Tag: rash

Managing A Flare-Up from Fish Poisoning

Flare-ups are a common occurrence with Mast Cell Activation Syndrome (MCAS) – triggers (such as food or chemical intolerance) can exacerbate existing symptoms of immune hyperactivity or be a catalyst for new symptoms to occur.  Managing these flare-ups is a constant challenge for someone like me who has MCAS, as their occurrence is often unpredictable and, sometimes, confounding.

Creating a story from a single object or event

At our October Creative Meetup, an online group for writers-with-chronic-illness, we were introduced to the idea of writing a story from an object.  Our facilitator, Jennifer Crystal, showed a video of Billy Collins reading his poem, Lanyard, as an example of how this is done.

The idea of focusing on an event or object is also illustrated by Melissa Febos in her book, The Dry Season, a memoir about her conscious choice of twelve months of celibacy after a tempestuous time of cyclical relationships that proved to be harmful to her health and self-esteem.  In particular, she focused on her “maelstrom”, a two-year toxic relationship with another woman that proved to be controlling and destructive and was the catalyst for her chosen period of celibacy. 

Throughout her memoir, Melissa revisits this event (story object) to highlight its impact and to serve as a benchmark against which to evaluate other potential relationships.  Her period of celibacy was designed to provide sufficient distance from the maelstrom to facilitate self-insight, overcome her fear, find herself again (having suffered from “the-need-to-please”) and to achieve peace with her experience of the maelstrom.

Creating my story of a recent flare-up

At our Creative Meetup, we were encouraged to write our own story using one or both of the following prompts:

  1. Make a list of five prompts you associate with your story. Pick one and write about it (poetry or prose) OR
  2. Write something (poetry or prose) that includes all five objects.

I chose to address the second prompt and drafted a poem around the five objects I identified that were associated with my recent flare-up:

fish, hives, rash, poisoning, pain

The poem that I have included at the end of this post is the outcome of my writing and reflection as well as the group sharing and discussion that occurred during the Meetup session.  Participants shared their writing and their vulnerability in stunning prose and poetry (given they had only 20 minutes to write their story). 

A flare-up from fish poisoning

My story began with having Red Emperor, a wild-caught fish, for dinner. I am allergic to soy so I avoid farmed fish that are typically fed on soy products.  I thought it would be safe to eat the Red Emperor as it is not farmed but wild caught in deep waters such as those off the coast in Northern Australia.

What I experienced, however, is an immediate reaction to the Red Emperor (unlike previously where I had eaten it without negative consequences).  My body reacted strongly this time – resulting in a bright red rash on both upper arms, accompanied by itchy hives and a burning sensation on my affected skin as well as night sweating and headache. 

This led me to do personal research on “fish allergy”.  What I established is that there are two major forms of fish poisoning:

  • ciguatera poisoning
  • scombroid, also known as histamine poisoning.

My first thought was that I had experienced histamine poisoning given histamine intolerance stemming from my MCAS chronic illness.  However, on further research, I established that the reaction is more likely to be caused by ciguatera poisoning.  The symptoms of each form of fish poisoning are similar but the causes differ substantially; a distinctive symptom of ciguatera poisoning is “extreme itchiness” which was my experience. 

Histamine poisoning is caused by bacteria developing on dead fish that have been stored ineffectively (e.g. not deep frozen or stored on ice).  Ciguatera poisoning, in contrast, results from the food chain which commences with small fish eating marine toxin produced by algae in reefs and being consumed by larger reef fish which are then consumed by humans.

Ciguatera poisoning is more common in fish that live in warm waters and “spend some or most of their time in reefs”.  Red Emperor is explicitly implicated in carrying this form of fish poisoning.  Freezing, cooking or cleaning do not destroy the ciguatera toxins.  The presence of ciguatera toxins are not visually detectable, nor can allergy to the toxin be detected by allergy testing.  

Recovery from ciguatera poisoning

A disturbing fact is that ciguatera poisoning symptoms can recur without further exposure to a poisoning source.  The likelihood of symptom recurrence is increased by drinking alcohol.   Recommendations for recovery include avoiding fish for at least 6 months and abstaining from alcohol for 3 months after eating the toxic fish.

A detailed article on ciguatera poisoning in the National Library of Medicine maintains that relapses in symptoms “may be triggered by consuming alcohol, nuts, seeds, fish, chicken, and eggs”.  The authors advise that “patients should be counselled to avoid fish, caffeine, alcohol, and nuts within 6 months of poisoning”.

The itch and burning sensation from ciguatera poisoning made it difficult to sleep despite the use of Dexeryl – “an emollient cream that reduces irritation, itching and scratching”.  Eventually, I had to resort to using Eleuphrat, a type of Cortisone cream, to reduce the itch and pain and enable me to sleep.

I have had a series of flare-ups since the initial contamination after eating Red Emperor.  The first was following a glass of wine; the second after eating a salmon and avocado sushi roll.  Others involve accidental consumption of egg or chicken.  Research has shown that farmed salmon, typically used in sushi, can lead to ciguatera poisoning because of toxins in the fish food. 

One of the problems associated with fish poisoning is that you can tolerate a particular type of fish at one point and yet at a later time react severely to eating it, sometimes with fatal consequences.  For example, a newspaper report recounted the case of a father-to-be who collapsed after eating barramundi at a restaurant and died five days later in hospital.  He had experienced tingling in his mouth a few years before when eating barramundi.  A Victorian health website identifies barramundi as one of the more common causes of fish allergy.

Reflection

It is easy to jump to a conclusion re the cause of symptoms without undertaking the necessary research and/or seeking medical advice.  The problem of accurate diagnosis of symptoms is compounded by cross-contamination and the commonality of symptoms (e.g. hives and rash) among various food allergies. 

For example, consumption of coffee can cause a rash and itchy hives resulting from histamine poisoning caused by impurities in coffee such as  “molds, mycotoxins, pesticide residues, yeasts, and other biogenic amines”.  Purity Coffee seeks to provide quality coffee beans and a coffee process to avoid these issues and enable people with MCAS and histamine intolerance to have their regular coffee.

We can be more mindful of the factors influencing our symptoms if we take time to research and reflect on our findings and related experiences.  As we grow in mindfulness, we can become more self-aware and conscious of what is impacting our body and develop creative ways of achieving recovery from ill-health.

I developed the following poem In reflecting on my experience with ciguatera poisoning:

The Flare-Up

Flaring up like a campfire flame,
fighting feverishly a toxic invader.

Redness spreading across swollen ridges,
a painful path of itch and burning sensations.

Awash in a sea of marine toxins,
overwhelmed by a challenged immune system.

Elimination diet a testing time,
complex interactions of food and drink.

Seeking answers through research and inquiry,
wild caught fish traced as the trigger.

Unanswered questions,
uncertain future,
unpredictable outcomes.

Where is my anchor?

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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 Thomas 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.

Writing a Reflective Poem to Manage a Chronic Illness

I participate each month in a writer’s group for people experiencing chronic illness and/or disability.  We meet online on Zoom and undertake reflective writing following a stimulus piece (e.g. a poem, a song or short story) introduced by our facilitator.  We then share what we have written, being open about our challenges and the feelings we experience in dealing with them. 

An added benefit of our Creative Meetups is the willingness of participants to share their strategies for dealing with their difficulties.  While we each have quite unique health conditions, we are readily able to relate both to the feelings expressed by others and the strategies they share to overcome any negative self-talk.  Through the online Meetups, we can see other participants from around the world and progressively build relationships with members of the group.

The facilitator for our Creative Meetup group is now Jennifer Crystal, author of One Tick Stopped the Clock.  Jennifer is a story coach with The Health Story Collaborative that hosts our monthly Meetups.  So we have the distinct advantage of having a facilitator who is experienced in narrative therapy and teaching people how to write for healing.

Reflective poems: a strategy for managing chronic illness and associated feelings

One of the participants in our January Creative Meetup, mentioned that he writes a reflective poem as a means to “tell himself what to do” when he is overcome with difficult feelings such as anxiety or depression.  As an amazing piece of synchronicity, I had done exactly the same thing the night before the Meetup.

I was beginning to get frustrated with the constant flare-ups of dermatitis, set off by my multiple food sensitivities, when I began to ask myself, “Why do I keep eating things that I know will cause a flare-up of dermatitis?” Through the reflective poem, I was able to stand back, look at the consequences of my actions  and form the resolution to behave differently.  My recent reflective poem has enabled me to find light in the darkness.  The poem acts as a “bridge to action” in the face of inertia.

The Creative Meetups are a great stimulus to write and share our stories and the group provides ongoing support for behavioural change.  The insights gained from the stories of other participants are invaluable.  I have found, too, that I invariably write a poem after each Meetup – which is helping me to grow in self-awareness and to address unresolved issues in my life.  For example, I have written the following poems stimulated by activities of our monthly Meetups:

Healing through storytelling

Jennifer Crystal’s book, One Tick Stopped the Clock, epitomizes the healing power of storytelling encapsulated in the Creative Meetups.   She shares her feelings of being frustrated with the medical profession (it took 8 years to obtain a correct diagnosis of her chronic illness), how she had to develop a new identity and find ways to achieve self-care amidst her debilitating experience.  The strategies she employed to manage her challenges and difficult emotions included writing and pacing herself.  Jennifer’s proactivity, like that of participants in the Creative Meetups, act as inspiration for me to take action on my own chronic health condition.

Like Jennifer, I initially sought the advice of my General Practitioner only to find that the issue of allergy was outside his area of expertise.  However, to my frustration, he did not inform me that the clinic had a doctor who was trained in immunology.  After searching the profiles of the clinic doctors, I found a doctor who had a PhD in immunology and had worked in a number of hospitals as an immunologist. Through her referral, I had an appointment with a specialist who was a clinical immunologist and allergist.  Once again, my proactivity led me to unearth an erroneous assumption that I had made. 

The immunology specialist pointed out that I did not appear to have Mast Cell Activation Syndrome (MCAS).  He explained that there were two levels of Mast Cell Activation – mine related to Level 1 which was largely confined to the skin and was reflected in dermatitis.  He stated that MCAS, the syndrome level, was more episodic and systemic (including symptoms such as diarrhea, brain fog, breathing difficulties and digestive problems).

Reflection

I have been trying to manage my chronic condition of an overactive immune system but recently a tick bite set me back considerably as my dermatitis flared up resulting in a short time at the Emergency Centre of a hospital.  My feelings of frustration at not being able to eat a wide range of foods were generating a sense of helplessness. 

I have found that writing a reflective poem helped me to identify what was in my control and to face up to the actions I needed to take to redress my symptoms.  As I grow in mindfulness through reflective writing, I am gaining increased self-awareness, tapping into my creative energy and generating momentum for positive behavioural change.

The following reflective poem flowed from Creative Meetups and related storytelling and shared wisdom:

Managing Chronic Illness Mindfully

The chronic condition:
immune system overdrive,
comfort and pleasure turned to discomfort and pain.

Focusing on deprivation:
makes it more difficult,
harder to avoid the breakouts.

The brief taste sensation:
gluten delicacies enticing temptation,
causing skin damage.

Setting off micro-implosions:
lasting rash, hives and itch,
discomfort magnified by frequency.

The body keeps the score:
registering every aberration,
exacting its toll.

The way forward:
openness to “what is”,
bringing light to depressing darkness.

Paying attention to the body:
listening to the body’s wisdom,
breaking free of emotional blackmail.

Buying time to heal:
avoiding alcohol and sleep deprivation,
eliminating causes of flare-ups.

Reducing the need for cortisone ointment:
protecting the body’s skin barrier,
restoring immune equilibrium.

Mindful awareness growing inside:
opening to nature’s beauty,
savouring life-giving breath.

Discerning the locus of control:
identifying what I can change,
acting on this insight.

It’s time to rebuild:
exercising and osteopathy,
walking and Tai Chi.

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Image by Melanie 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.