and find a new sense of self. She asked herself the question, “if I can’t [follow this dream], who am I?”. This required her to value herself for who she was, not who she might be or could become. She recognised that she was still a caring person, who had friends that she connected with, and was still a writer.
Pacing herself – slowing down and recognising that she needed frequent sleep and suffered from brain fog and other debilitating symptoms. It meant napping each day, taking on freelance writing, listening to her body and sharing the load by moving in with her parents. It also meant building stamina gradually, not trying to achieve her previous “workaholic” status. It required her to accept that things would take much longer than previously to complete and that healing from chronic illness is not a linear process, but an undulating journey of indeterminate length.
Learning to say “no” – part of self-care during chronic illness is to being able to say “no”. Jennifer reiterated the view that “No is a complete sentence”. Saying “no” enables us to set personal boundaries. Jennifer encouraged us not to fall into the “explanation trap”, which itself consumes energy and can lead to exhaustion and frustration. We don’t have to explain everything or give a reason for our “no”. She suggested that we could use her phrase, “No, that would not be healthy for me now”.
Writing – the process of writing enables our inner landscape to become outer, to express the feelings that are hidden inside us. Writing can change our mindset and create freedom. Initially, Jennifer could not write about her illness and all that it entailed, so she concentrated on writing to her friends and family. Eventually, she was able to address the issues of her chronic illness, including the challenge of “not being seen” or understood. She found that writing enabled her to be more honest and vulnerable. It helped other people to see the effects of chronic illness and to become more compassionate in their interactions with others.
Joining a community – the Health Story Collaborative (HSC), for example, provides a community where people are encouraged to share their health stories either verbally or in writing. Their Creative Meetups are one form of regular online interaction in a community that provides social support and encouragement. Jennifer found that undertaking a course in creative writing enabled her to share her chronic illness with her classmates who did not judge her, were in a learning mode too and were exploring making the “inner world” visible. She also noticed that people were better able to assimilate information about an individual’s chronic illness when it was shared in written form.

Reflection

In the discussion that followed the creative writing of participants, one major issue emerged. This involved people not understanding the hurt that their well-intentioned words can cause to someone who is suffering from chronic illness. Comments such as “You look good” or “You don’t look ill to me” can be particularly hurtful when someone with a chronic illness has gone to the trouble (despite the difficulty involved) to “dress up” or put on a “façade” when they are going out in public (leaving their bed and track pants behind)!

The well-intentioned comments can be experienced as “devaluing” the experience of a person with a chronic illness. It can also trigger memories of mistreatment by the medical practitioners who were unable to relate the presenting symptoms to their “medical cookbook”. Annie Brewster (founder of HSC) contends that many patients with chronic illness experience “frustration, invalidation and exhaustion” when their ongoing symptoms don’t fit neatly into the “diagnostic algorithms” of medical practitioners.

As we grow in mindfulness through reflection and sharing our stories, we can increase our sensitivity to the situation and needs of others and experience what Jennifer describes as developing “greater compassion for others”.

During the creative writing segment of our Meetup with Jennifer I wrote the following poem to reflect some of the earlier sharing and my own experience of dealing with medical professionals who consider the existence of MCAS (Mast Cell Activation Syndrome – my chronic illness) as controversial as the concept of Lyme disease:

Validation and Accommodation

There’s no place for me in cookbook medicine –
so I don’t have an illness,
it’s all in my head.

Until something happens that is considered serious –
then perspectives change.

I appreciate my body –
the millions of daily decisions,
the miracle of breath,
the ability to write, walk, run and play tennis.

Now my body seems to be letting me down –
treating good food as invaders,
hypervigilant, ever on the alert.

My new bodily reality –
reflecting the dark and light of nature,
creating a challenge to accommodate the “new normal”,
with its remissions and relapses,
enabling and disabling in unpredictable ways.

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Image by Márta Valentínyi 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.

Breathing with Intention

In our October Creative Meetup we focused on the theme of “breath” catalyzed, in part, by James Nestor’s book, Breath: The New Science of a Lost Art. In our discussion, various poems about “breath” were highlighted. These included Mary Oliver’s poem, I Am Breathing and Rumi’s poem Only Breath where he notes, “first, last, outer, inner, only that breath breathing ”. The poems and James’ book reinforce the essential nature of breathing for human existence – at every moment that we are alive, we are breathing.

We consciously “hold our breath” for many reasons. It may be to swim under water, to steady ourselves before playing a tennis shot or as part of a mindful breathing exercise. However, we often hold our breath unconsciously when we experience fear, anxiety, anger or shock. This was made clear by an exercise we undertook as part of the Creative Meetup. We were asked to think of a time when we held our breath and explore what happened at the time in terms of bodily sensations and emotions.

What immediately came to mind for me was a car accident that I experienced when I was 12 years old. I was travelling with my family and my father was driving us home. At one moment, I looked out the side window of my passenger seat to observe a large car approaching on the left (we were in a small car on a main road). It was as if time stood still as I realised that the oncoming car was going to crash into us and instinctively I held my breath waiting for the impact. We were hit on my mother’s passenger side and ended up upside down at the foot of a four metre embankment. I can’t remember when I exhaled but I was aware that my breathing was erratic and I was in shock.

Learning to breathe with intention

James Nestor recounts how he undertook research with free divers in Greece. These divers were able to dive to incredible depths (up to 300 feet) while holding their breath (not assisted by any breathing apparatus). They could dive to depths that scientists thought were not possible for human beings. What James learned was that these divers considered breathing a conscious act (not unconscious as most of us breathe in our daily lives). For the divers, breathing is a mechanism to achieve depth in diving and they intentionally “coax their lungs to work harder” so that they are able “to tap the pulmonary capabilities that the rest of us ignore”. The divers suggested that anyone who is healthy can achieve what they achieve if they put in the time and energy “to master the art of breathing”.

In talking to a range of divers, James learned that there are multiple ways to breathe and that different ways to breathe “will affect our bodies differently”. The divers explained that various breathing methods can enhance our brains, lengthen our life span or improve our physical and mental health. Other ways we breathe can have the opposite effects. James discovered that the secret to nourishing our brains and enhancing our health is to breathe with intention.

James expanded his personal interview research with divers by exploring the published literature on breathing including books on regulating breathing that were 400 years old. As James points out, many cultures over the centuries have focused on the art of breathing and its benefits, e.g. Buddhists use conscious breathing to reach higher levels of awareness and to achieve longevity. The scientific literature reinforces the view that how we breathe can affect the systems of the body, e.g. our immune and digestive systems. Some of the research, for example, showed that “asthma, anxiety and even hypertension, and psoriasis” could be reversed or reduced by changing the way we breathe.

James’ conclusion from all his research is that we can use conscious breathing “to hack into our nervous system and control our immune response and restore health”. In his book , he sets about providing exercises to enable us to learn to breathe with intention so that we can reach our potential in terms of our mental and physical health.

Reflection

As I listened to the audiobook version of James’ book, Breath, I began to realise that intentional breathing as promoted by him could help me alleviate my MCAS difficulties – which are fundamentally a result of an over-reactive immune system. Calming my immune system through the breathing exercises contained in each chapter of James’ book could enable me to expand my food options, which at the moment are severely limited because of my food sensitivity responses (such as rash, hives, headaches, and nausea).

Many mindfulness teachers demonstrate that we can grow in mindfulness through conscious breathing which enables us to become grounded, calm the mind and body, expand our lung capacity and increase our focus and clarity of thinking.

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Image by John Hain 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.

Meditation for Clarity and Calm at Work

Neuroscience has highlighted the multiple benefits of mindfulness practice. These include the capacity to pay attention, sustain task-focus and regulate our emotions. Mindfulness can contribute to our overall happiness by enabling us to be in the present moment (rather than the past or future), to sustain positive emotions and recover from perceived adverse events. Mindfulness enhances our capacity in a work situation by enabling us to handle abstract ideas, to be reflective and to strengthen the communication between the hemispheres of the brain. Nadine Cherry who teaches meditation and other mindfulness practices to corporate organisations around the world, maintains that meditation can also develop clarity and calm.

In a 12-Minute Meditation podcast (25 April 2024), Nadine facilitated a session on the theme, Meditation to Cultivate Calm and Clarity. In that session, she introduced two mindfulness practices that she contends can be used in the workplace or when working at home. They are short and can be undertaken anywhere:

1. H.A.L.T. Practice

In this process we can explore the bodily sensations and our thoughts associated with hunger, agitation, loneliness and tiredness. It involves stopping for a brief period to focus on each of these states and how they are affecting us in the present moment. It requires tuning into our bodies and our thoughts to assess where we are at in terms of these four human conditions. It also involves reorienting ourselves when we find that we are being impeded by what is going on both in our bodies and our minds. Nadine maintains that this mindfulness practice can contribute “to inner peace and outer performance at work”. It can be very useful as a prelude to a potentially tense meeting, a formal presentation or a challenging conversation.

2. Vagal Toning

Vagus nerves are a critical component of our parasympathetic nervous system and are responsible for creating signals between our brain, heart and digestive systems. Before challenging activities at work, we can experience tightening of our throat or chest. Vagal Toning involves deep breathing and exhaling with a particular sound that relaxes the vagal nerves. The process requires deep inhaling through the nose and then exhaling while making a “v” sound. This action expands the chest and calms the body, enabling clarity of thought and decision-making. Vagal toning helps us to become more grounded and connected to ourselves, enabling us to relax and to achieve optimal performance in the moment.

Nadine asserts that these two mindfulness practices facilitate “authentic expression” and enable us to overcome “overwhelm” when working. By helping us to become more connected to ourselves, they assist us to become clear about what we want to do and say in a work situation.

Reflection

While listening to Nadine’s podcast and participating in the mindfulness practices she described, I recalled another calming benefit of mindfulness that has personal relevance to my health situation. I had been watching Dr. Darin Ingles’ Q & A video presentation on the Inflammatory Auto-Immune Response where he mentioned strategies to manage Mast Cell Activation Syndrome (MCAS) – a condition that I am currently experiencing.

Mast cells release chemicals that produce an inflammatory response to a “perceived invader” – something the body may misperceive as harmful (e.g. a particular protein found in gluten or milk). The activation of the mast cells can range on a spectrum from mild to severe. Darin maintains that in addition to medication, natural processes such as bodywork “can be helpful in resetting your autonomous nervous system and getting it back under control”. He mentions explicitly bodywork such as meditation, Tai Chi, acupuncture, vagal toning, yoga and deep breathing as being especially helpful in toning down the body’s “hyper-active” immune response.

The calming influence of Tai Chi on MCAS provides an added motivation for me to practise Tai Chi regularly. I have previously developed a mnemonic, FRAICHE, to remind me of other potential benefits of this mindfulness practice – flexibility, reflexes, awareness, intention, concentration and coordination, heart health and energy. So, as we grow in mindfulness through practices such as H.A.L.T. , vagal toning and Tai Chi we can calm our body and mind and develop clarity in our thinking and decision-making.

Darin is the author of The Lyme Solution: A 5-Part Plan to Fight the Inflammatory Auto-Immune Response and Beat Lyme and provides a regular podcast on health issues, Resilient Health Radio.

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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 Fabiana pfernandes 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.

Deprivation Can Engender Gratitude

We take so much for granted – that we can breathe, walk, talk, see, and hear. Deprivation makes us aware how privileged we are to have these functions and other functions such as choosing what we want to eat, achieving basic elimination functions with ease or being able to write or key (not encumbered by arthritic pain and distortion). The recent Reversing Mast Cell Activation and Histamine Intolerance Summit 2.0 brought home the stark realities of how Mast Cell Activation Syndrome (MCAS) and/or histamine intolerance can impact the quality of our life.

As I listened to various expert speakers who themselves had experienced these conditions, I became more aware of what I do have in terms of quality of life and daily functions. Some of the speakers had periods when they were super-sensitive to smells (such as the perfume of their daughter), unable to eat a wide range of foods because of allergies) or were sensitive to mold in their homes. Others spoke of the symptoms of histamine intolerance and the impact this had on their daily life and their capacity to choose what they would like to eat.

Hope and social support

Parental and social support build hope and agency and enable people with chronic illness or disability to rise above their health challenges and achieve a successful recovery, often beyond peoples’ wildest dreams.

Alexa Leary’s story – from tragedy to triumph

The recovery story of Alexa Leary, Australian Paralympic Swimmer destined for Paris 2024 Olympic Games, is a hugely inspiring account of how parental support and social support have helped her to achieve her goals. Three years ago Alexa had a very serious accident on her bike as a world-class triathlete – causing traumatic brain injury and multiple other significant injuries. She was not expected to live, and, even if she did survive, she was not expected to be able to talk or walk. Alexa’s parents set aside their own lives and spent six months by her bedside in hospital to support her recovery.

Alexa’s rehabilitation efforts are starkly illustrated in the video story, Triumph Over Tragedy. Her incredible sporting accomplishments since the accident reinforces the value of the social support she received from organisations such as the global Pho3nix Foundation, dedicated to helping young people through sport and activity to develop a “sense of purpose, focus and possibility”. Alexa was a participant in their Athlete Program designed to enable underfunded, aspiring Paralympics and Olympic athletes to compete in the Olympic Games. When sharing her story of recovery through radio, television and social media, Alexa emphasised the critical role music played in her life and recovery.

Specialised Support through ADDA

Duane Gordon, President of Attention Deficit Disorder Association (ADDA), elaborates on the benefits of social support and shares multiple stories of how ADDA’s many support groups have facilitated the recovery of its members. Tom, an accomplished engineer, experienced overwhelm in everyday tasks such as shopping but was able to gain support and ADHD-friendly strategies through ADDA’s Healthy Habits and ADHD Brain Group. People with ADHD typically experience relationship difficulties but ADDA’s support group Loving and Living with ADHD: Partners Connecting helped Mark and his partner to rise above the challenges of this condition and strengthen their relationship. ADDA’s support group, ADHD @ Work> Survive and Thrive Support Group, helped James recover from the loss of his job caused by ADHD challenges such as confusion, meeting deadlines and remembering tasks.

Reflection

I was recently diagnosed with early stage, normal tension Glaucoma which has reduced my peripheral vision. I am undertaking a series of tests to determine what the cause is and what kind of treatment is required. The diagnosis has forced me to face the prospect of increased loss of sight, retraction of my driver’s licence and loss of the associated independence. The social support provided by the Creative Meetups, sponsored by the Health Story Collaborative, is particularly critical at this point in time.

I wrote the following poem as a way of reflecting on my present circumstances with the possibility of increased loss of vision:

Losing Sight

Sight lighting my way,
expanding my horizons,
disclosing people and cultures,
revealing nature’s beauty,
enabling enjoyable activity.

Playing a game of tennis,
writing a book,
driving a car,
watching a video,
reading a book,
creating a poem,
developing a blog.

Encroaching blackness,
moving in from the edges.
Losing sight a real prospect.
Rescinding of independence.
Storing recollections for future reference.

A long-playing internal videotape,
of my best tennis shots,
played over the years.
Now categorised by tennis stroke –
forehand, backhand, volley, serve and smash.

A rich palette of memories of nature’s beauty –
blue and white, purple and brown,
red and orange, yellow and green,
grey and black.

Moving from sight to sound,
from reading to listening,
from writing to recording,
from driving to walking.

Feeling my way.
Testing to understand.
Exploring my options.
Appreciating what I do have – while I have it.

As we grow in mindfulness through reflection, meditation and time spent in nature, we can increase our appreciation and gratitude, fortify our hope and strengthen our resilience.

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Image by Shan 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.

Mast Cell Activation Syndrome and Covid-19: The Invisible Link

There has been a lot written lately about Long Covid and its differential impacts on individual’s health. More recently research has highlighted a connection between Covid-19 and Mast Cell Activation Syndrome. It is important at the outset to reinforce the need to consult a medical practitioner for treatment of individual health symptoms. We can too easily make assumptions about what is occurring for us if we go it alone. For example, I assumed that my numb feet were the result of peripheral neuropathy caused by Long Covid. When I consulted my medical practitioner, I discovered, through the X-Ray that he requested, that my assumption was wrong – the actual problem was multi-level spinal degeneration. However, it is important to consult practitioners who are open to multiple explanations of chronic symptoms, such as those induced by allergies and food sensitivities. Often, this may involve a medical practitioner who has a holistic perspective and/or is qualified in functional medicine.

I recently participated in a Creative Meetup conducted by Health Story Collaborative. During the meeting, Diane Kane responded to a discussion by a number of participants who were experiencing Long Covid symptoms such as loss of sense of smell, brain fog, and allergies. When I mentioned my ongoing battle with food sensitivities and allergies, Diane shared some information about Mast Cell Activation Syndrome (MCAS). She explained that her website is a research hub for MCAS. On the website, Diane shares her own extended patient story as well as research resources including a video presentation on MCAS by Dr. Larence B. Alfin, author of Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity.

What is Mast Cell Activation Syndrome?

Dr. Kelly McCann in a video podcast interview explains that mast cells are a key part of our normal immune system. Their role is to watch for invaders that would cause injury to our bodies. They reside everywhere in our bodies from our head to our feet, and typically live in areas of our body that are at our interface with the environment, e.g. our skin, our blood vessels and our nerves.

Mast cells are responsible for delivering chemical messengers, called “mediators”, such as cytokine and histamine, that produce an inflammatory response to the perceived invader, e.g. a virus, environmental chemicals, mold, or the flu. Kelly points out that research has shown that mast cells play a major role in the “cytokine storm” that causes an inflammatory response to Covid-19. If the “foreign invader” is overcome (e.g. we recover from Covid or the flu), “everything quiets back down again” and ‘inflammation goes away”.

However, for some people mast cells become over-active, “hyper-vigilant” and hyper-responsive” – a condition identified as Mast Cell Activation Syndrome (MCAS). What happens then is that our body “misperceives things”, some of which are actually good for us, e.g. healthy foods. Hence, we can end up with food sensitivities and allergies (to things like smells, chemicals and some foods). Kelly makes the point that because of the pervasiveness of mast cells in our body, “anything in our body could present as a mass cell activation symptom”, e.g. brain fog.

Kelly explains that Mast Cell Activation Syndrome is “a spectrum” – ranging from mild to extreme. A key feature of MACS is that over time, without intervention, there will be an “escalation in the inflammatory or allergic symptoms” of an individual. The inflammatory response can be exacerbated by what Kelly calls “hits”, e.g. a virus, sustained exposure to mould, or a tick bite (leading to Lyme Disease). For example, the progression of mast cell activation syndrome could be signalled by the worsening of food sensitivities for an individual.

Diane’s personal health story

Diane created her website as a means of education and advocacy about the independent science research being conducted on mast cell activation syndrome. Her own story is really about the extreme end of the spectrum of MCAS and is one of resilience, persistence and hope – a great source of inspiration for anyone experiencing MCAS symptoms. Diane’s multi-dimensional health problems persisted over 46 years. Despite visiting 80 consulting doctors and undergoing “extensive evaluations” at 15 major hospitals and suffering multiple anaphylaxis attacks over 20 years, she was not diagnosed with MCAS until 2017 when she visited Dr. Ali Rezale of the Cedars-Sinai Medical Center.

Dr. Rezale and Dr. Alfin are working with Diane to improve her health overall. In the meantime, Diane is working on writing a book titled, The MCAS and Covid-19 Theory: A Multidimensional Epigenetic Phenomenon. As an experienced medical researcher and author who suffered long-term symptoms of MCAS, she is well-qualified to document her story and the growing body of relevant scientific research. Diane provides draft copies of early chapters of her book on her advocacy website.

My health story

I have experienced multiple “hits” as described by Dr. Kelly McCann. Having had asthma as a child, I am prone to respiratory problems and allergic reactions. While I overcame the asthma by the time I was 12 years old, since then I have contracted pneumonia three times, RSV (Respiratory Syncytial Virus) three times and Covid-19 in 2021. In 2017, I experienced major eczema covering my whole body, following 8-weeks of intensive antibiotics to heal an infected leg (resulting from an operation to remove a melanoma). Since then I have experienced continuous food sensitivities and allergy which are increasing in breadth and depth to the point that there are very limited things I can eat or drink without negative side effects.

Dr. Kelly McCann explains that there are two things going on with MCAS – a trigger(s) and reaction(s). Both need to be addressed. In terms of food triggers, I can relate to Dr. Kelly McCann’s comment that she was gluten-free, dairy-free and unable to eat a long list of foods. As Kelly suggests in her presentation, I have been undertaking an elimination process trying to identify specific foods (especially those high in histamine or salicylates) that cause aggravation of my symptoms so that I can remove them from my diet.

In regard to reactions, Kelly argues that there is a need to dampen the hyperactivity of the immune response. My naturopath, Dr. Mark Shoring, agrees with a tentative diagnosis of MCAS in my case, and recommended initially a course in Chinese skullcap (Scutellaria baicalensis), a herb identified by Mt Sinai Health System in New York as being “used in traditional Chinese medicine to treat allergies, infections, inflammation, cancer, and headaches”. This treatment, along with Turmeric, is designed to dampen down my hyperactive immune response. So, my somatic strategies, at the moment, include identifying and eliminating aggravating foods and drinks while simultaneously calming the inflammatory response of my immune system.

Mind-body connection and healing practices

Kelly maintains that she experiences the influence of the mind-body connection everyday in her clinic when working with patients. She points out that the impact of mind-body connections is developed through our early family and developmental experiences. Unfortunately, we are often prone to misperceive these experiences or develop false beliefs that lead to emotional problems such as low self-esteem and emotional dysregulation. She argues that we have to envisage the health challenge confronting people with MCAS in terms of a three-legged stool – Mast Cell Activation, Limbic System Activation (our emotional centre) and Vagus Nerve Dysfunction (the main nerves of the parasympathetic nervous system).

Kelly mentions a number of practices that can help retrain the limbic system to get our “mental/emotional loops” and habituated behaviour under control, e.g. Dynamic Neural Retraining System, the Gupta Program and Cathleen King’s Primal Trust Program.

Vagus Nerve Dysfunction can lead to people with MCAS becoming stuck in fight/flight/freeze behaviour which can impede healing. Kelly maintains that the approach required here is stimulation of the vagus nerve to help people to get “back into parasympathetic rest and digest”. She suggests approaches to achieve restoration of balance, e.g. breathing exercises, meditation and devices such as EmWave, HeartMath and Rezzimax. Kelly mentioned that she uses mind-body techniques in her clinical practice when the person she is treating is receptive to these approaches.

Reflection

I think it is important to remember that MCAS impacts each individual differently. The impacts are influenced by our biology and the number and severity of what Kelly calls “hits”. There are so many confounding variables involved that self-diagnosis is likely to mislead us. However, this should not stop us from being proactive, e.g. identifying and reducing or eliminating our triggers. Actively seeking to grow in mindfulness can help us to stimulate the vagus nerve, activate our relaxation response and overcome negative thoughts.

Reading about Diane’s experience prompted me to revisit my naturopath and discuss his diagnosis of my food sensitivity and allergy experience. He explained that his recommended treatment approach was based on the assumption that I was experiencing MCAS.

During one of my Creative Meetups, also attended by Diane, we listened to a reading of William Stafford’s poem, The Way It Is. Listening to this poem and the subsequent discussion in the Meetup group prompted me to write a poem about my food sensitivities and allergy:

The Inflammatory Thread in My Life

There are many things I can’t eat
fruit, gluten, dairy and red meat.
I feel left out that I can’t share
even with delicious family fare.
I crave something sweet
but the cost is too steep.
Hives and rashes make me really itchy
legs and feet are shamefully icky.
Wine is off the table, not that I am unable
it’s the swollen ankle, that renders me unstable.
The endless cycle of elimination
to discover the source of inflammation.
It’s harder to share a meal with my wife
what I’ve done for forty years of my life.
Covid-19 has a long arm
it’s still doing me harm.
Almond croissants are my passion
a loss of consciousness my reaction.
Butter was a food sensitivity
It’s now a dangerous allergy.
Food and drink are tainted rewards
a mindset change to move forward.
It’s a long journey with a clear destination
It takes patience, perseverance and dedication.

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Image by Ingo Jakubke 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 and the resources to support the blog.