My Thesis Available for Download - Students' Experiences of the Scent Free Initiative

September to May of 2017 was a blur for me as I was extremely ill while completing my Master of Social Work thesis - but here it is! I did the thing!

Link -----> Students' Experiences of the Scent-Free Initiative at the Faculty of Social Work <----- Link
Go to page and click "download" on the right hand side.

Thank you to all of you who have supported and encouraged me throughout this process, especially other folks living with ES/MCS from online groups who offered me unconditional support through some very challenging times. In the coming weeks, I hope to create some more bite sized snippets of my research, to make it more accessible. This thesis is quite long and dense, but contains some important intersectional knowledge about how people respond to the access needs of the chemically injured.

Abstract:

This research project sought to explore how students experienced the introduction of a scent-free initiative within the Faculty of Social Work at Wilfrid Laurier University. An intersectional, critical disability approach is used to understand participants' experiences and to identify gaps in implementation, as well as recommendations for future policy development. Working from a transformative paradigm, this study used a mixed methods design, including an online survey and in-person focus groups. Findings indicate that social work students felt well-informed about the initiative, however they did not feel adequately knowledgeable about how to embody the initiative via scent-free practices. Participants expressed stigmatizing attitudes toward individuals with Environmental Sensitivities/Multiple Chemical Sensitivities (ES/MCS), highlighting a need for further education related to this disability. Overall, the implementation of the initiative went well, however there were a number of identified gaps including education, culturally responsive implementation, and clarity of the policy. The findings of this study suggest that policy needs to shift language from "scent-free" to "fragrance-free". Recommendations are provided for moving toward the full implementation of fragrance-free initiatives and policies at the Faculty of Social Work (FSW) and beyond. Implications for social work education, practice, and policy are addressed. Finally, this study has implications for the use of intersectional and critical disability theory within social work.

Computer Trouble

I am now in the last term of my graduate program and really feeling the stress of looming deadlines. I don’t have the capacity to push myself, there is nothing more to push. My body not only protests, it also revolts! There is no option to push through, work harder, do more, suck it up…
I must be ready to submit my thesis for review by the end of this month, so it all needs to start coming together now! I really got off track with my project this summer when I lost tolerance to the computer that has been safe for me throughout my program. Something went wrong with the machine during the heatwaves and since then, it just runs hot all the time. The heat from the machine off gasses a fume that sets off my reactions. I spent the majority of my summer trying to find alternatives and experimenting with various borrowed laptops, and being sick from experimenting. Seriously. That is how I spent my summer. I finally settled into something that was working for me in the fall term, but that involved working outside in my three season room. Now that it is winter, it is not an option to work out there. Moving inside to work on a computer that makes me sick has been a bit of a nightmare actually. Losing tolerance to computers puts so much of what I CAN do, at risk. I use the computer to communicate, hold video conferences, write papers, write letters, read journal articles and books, attend classes and appointments. It is the tool that has allowed me to continue to be connected to the community, and to make a living. It has been heartbreaking for me to lose tolerance to it and it has made finishing my project very complicated and overwhelming. And now facing deadlines…
Oy!
You just can’t imagine (unless you live with this!)
My partner, who provides a great deal of both tangible and emotional support for me will be away during the month of January due to a family emergency. This means that I will working through this month, getting sick on the computer, and also having to manage our household alone. Luckily, I have amazing people in my life who are willing to help pick up groceries, run errands, do the shovelling, which will make a huge difference for me. I am extremely privileged to have that. Many people with ES/MCS do not have that, or some have had it in the past, but slowly lost their supportive community over the years. I recognize my priviledge in having a partner.
It has been a challenging time and will continue to be a challenging time. I could really use some extra support, boosts of confidence, love, and validation right now because I am not even actually sure I can do this thing that needs to be done.
The last 50 yards are always the hardest, I know – but this feels almost impossible. I am trying to be open to the prospect of failure and convincing myself that failure is a valid option, and so is “good enough”.
I am so ready to be moving forward. This year, I will need to continue to explore computers that I might be able to tolerate, or I will need to just give it up entirely. In some moments I feel relieved at the prospects of living my life without a computer, and other moments I feel horrified. My body really just needs a break from computers and maybe once all of this is done, my body will recover from these exposures and I will be able to continue use the computer as my access tool again in the future. That is my hope.
In the meantime, I need to buckle down and flesh out my chapters, manage my health, and maintain my nutrition. I need to work extra hard to take care of myself and listen carefully to what my body has to tell me. This will pass. My partner will return. I will finish this project and it will be ‘good enough’. I will not have to pay for an addional tuition and all of this will be behind me by spring!
I hope.

I Fired my Doctor

I would describe my relationship with my MD as antagonistic. We have not had a very good experience together since ES/MCS and I have a lot of negative feelings about her, about bio-medicine, scientific inquiry, evidence-based research, reductionist paradigms – really the entire medical industrial complex leaves me reeling!! Bio-medicine has its place and has certainly contributed a great deal of good to the world. My MD did some things right and she did some things very wrong and the wrong that she did was harmful and her responsibility was to ‘do no harm’.

I can still see her pleading with me, “don’t do this.” Like I was making everything up and just needed to stop with the playing around. She treated me like a child and told me about how SSRIs helped her when she was going through some stuff and assured me it could help me too.

Are you even listening to me?

Have you heard anything that I have said?

I get that you are in a hurry and that you needed to move on to your next patient. I know that all the tests came back negative. You could have told me that you didn’t know what was going on or that you would continue to work with me to find answers. That is not what you did. Instead you delegitimized my experience and threw “I practice evidence based medicine” around and topped it all off with a mental illness diagnosis.

It’s all in your head.

Is not something that a person who has suffered a great deal of physical pain, to a person who didn’t leave bed for months, who could barely walk or function, had to leave their job…wants to hear.

It isn’t in my head, its in my body.

The tests weren’t giving up any evidence and there was only one conclusion – it’s in your head.
It took me 18 months to finally find a doctor who could diagnose me and provide some direction and treatment. It took me 18 months to see a doctor that knew the right tests to order and came up with a very different perspective.

It’s not in my head actually. And you need to do a better job as a MD, because you suck at this and maybe you should check out some MainProC courses to supplement your shitty medical practice, so that maybe in the future you won’t harm your patients.

It is standard practice for a patient to be called in for an appointment to review results following test results or diagnosis and reports from other specialists. But you didn't call me in when the results from the environmental physician arrived. I didn’t hear a word about it and I know they were sent to you.
Was this just another way to avoid dealing with me?

This antagonistic relationship has created a huge barrier for me and has kept me from getting medical treatment over the last three years. I started getting letters from the government reminding me that I needed to have my pap done – its been three years.

There are so many things that I would like to say to my MD. I have been very angry at her for a very long time and it has done neither of us any good. She continues to go about her ‘evidence based medical practice’ and my health is put at further risk. I have learned a lot through this process about medicine and health and I need a MD that is going to work along side me, in a partnership. I need a MD that will do the tests that I request, and refer me to the specialists that I want to see, and to advocate for me when I need it. I need a MD that will do their research on topics they perhaps don’t understand and most of all, I need a MD that will admit when they JUST DON’T KNOW.

‘I don’t know’ is a perfectly reasonable answer! It is an honest answer.

Three years later, I have a little more perspective on everything. And I have set out on my own healing journey and have seen a 85% improvement in my health. I have learned about many different kinds of healing and paradigms of health, including plant medicine. Now I have some perspective and I see that you and I, we’re just not working from the same paradigm and we will not understand each other. This relationship is just not working out and I think it is time for me to move on.

I have learned a lot about myself and my body in the last three years, which I hope will make the transition to my next MD easier. I have a good idea about what I need from an MD and I have a clearer understanding of what they can and can’t do, which will help me manage my expectations within the relationship. But at a core level, if you believe that I am mentally ill and that all of my physical symptoms are the result of a mental illness, we will not be able to work together.

We now know that the immune system and brain are connected. People have neuro-immune illnesses that are environmentally linked and triggered by our increasingly contaminated planet. There is a huge population of people living with ES/MCS, CFS, ME, FM who are not receiving adequate health care and are living isolated, dispossessed lives. Collectively, we make up a larger portion of the population than those with medically validated health concerns such as heart disease and our illnesses receive less funding for research than male pattern baldness.

It is simply no longer acceptable to me to have a dismissive MD. There is plenty of ‘evidence-based’ research on the biological basis of ES/MCS. Many emerging illnesses have been contested at some point in their history, but nearly 30 years have passed now. It is time to get with the program here. ES/MCS is not new. It is also not RARE.

Enough time has passed. Enough research has been conducted. Environmentally linked illness must be fully recognized and we need to be challenging and critiquing our current bio-medical paradigms in order to adequately deal with the storm of emerging illnesses arising from our contaminated environments. Multi-system illness and disease exists and is very real despite reductionist bio-medical science and practice.

Deal with it!

At the very least, the time has come for me to leave this unhealthy and harm-filled relationship with my MD. I feel relieved and empowered in making this choice.

It feels pretty badass to fire your doctor!

Feeling a Little Angry These Days

I have been managing a lot of feelings lately. I feel so angry that social service systems ignore our basic needs like the access to basic income and safe housing. And that our accommodation requirements are somehow seen as optional and even whiny. That our need for safe materials in housing is portrayed and characterized as some sort of bourgeois attitude when in reality we are just trying to survive. We must have non-toxic environments just to stay alive. Safe housing is right up there with life's basics like air, water, and food for people with ES/MCS.

We actually aren't just trying to impress you with our knowledge of chemicals and which building materials and consumer products are non-toxic. We are not trying to sound entitled or classist. We aren't trying to sell you anything. We know this stuff as a matter of SURVIVAL. We are people who are sick and have been forced to very quickly learn to stay alive in an environment that is literally draining the life from our bodies. I realize that the 'green movement' is very classist and inaccessible to the vast majority of people and that non-toxic consumer products are viewed as 'specialty items' or somehow 'luxurious'. Only the rich and entitled should have access to such items. And here we are sick, disabled, and dispossessed, making demands for access to such items! Who do we think we are!? Why are we so special that we believe we have the right to demand expensive non-toxic materials?

The bigger issue is - WHY ARE THERE SO MANY TOXIC PRODUCTS and ingredients in consumer products and building materials?! This shit is making us sick and some of us are getting sick at a faster rate. We are living in deeply contaminated built environments and ecosystems, including our food systems.

I am so enraged that the very social service agencies that should be protecting marginalized folks are actually actively oppressing people with ES/MCS by denying necessary services and access to basic income and safe housing. And these are the sorts of social service agencies where Social Workers are employed. It is very challenging for me, both as a Social Worker and a person who is disabled by ES/MCS to not BE VERY ANGRY.

End of Coursework Reflection

I am in the home stretch of the coursework of my graduate program and I am having a lot of mixed feelings about it. It has been a long, hard road that has been deeply complicated by ES/MCS. A long strange trip, indeed.

I have one last policy paper to hand in and I am finished. I will still have another year of practicum and of course, my thesis. But I will not need to attend classes and subject myself to exposures that leave me incapacitated for days. There was a 9 month stretch last year, where I didn't have any in-person classes at all and my health improved tremendously. I have a great deal of hope about getting back to that place.

School was a good alternative to working, because I simply wasn't able to continue at my job after I acquired ES/MCS. It was impossible. Even with the various accommodations that I negotiated at work, it wasn't possible for me to continue to be employed. School allowed for flexibility in my schedule that made it possible for me to heal and recover. I was able to utilize telecommunications and Skype to attend lectures when I was unable to function. Once I was able to get a diagnosis (a year into my program) my accommodations increased tremendously, for example, air purifiers to my specifications were purchased for use in my classrooms. Diagnosis also made it possible to access a treatment protocol and I had a better sense of what was happening with my health. Eighteen months is a long time to be really really sick and have no idea why it is happening or how to get it under control.

In retrospect, being in grad school was the best option for me through my illness. The stakes are just not that high in grad school. Worst case scenario, you get a bad mark or have to rewrite a paper. In all of the jobs that I have ever had, the stakes have always been very high. I was employed in the field of social work for 12 years before going back to school. I was doing direct service/front line work and that is simply not an option for me anymore. Returning to school offered me the opportunity to develop new skills, update my theoretical knowledge base, and have a recovery-based educational sabbatical. I was not only exhausted and burnt out from my years of front line work, I was also profoundly sick and disabled by the neuro-immune symptoms of ES/MCS. My life, seemingly overnight, became very very small.

There has been a great deal of uncertainty for me in recent years as I move through my recovery. I am used to dreaming really big and working really hard and making things happen. I am used to being able to make a good salary and feeling independent. Managing expectations has been an important part of recovery for me, because the reality is that I am not the person that I was and my life has been altered in massive and significant ways. Finishing school and moving into the next stage of my life feels very uncertain for me, but I am better positioned with a fresh Masters of Social Work degree than I was with a 12 year old Honours degree in Psychology and Religion.

I am going to miss the classroom and the insights that I have gained. I am going to miss the conversations and social aspects of being with others who share my perspective. I am going to miss the Professors who inspired me and believed in me and encouraged me to stick with it when everything inside of me was begging me to just stay in bed and fade away. This illness has been very isolating for me. It has been a struggle to keep up with my readings and writing my papers when my brain function comes and goes like the wind and I have to spend days on end in the dark.

It is sort of a miracle that I made it through the coursework at all! Oy! I don't want to jinx myself - I do have one policy paper left and 200 hours of practicum AND MY THESIS left to do. I guess I shouldn't be too quick to attribute my success to a 'miracle'. 

What is left for me to complete can all be completed from home, with the exception of some focus groups that I will be holding as part of my thesis research. I will not have to attend campus with any regularity and that is a huge relief for me. It will make it a lot easier to manage my life and my health. When I have a term with a class, I can't do anything outside of going to class. This results in four months of being homebound, having very minimal visitors, spending many days and nights incapacitated, and struggling to complete my readings, do my research and write my papers. 

Nothing about going to the school has been easy. I had to negotiate a disability identity in order to access the accommodations that I required. This was a very confusing experience for me and I didn't always feel comfortable identifying as disabled, and yet, if I didn't I couldn't get the accessible learning and accommodations that I required in order to continue with my studies. In hindsight, I can say that perhaps grad school was also the best place to be negotiating a disability identity. I have had to negotiate many marginalized identities throughout my life and adding one more to the long list has not been easy. Social justice, critical and disability justice, transformative and environmental justice frameworks have really empowered me and provided me with theoretical tools to make sense of my experiences. School has been a relatively 'safe' place for me develop knowledge, practice skills, and expertise, while I recover from ES/MCS. 

I have worked long enough in my life to know that grad school is not anything like the 'real world'. Not in any way. I recognize the privileged position of being a student and a researcher within an academic institution. As I move closer to the end of my program, my uncertainty about the future becomes increasingly salient. It took me five terms to figure out how to use my privilege as a student and how to be successful as a student and now it is all coming to an end. Out in the 'real world' my marginalized identities will be much harder to negotiate. I know this very well. I have no illusions about higher education.

Did I mention I was having mixed feelings?

Life as a student has become a sort of manageable way to live. I have a lot of access and equity support, and accommodations. I have been able to do research that interests me and is relevant to my life and my communities. I have been able to establish myself as an expert among academics and educate others about ES/MCS. School has helped me feel validated in my identities, even my marginalized ones.

I have to be perfectly honest and say that I have no idea what comes next. But I do know that it will not involve working inside of an hermetically sealed building with poor air quality and circulation. 

And that is a reason to smile :)

Dr. John Molot at Toronto Public Library

Dr. John Molot, Environmental Medicine Specialist and Author is going to be giving a talk at the Toronto Public Library on Wednesday, December 2, 2015 at 7pm.
If you have the chance, it is very worthwhile to hear him talk.

Ongoing Challenges with Essential Oils

One of the most common questions that I get is related to whether or not I can tolerate essential oils. The answer is no, I am not able to tolerate essential oils since my chemical injury. My brain is unable to tell the difference between a synthetic fragrance and an essential oil. The vast majority of essential oils on the poorly regulated market are riddled with solvents and pesticides. Even when I am exposed to high quality, therapeutic grade, organic essential oils, I still have reactions and become very ill.

After having a really positive experience at a lavender farm, I decided to experiment with some controlled exposure to Lavender EO, as well as Peppermint EO in my home this Spring. One of my dearest friends and chosen family is an aromatherapist and she mailed me very high quality oils from her apothecary for me to experiment with. I chose peppermint and lavender because they are plants that have close contact with and because they are known to be helpful in treatment of migraines (which I suffer endlessly with).

Unfortunately, I wasn’t able to tolerate the essential oils and my experiments have not been successful. I will continue to work at this in my recovery, but I think that EO medicine is too potent, too concentrated and impacts my system with too much immediacy.

I just can’t tolerate it, but that doesn’t mean that I never will…

Before I got sick with ES/MCS I used essential oils all the time. I have learned that I also likely misused them a lot and likely sensitized myself to oils because of the many ways that I misused them. I was never clear about about how much you are supposed to dilute them. I also used the same oils year after year after year, without switching things up. I didn’t use oils as medicine, I used them as perfume. Essential oils are too potent to be used in this way. They are powerful medicine and need to be used with great care and under the guidance of a certified aromatherapist.

Personally, I think that essential oils should never be worn as perfume or diffused on the body in shampoos, lotions or creams. They are medicine that are meant for individuals. Like other medicines, they shouldn’t be shared with everyone around you. Your medicine is between you and your essential oil. There is no need for it to be spread around to people who may not need the medicine. 

I guess you might be asking yourself, "why bother experimenting?" The truth is that I experiment because one of my dearest friends and chosen family is an aromatherapist. It has been very challenging to share space with her over the last two years, but it is a major priority in my life. It is important for me to recover enough to be able to not have reactions when in her presence. She has also made a lot of changes to be able to spend time with me and so I am just trying to also do my part, in as much as I am able.

When people respect your access needs, it is an act of love and a form of collective care that has transformative power!

I can’t recover alone.

I am endlessly grateful for the people in my life who really work hard to accommodate me.

Lavender Fields & the Possibility of Space

Last Summer, my partner and I were driving down a country road and came across a small Lavender Farm. By small, I mean their plants are only 4 years old. It is a very new crop for them. I was intrigued by the cute purple signage and picturesque landscape of the farm, so we decided to drive in and check it out. It was late August, and the lavender was not in bloom, but they had a store inside of their the barn. I was feeling brave and decided to go inside and much to my surprise, I didn’t have a reaction! There I was having this deeply sensory experience that wasn’t making me sick. That day really marked a big big step in my recovery. The farmer showed us around the farm and explained the distillation process and the history of the land and his family’s connection to it. There was a huge outdoor distiller and the rows of lavender grew in the background. I was awestruck. I thought it was literally the most beautiful place I had ever seen and all at once, I imagined my life magically unfolding in purple fields as I stood there intoxicated with the place.

The possibility of place is really powerful when you don’t belong and there isn’t any place for you. When everything around you makes you sick and leaves you holed up in a room with an air purifier for days. When you can’t even walk around your own block in your neighbourhood without getting sick. When you can only access your own backyard for a short time, a few days of the week. The possibility of there being a place for me brings me to tears.

It makes me cry.

That lavender farm represented ‘place’ for me.

We bought two 1st year lavender plants from the farm and took them home and planted them in the garden. I fantasized about lavender for many months to come and occasionally stuck my nose into  a jar of lavender tea over the winter months to inhale it and remember the day and the place (again without reacting). Winter came and I started germinating lavender seeds inside the house. I was inspired by the plant and I experienced great calm and pleasure while envisioning row upon row of of purple. I germinated soooo many seeds that I ended up not having enough space for all the plants when Spring came and had to give them away!

The lavender plants that I grew from seed are already bigger than the plant (now in its second year) that we got from the farm! They are doing so well. I hope they all survive this coming winter. I love lavender plants. They don’t don't like to be fussed over and coddled indoors. They want to be in the earth and left alone once rooted. Best plant ever. The farmer told me that lavender is not easy to germinate from seed, so I guess I am doing something right.

I love germinating seeds indoors during the late winter. It fills me with hope for Spring. It connects me to the earth during really isolated times. Last winter was particularly hard on me. Our neighbourhood has a lot of homes that use wood stoves for heating and unfortunately, I am extremely intolerant to burning wood, burning anything really. Burning in general causes me to have reactions. Between the wood stoves, the excessive idling of vehicles, diesel fumes from snowblowers and the small flood in our basement last winter, I was pretty sick, housebound and holed up with my air purifier. I am always grateful for indoor growing and the chance to touch earth and watch seeds come into being. It is especially satisfying during those long, late winter days when everyone is quite ready for Spring!!  In many ways, I think I might even love the germination of seedlings better than the actual plants once they are in the ground! I love new baby plants!

Lavender has played an important role in my recovery and my healing journey over the last year and for my birthday all I wanted was to return to the Lavender Farm, surrounded by people who love me. I wanted to have a picnic beside the purple fields and to walk slowly up and down the rows of lavender. I wanted to bring together people that I felt supported by during the last two years and share space with them. I didn’t actually know whether or not I would tolerate the lavender fields when they were in bloom, but it seemed worth the risk to me. Luckily, the day was perfect. I felt loved and supported. I don’t know if everyone really knew how much the day meant to me or not. There haven’t really been parties in my ES/MCS world, so that day was pretty special to me and was certainly the highlight of the last two years of my life.

I was happy.

I felt loved.

I was born in strawberry season, but in the years to come, I would like to always celebrate my birthday during lavender season instead.

Love.

Group selfie from the my Lavender birthday party.
That is me, in the front wearing the red hat. We are all blinded by the sun!

Documentary - The Sensitives Kickstarter

Filmmaker Drew Xanthopolos has recently launched a Kickstarter campaign to help complete his documentary film about living with Multiple Chemical Sensitivity.

Drew spent over three years following three families whose lives have been altered by MCS and hopes to show how ordinary people are driven to the fringes by this highly misunderstood medical condition. He hopes to create both awareness and empathy about the experience of MCS that is often dismissed.

You can pledge support at bit.ly/SensitivesDoc.

2nd Year ES/MCS Anniversary Update

It was May 1, 2013 that I became TILTED and experienced the health crisis that I am still recovering from. That first year was marked by body rebellion, full chaos and profound uncertainty as I met with several specialists and underwent test after test after test. I was flailing through day to day life in a dazed neurological fog. I negotiated a number of necessary transitions during that first year. My partner and I moved into a house that was safer than our previous apartment and we worked very hard to completely detox our lives. I had to leave my job because the building that made me sick became entirely intolerable to me. It was not an option to continue to work, so I started graduate school. It was a very confusing time and I was very isolated from family and friends. I was not only housebound, but also mostly bedridden and unable to function for many weeks and sometimes months at a time.  I wasn’t sure if I was dying, or what the hell was going on and no one else seemed to know either, including all of the specialists I’d seen. 

 Our current medical system is poorly equipped to deal with multi-system illness, nor is it equipped to deal with the broad spectrum of illnesses that are arising as a result of our increasingly toxic environment. New paradigms are emerging, but change is always slow and we all know that matters related to the environment are not a priority for our current government. And sadly, those of us at the front end of this public health crisis are not going to get what we need from our family doctors and until more research dollars are allocated to environmentally linked illness, we will continue to be delegitimized. The good news is that the province has provided $560,000 to support annual fellowships over three years, which we result in six new fellowships for family medicine graduates. This will allow graduating physicians to take an extra year for training in Environmental Health. This will translate to more health care for folks with environmentally-linked illnesses in Ontario and it shows that the Federal Government is aware of this health issue and is at least starting to take steps to address it. It gives me some hope.

         The second year of my illness has been marked by medical diagnosis, increased knowledge, healing, disability accommodation, and moving towards finding joy in my ‘new normal’. I had 10 solid months in my graduate program where I was working from home on my internship, an online course, and my thesis. This really allowed me the opportunity to have some control over my exposures and keep them to the bare minimum. I met with the Environmental Physician whom I’d waited 18 months to meet and thankfully, I wasn’t disappointed. I was deeply honoured to find that I was meeting with a Physician whose work I was familiar with through my research. He spent five hours with my partner and I and he really shed a lot of light and clarity for us. I made a lot of major lifestyle changes in the last year at the suggestion of my Environmental Physician.

Prior to becoming ill, I was already consuming a mostly (65-75%) organic diet that was comprised of what I thought was a healthy dose of vegetables. My Environmental Physician (EP) suggested that I should be eating 100% organic all the time and that I needed to consume between 9-12 servings of vegetables and fruits everyday. I have multiple nutritional deficits and malabsorption issues and so the idea was to just blast the body with what I have come to call “dense nutrition”. It is a lot of work to eat that many vegetables and fruits and so I have had to work really hard at it. I have spent and continue to spend several hours a week doing food preparation and meal planning in order to meet my “dense nutrition” goals. I finally gave up the only two non-organic foods that I had been clinging to for a long time - potato chips and take out burritos. This was not easy for me to do, because over the course of the last two years food has been very challenging. My partner and I used to really enjoy eating out and it is simply not an option for me anymore due to cleaning products used by restaurants, questionable food ingredients, lack of organic options, poor ventilation, and fragrances worn by other patrons and staff. We continued to eat ‘take away’ food on occasion, but I have given that up too. It just isn’t worth the damage it does to my guts. What I miss about eating out was more about the social aspects, than the actual food. The food we eat at home is superior in quality because we know exactly where it comes from and it is impossible to eat out when you have food restrictions.

           I was living with IBS for many years prior to becoming TILTED, but when I got sick it spiralled out of control. I was just a ball of inflammation and almost everything I ate made me sick. I have been struggling with chronic, widespread inflammation as part of my illness. I developed a number of food sensitivities and went through a major elimination protocol and had to give up a wide variety of foods for a really long time. This year, I learned a lot about how my IBS is connected to my ES/MCS from my EP. He introduced me to FODMAPs nutrition protocol and this has literally transformed my gut health over the last 9 months. In fact, I have been able to start eating a wider range of foods and returned many previously not-tolerated foods back into my diet, which has been glorious. It has been a long long road to gut health, but I have truly accomplished a great thing and am very pleased with that aspect of my healing. Even though at times it has felt very restricting to go through this healing process with my guts, in the end it has been worth it. The reduced inflammation in my guts has decreased my reaction times and ES/MCS symptoms and has increased my overall enjoyment and relationship with my food. YES!

Cardiovascular exercise has become a huge part of my recovery over the last nine months and was also recommended by my EP. I can still remember how angry I was with him when he suggested that I exercise, especially in light of the fact that I had been bedridden for months at a time. But I was and am very committed to my recovery and his reasoning made sense. Many doctors prescribe oxygen therapy for folks with ES/MCS. My EP was open to prescribing oxygen to me, but he wanted me to try cardiovascular exercise first because it does have the same impact, which is forcing more oxygen into the bloodstream and cells. I started off slowly and worked my way up to 20 minutes/day of cardio, five days a week. Over the last 9 months, I have added a lot of core and strength training to my workouts. This has strengthened my heart, given me more energy, improved mitochondrial function and just made me physically stronger overall after spending the better part that first year in bed. I am simply not as active as I used to be because I don’t go places. I have to make a daily effort to move my body, work my heart and practice healing visualizations.

It took many months, but I have finally triggered my sweat response and I sweat on a regular basis now. This is a major breakthrough in my recovery because sweating is one of the important ways that the body removes toxins from the body. I didn’t realize how problematic it was that I did not sweat, because throughout my life I thought I was just lucky! Most folks with ES/MCS have poor detoxification systems and have to work hard to assist the body in that process. Many folks use sauna treatments for detoxification, but this was not an option for me because they are often made of cedar and are in places where there are pools that use chlorine, both of which I am unable to tolerate.

Meditation practice has been an important part of my recovery over the last year, although, in truth, I was only practicing 20 minutes a day regularly for a total of three months. I found that I really struggled with this practice because it was hard on my knees to sit for extended periods of time and I was also experiencing barriers related to practicing alone. I felt really isolated in this practice, didn’t have anyone to talk to about challenges that I was facing and it was also triggering other issues for me. After three months of solid practice, I gave it up and started cross stitching, which essentially gave me the same benefits of calming my upregulated nervous system.

I started a new treatment protocol under the care of my EP, including a wide array of amino acids to address my mitochondrial dysfunction, as well as a number of vitamins and other supplements which have been having a positive impact on my health as well. My partner and I purchased a good quality all metal design air purifier for our home, which has been so life-altering.

Obtaining a formal diagnosis has lead to increased disability accommodation at my school, which has made attending classes much more tolerable. At my request and support of my doctor, the Accessible Learning Center purchased two air purifiers for my classrooms and this has made a huge difference for me in the classroom. They also purchased non-toxic dry erase markers for my classrooms, which has has been massively helpful as well. I also have printing accommodations and am able to receive library books in alternative format. Accommodations continue to be a work in progress and it is certainly not perfect, but the Accessible Learning Center and the Diversity and Equity Office have made my graduate school experience possible. We have come a long way together since first term, when I had a major health collapse after attending classes for six weeks.

In all, my health has improved tremendously in the last year, however, I have really had to re-define ‘health’. Despite the fact that I feel I am 70-80% improved over last year, I am still mostly housebound. I am bedridden and unable to move at least 4-9 days out of the month with extreme musculoskeletal pain, neurological fogginess, and crushing migraines. I am still unable to travel, access public spaces and walk safely in my neighbourhood. This year I have come to discover that this may just as good as it gets and am learning to accept that maybe this is my new normal. I have had moments of frustration because I have worked so hard to get well and have followed every single recommendation, protocol and prescription of my EP. I have been fully dedicated to my health and wellness and have literally done everything within my power to recover. It is my full time job. I literally spend HOURS and HOURS of my week engaged in all of this healing activity and sometimes I just feel discouraged, like I should be healed by now! I keep expecting that ES/MCS is just going to go away and become a distant memory of a bad time in my past, but that is just not happening.

Which brings me to the present day.

As I look toward this coming year, I really want to start focusing on finding empowerment with what is, instead of continually hoping this is going to go away. I need to accept that this is my new normal and that while I can experience varying degrees of health, my life is just not going to be what it was. Two years later, I am still mourning the loss of my life and my lifestyle and I just don’t want to live with the burden of those losses for the rest of my life. There are so many people out there with this illness who are wayyyy sicker that I am, take for example Amelia Hill in Australia. Her story is just heartbreaking and yet, she manages to be so positive and inspiring. 

In September, I will be completing an internship with the Diversity and Equity Office and will be developing educational resources on ES/MCS for the University as part of that placement. I will continue to collect and analyze data for my thesis and continue to build my professional identity as a social worker living with ES/MCS. I hope to have more opportunities to engage my school community around access barriers related to indoor air quality and synthetic chemicals. I hope to find my voice and confidence in my experience instead of wishing it away all the time. All along, I have just wanted it to go away and to not be something that I had to think about, or talk about in my life. I have been embarrassed by it. Most of the healing activities that I take part it are motivated by my wish to make it go away because I do not want to have this illness. I do not want to talk about it. I do not want to explain it. I do not want to have to educate anyone about my experience. I don’t want my experience. But if there is anything that I have learned this year, it is that I can’t blast it away with nutrition or exercise or meditation or supplements, or yoga etc... These are all activities that will promote and support my health, but will not take away my chemical injury. I would like to come to a place where not everything is about making it go away, but rather learning to live well with it and to live a fully authentic life as I am, not how I wish I could be and not how I was.
Letting go.

~*~*~*~*~*

Links: 

http://drclaudiamiller.com/about-tilt/

http://news.ontario.ca/mohltc/en/2014/04/building-expertise-in-environmental-health.html

http://johnmolot.com/wp-content/uploads/2014/11/John-Molot-CV-2014.pdf

http://www.cdhf.ca/bank/document_en/32-fodmaps.pdf

http://www.foustco.com/airpurifiers.html

http://www.ecosmartworld.com/non-toxic/

http://m.adelaidenow.com.au/news/south-australia/amelia-hill-is-a-prisoner-in-her-bedroom-allergic-to-the-modern-world/story-fnpp66pk-1227346910484