ASEQ-EHAQ

Does Anyone Care
Renée Gabrych

Lack of accommodation for a disability
Ginger Major

I am tired of living in hell
Olly Gabrych

Housing Crisis for People with MCS
Line

The Stolen Life
S. Shepherd

Dead But Alive
What is sensitivity to chemical products (MCS)?
Sylvie Haché

Nowhere to Run, Nowhere to Hide
Muriel Létourneau

When Life Becomes a Nightmare
My story of living with multiple chemical sensitivities
Danielle Castonguay

I Suffer Too Much, I Can’t Keep Quiet Anymore!
I feel inspired by a mission
Line

When the “Invisible Illness” becomes Visible
Or – Monster Lady Comes for a Visit
Lisa Edelsward

The story of a teacher
Marlene

Living with the Feeling of Being on borrowed time
Isabelle Martineau

MCS: A Life-Altering Disability
Ruth Woitowitz

Existing (NOT “Living”) With Multiple Chemical Sensitivities
Ruth Woitowitz

One of the Lucky ones!
Debra Aronson

My Illness Journey
Sophie M.

.

.

.

.

My Illness Journey

Sophie M.

I grew up in an old farm house with only a few oak trees in the front yard and always a field of cow corn beside it along with other crops. It was fun to watch the planes spray the field of corn swooping and diving, like the barn swallows.    Today, the barn swallows are gone, as are the crop dusters that were common in my childhood.   

When you have never really been healthy you do not realize you are ill.    As a child, tights and other synthetic fabrics would result in rashes.    When I slept, I sweated so much that the wooden head-board on my bed went white in three spots.    At seven my hair started changing; becoming darker, oilier, and limp.    And more rashes were occurring.    My nose was constantly congested, and my ears often full of wax.    By then, I had been diagnosed with dyslexia: so, brain fog was a normal part of my day – just gazing off then coming back to myself.   

At twelve years of age, I flew to Europe and spent a month living with my pal’s family who had moved to a small village by the sea.    My diet and environment changed, my acne disappeared, I felt more alive, and then I came home.    A few months later I had my first menstruation.    It was black and painful. Within the year I was at the children’s hospital.    My teenage years were forced menstruation every two months through prescription medication, creams for worsening acne, which eventually became painful bumps on my scalp.    At sixteen my Dermatologist left the province and soon after I stopped seeing my Obstetrician-Gynecologist (OBGYN).    I stopped all treatments.

I remember my first few months of University partly for the stink of the pollution.    It was hard to breathe or rather, I would hold my breath as a walked across the street past idling cars.    After several months, I did not smell or notice the pollution.    I tried to swim at the pool to stay fit but in the end I stopped.    The chlorine caused severely blood shot eyes and congestion, and I did not feel well.   

Eventually, after over a year with no menstruation I went to the campus medical clinic.    The OBGYN diagnosed me with Polycystic Ovarian Syndrome (PCOS).    I went on the birth control pill, which was also supposed to fix the acne issues and initially, sort of did, though the acne slowly returned over time and was worse.    Within three months of starting the pill I saw a surgeon for lumps in my right breast.    Thankfully, they were fibrosis.

I developed more visible PCOS signs on my body, along with shorter and blacker menses.    My brain fog worsened.    I was always tired.    My sense of smell and taste buds dulled.    I had lots of nasal congestion at times, and rashes on my arms that slowly took longer to heal, as they became larger covering more skin.    All of this happened over a ten-year period during which I completed my degrees, worked, and tried various birth control pills.    Eventually, I pleaded with OBGYN’s to stop the pill, but was told not to due to the risk of ovarian and uterine cancer. 

My Healing Journey

I turned to a licensed Naturopathic Doctor (ND) and stopped taking birth control pills.    Various blood tests, and several elimination diets helped and with time I learned I had a sulphite allergy along with several chemical and igG food allergies. Thankfully, just removing various foods from my diet along with using biological cleaning products without harmful chemicals ended the rashes and brain fog.    Unfortunately, the nodular acne on my scalp, face, and even ears, improved more slowly.    Eventually, my ND recommended I see a Medical Doctor (MD) who specialized in Environmental Medicine (EM). This EM helped me figure out my allergies to chlorine, lectins, and much more.    It has taken more than ten years to reach the health I enjoy today.

I spend weekends cooking; every meal is made from scratch.    As much as possible, I purchase organic food, soaking all fruits and vegetables in water with a bit of baking soda, to remove pesticides.    Before I cook or drink, my tap water it is filtered and an activated charcoal stick added to purify it. I do my best to avoid chemicals in my hygiene products, and block the cigarette smoke from the apartment below by regularly applying grout to all cracks.    I own white T-shirts now, as I no longer turn them yellow from sweat after just one wear.    Perfumes and heavy fumes of any sort are avoided.   

Unfortunately, I don’t believe I will ever be cured.    At a conference, I walked into a washroom and almost vomited, the room reeked of chemicals.    After I was done, breathing as little as possible, I collapsed in the first seating area I found.    Half an hour of sipping water and mindfully breathing, stabilized my spinning head and cleared the congestion that started.    The exhaust fumes on the drive home started a migraine, so I am grateful a colleague drove. Thankfully, I do not live or work in the city.    As a result, heavy fumes can usually be avoided but I am cautious with public washrooms.   

My menses occur every 29 days, a gorgeous red colour.    So long as I avoid all dietary and chemical triggers, my skin and scalp remain clear of acne.    It is lonely at times; socializing is difficult because of the scented products people wear and clean with.    My food sensitivities and allergies, including caffeine make socializing even more challenging.    Even the residual chlorine on herbal tea bags can provoke symptoms, and this means that often, only water is safe.   

I wish children’s hospitals had EMs on staff and that it was easier to find them. Mine retired and my family doctor does not know who to refer me too, let alone understand the treatment plan I’m on. Thankfully, with careful budgeting and planning I can afford my ND’s services.    I wish salt water swimming pools were common, putting my feet in a chlorinated pool quickly results in what my niece and nephew call vampire eyes.    Lastly, it would be wonderful if hospitals were a safe place for people with Multiple Chemical Sensitivities (MCS) and my other allergies.    My past experiences make me reluctant to seek their care.