CALL TO ACTION - Support for the Ontario Centre of Excellence in Environmental Health (OCEEH)

CALL TO ACTION! 

Please consider sending a letter or an email in support of the proposed Ontario Centre of Excellence in Environmental Health (OCEEH).

Sample letter below!

Learn more about the OCEEH - click here.

"About 5% of Ontarians, more than 568,000 people over the age of 12, suffer from ES/MCS (environmental sensitivities/multiple chemical sensitivity), ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome) and FM (fibromyalgia). These already large numbers, which represent only those who have been diagnosed with these conditions, are on the rise.

The proposed centre of excellence will be composed of a hub that will include, and expand on, the Environmental Health Clinic (Women’s College Hospital); and spokes delivering primary care, which could begin with a patient-population-based selection of Community Health Centres."

"At present, more than 568,000 patients with these conditions lack the normal rights, benefits, policies, programs and facilities that Ontario makes available to those with conditions of comparable severity and prevalence.

The OCEEH will advocate for appropriate services and care to be developed and integrated into our health care system at all points along the normal continuum of care; and for normal rights and benefits to be extended to people living with these conditions as appropriate to their disabilities."

Read more about the Vision and Mission 

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Letter/Email writing campaign - learn more here.

Sample Letter: LETTER TO HON. ERIC HOSKINS

Put your name and address and date at the top of the letter below, or write your own.

Hon. Erik Hoskins, Minister of Health and Long Term Care
ehoskins.mpp@liberal.ola.org

In November 2013, a business case proposal for the Ontario Centre of Excellence in Environmental Health (OCEEH) was submitted to the Ontario Ministry of Health and Long Term Care. It was titled: Recognition, Inclusion and Equity: Solutions for Ontarians living with Environmental Sensitivities/Multiple Chemical Sensitivity, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia.

The proposal and its supporting documents set out the urgent need for a comprehensive network of care and support and a much better quality of care for Ontario patients with these conditions, as well as other chronic, complex environmentally-linked illnesses; and for the creation of new research and education capacity. At present, more than 568,000 patients with these conditions are without these services in Ontario.

As a voter with (name your illness)/ concerned about (name illnesses), I urge you and your government to immediately implement the recommendations of the business case proposal for the OCEEH. Both lives and money can be saved by proper treatment of these increasing illnesses. Only in this way will Ontario patients with chronic, complex environmentally-linked illnesses, currently excluded from and neglected by our health care system, benefit from appropriate care and support, just as others with illnesses of comparable severity and prevalence do.

Yours truly,

Sign here

Copy:
Hon. Glen Murray, Minister of the Environment and Climate Change gmurray.mpp@liberal.ola.org
Premier Kathleen Wynne kwynne.mpp@liberal.ola.org
Other MPPs as you like
Christine Elliot christine.elliott@pc.ola.org
France Gelinas fgelinas-qp@ndp.on.ca
MEAO – info@meao.ca
Go to this link to find your own local MPP and put name here:
http://www.ontla.on.ca/web/members/members_current.do

Canary Rarely in the Classroom

Do you find it strange that this blog is called “Canary in the Classroom”, but I rarely ever actually write about school? My experiences as a student as my experiences as a person with a newly acquired invisible disability go hand in hand. I first got sick in May 2013 and I started my program in September 2014. After 7 weeks of being in the classroom, I became extremely ill and ended up entirely bedridden for two months. I finished my first term remotely, including all of my presentations and group work. Following that first term, I was quite ready to drop out of the program. I was discouraged and I was so sick I could barely move. Attending full time classes at my school was an impossible feat.  I was vomiting in the bathroom on a regular basis.  I was nauseous, dizzy, uneasy on my feet and too foggy to even speak in class. Staff, faculty and even visitors were wearing fragranced products. My classes were full of students covered in fragranced personal care products, the dry erase markers, the burning sage from smudging ceremonies in the Aboriginal Faculty, the cleaning products, hand sanitizers, scented garbage bags, poor ventilation in areas with computers and printers, freshly printed materials in every class and everyone’s brand new books, highlighter markers...etc.  It was just impossible. I wasn’t getting anything out of my classes because I was literally a fog-brained-zombie sitting in classrooms filled with “chemical soup”, unable to speak, process or think. I was spending almost all of my good mental energy sending emails and trying obtain support of some kind. I couldn’t go near my books, let alone bring them into my home or READ them.  I was fading fast.  It is not a wonder that after two months I collapsed into a health crisis. At that point, I didn’t have an accommodation plan beyond the posters that were put up and the emails that were sent around by the Diversity and Equity Office. 

By the end of that first term, I was ready to drop out and had convinced myself that there was really no way that I could be successful in the program. I had one professor who really took my concerns to heart and responded with a great deal of compassion and took great effort to understand my concerns and also communicated my concerns to other faculty and students. At the end of that first term, he called me to discuss my experiences in the faculty. I was in tears as I expressed all that I had gone through that term and how sick I was. He knew that it was my intention to do a thesis on the subject of ES/MCS and he suggested that the part time program might be more manageable for me and he agreed to supervise my thesis if I chose to continue on in the program.   

Every part of this illness has been one big painful loss after another big painful loss.  This illness has taken most everything in my life that I cared about and in those early months I did a lot of grieving about it. It didn’t help that my doctor told me I was mentally ill. Nor did it help that I was generally met with disbelief and my experiences were almost constantly delegitimized. Switching to the part time program signified that my career goals were radically shifting and that I had to reconsider everything about my education goals and about what sort of work I would be able to do in the future. ES/MCS has literally controlled and determined everything about my life and experience since I acquired it and it is painful to have to succumb to it.  It is like having your free will taken from you and suddenly, you can’t just do what you want to do anymore.  Ultimately, I did choose to switch to the part time program and I also switched my academic focus from clinical to community, planning, policy and organizations (CPPO). It had become clear to me that I was unlikely to ever be able to work directly with individuals and families in a clinical setting. I also chose to do a thesis, which was not a mandatory part of my program, in fact, very few MSW students do a thesis.  I chose to do a thesis for a few reasons, first and foremost I will be honest and say that a thesis exempted me from four classes and frankly, the less time I am in those classrooms, the less time I am going to be incapacitated, which is my number one priority. Secondly, I had spent a lot of time researching and learning about ES/MCS since I’d become ill in May 2013 and it just made sense for me to continue to do what I was already doing. Also, it was becoming clear that I needed to use my time in school very carefully and try to establish some sort of niche or speciality for myself in social work. As a social work student, I have been encouraged to practice a great deal of reflexivity and to consider how my social location and positionality intersects with my experience as a social worker. ES/MCS and the experience of being discredited, devalued - othered - has dominated every aspect of my life since May 2013. Finally, it is glaringly obvious to me that there is a massive knowledge gap in the literature about the lived experiences and marginalization of people living with ES/MCS. It is profound to me how little people know about it, including professionals working in the field of disability and accessibility. I feel like I have had the burden of having to educate everyone around me about ES/MCS and about how to best support and accommodate me. It has been an exhausting process and journey, especially considering I didn’t even really know exactly what was happening to me until my very recent diagnosis in October. Completing a thesis provides me the opportunity to focus my attention on ES/MCS and to hopefully make a difference in the lives of people with ES/MCS in some small way by adding to the literature and improving conditions in my school. I didn’t choose this thesis, it chose me and we are still working out the details. I only hope I can be well enough to get it all done in time.

I haven’t been writing much about my experiences in the classroom because I am either too sick (going to class) or I am just too busy (trying to keep up).  I haven’t actually been in the classroom since last spring! Yes, it has been almost a year, but I have kept a journal where I have written down my various experiences when I was in the classroom. I am going to try to write more about my experiences, both good and bad in the classroom in the coming months.

Exercise, Sweating, and Nutrition

Over the last five months, I have developed a regular habit of exercise on the recommendation of my Environmental Physician. I participate in a minimum of 20 minutes of a sustained 108 heart beats per minute - six days a week, no matter how badly I feel.  The only exception is when I have migraines because I literally can’t do anything during those stretches of time, which can last 24-72 hours and render me completely incapacitated. When my doctor suggested exercise, I have to admit I was really annoyed with him. I just spent all this time describing my symptoms of fatigue, lack of balance, nausea, dizziness, and musculoskeletal pain and there he was telling me to jump around and get my heart rate up? The audacity!

The truth is that I would do just about anything that he told me to do because he is a very well respected physician, so I made a strong intention to follow his suggestions and treatments with diligence. Much to my surprise, he was right. Exercise really helps me to manage my fatigue and increases my energy. It also creates new pains in my body that make it harder for me to tell the difference between pain caused by my illness and pains caused by working out. Somehow I am experiencing this as positive?!

My body doesn’t sweat. I never realized that this was an issue until I met with my Environmental Physician five months ago. I always thought I was just lucky! I was always that person in the crowd who didn’t sweat at the gym, at the beach, or while dancing at the club in my youth. My clothes never got smelly and I didn’t need to wear deodorant. Ends up that I am not so lucky after all. Sweating is one ways that the body detoxifies itself. My detoxifying system is already challenged and so not being able to sweat just creates a whole other issue for my health! The good news is that last week, after five months of hard cardio workout - I FINALLY SWEATED! This is a massive success for me in my recovery.
 

In addition to exercise, I have also started visualizing and talking to my cells. To be clear, my doctor did NOT suggest this to me, but it came about as a result of our time together. He had drawn a picture of a cell, to assist him in describing the dysfunction of my mitochondria to me. This image imprinted on my mind’s eye and I refer to the image especially during cardiovascular exercise to try to stimulate my mitochondria and support the cells in doing their metabolic work!

Another key aspect of my current recovery has been getting my IBS under control. I was diagnosed with IBS several years ago, but I really hadn’t figured out how to manage it. My Envrionmental Physician suggested the FODMAP nutrition protocol and it has literally changed my life. He also educated me about how my ES/MCS is related to the inflammation in my guts. FODMAPs has transformed my guts in a profound way. The main culprits for me were onions and garlic. Every meal I have ever made or enjoyed eating started with onions and garlic! Removing these two foods from my nutrition regimen has paid off in big massive ways. IT IS ALL ABOUT THE GUTS! I have worked hard to reduce inflammation through nutrition and supplements and I have increased my green vegetable intake to between 8-11 servings per day. I have also increased my good fats, amino-acids, magnesium, and fermented foods. My nutrition is spot-on these days and the last five months of committed focus has really paid off. I really have my doctor to thank for that.