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!

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

Green Juice for Life.

My Environmental Physician wants me to eat between 8-11 servings of organic fruits and vegetables (mostly green) a day, which is a LOT. I thought I was eating a lot of vegetables before, but apparently, I was not.

It is easy to get between 5-7 servings of veggies in my morning smoothie, which really assists me in reaching my daily nutrition goals.

I start with a base of chard juice. I use "juice" lightly here because I do not have a juicer. All of my smoothies and juices are made in a Osterizer from the 70s. Whoever told you that you need a plastic

Vitamix to make good smoothies and juices, was totally lying to you!

Base green juice:

Chard - lots of it. Remove stems to use for cooking and slice leaves thinly

Fresh Tumeric Root

Fresh Ginger Root

(Sometimes I add other greens too, such as spinach, wheatgrass, etc)

Fill blender with lots of green veggies (as much as you can fit in there - push it down) and then pour boiled water in blender to blanch veggies, stir and let sit for 6 minutes and then blend. Pour into jar, let cool and refrigerate.

I make this juice every 4-6 days. There is always some in the fridge. I also use it to cook with from time to time (instead of adding water).

In the freezer:

Frozen raw spinach

Frozen raw strawberries or blueberries (I am on the FODMAPs nutrition program, but you could use whatever fruit you like)

Frozen raw parsley stems

Frozen raw spinach stems (essentially, I keep all stems from any veggies in the freezer)

Frozen steamed carrots

And then I put it all together:

Green base juice

Frozen spinach, fruit, parsley, carrots

PLUS

Additional ginger root, hemp oil, apple cider vinegar, juice from half a lemon, almond or hemp milk, one and a half handfuls of raw sunflower seeds and a banana and BLEND IT!

Sometimes I empty the contents of a pro-biotic capsule in as well.

I drink a litre of this juice everyday (at least for the last two months).

I keep and use my blender in my "off gassing" room, which is the mud room at the back of our house. The motor gives me reactions, so I can't use it (or most other appliances) inside the house.

Yum.

Organic Food Box Program

My partner and I grow a lot of our own food and we only eat organic produce.  We aim to eat all locally grown food, but that is not always possible given the climate of the region.  Unfortunately, our local health food store is filled with essential oils, incense, candles and scented personal care and cleaning products, which means that I can’t enter the store.  Even more unfortunate is the fact that the produce they sell in the store are also covered in the scents and I have become increasingly sensitive to it. 

Ugh.  Always something.

The good news is that we discovered that we could order a food box directly from the organic farm that supplies all the local health food stores with produce. The farm also imports organic produce through the winter months and so we can have fresh produce all winter long and they deliver to the door!  Amazing!

source: http://www.organicangels.com/templates/images/home-top-view.jpg

My first food box delivery update: 

I left the cash in the mailbox so that I didn't have to open the door.  Unfortunately, I opened the door too soon after the delivery truck left and a waft of vehicle exhaust fumes came inside the house, so I wound up brain fogged and symptomatic. Ugh. I decided I'd be safest to wear my mask while unpacking the box because it was hard to tell if the box itself was contaminated from being in the truck. The foodbox had a number of printed materials in it, which are problematic for me, but one of the printed items was a $10 coupon for the next box, so that was great! I put all the printed materials in the mud room (which is my off gassing room) and put away the veggies. I didn't even attempt to smell the veggies because I was still recovering from the waft of vehicle exhaust when I opened the door. 

Here is the feedback I will be giving the delivery service:

1) Do not put printed materials inside the box

2) Send receipt via email

3) Find out if I can provide them with a rubbermaid bin that seals to use for my deliveries

4) Minimize use of plastic bags

And a note to self for next time: Leave the box outside for at least 15 minutes after the truck leaves to ensure that the air has cleared. 

Overall, I think that this service is going to be a great thing for me, but there are certainly some kinks to work out.

Envisioning a Symptom-Free Future - Recovery Goals

Back in April of this year, my health started to improve after a solid six months of significant illness. In my writing, I often refer to this period as the “collapse”. My body was in utter chaos and my symptoms left me housebound and bedridden. It is next to impossible to think about “recovery” when your body is in chaos and there appears to be no end in sight, but in April I began to envision a symptom-free future.

This is from an entry in my journal dated April 16, 2014:

What does my life look like when I am 80% recovered in six months?

1)  I am spending time outside, enjoying fresh air and travelling to visit places that I love - lakes, rivers and camping.

2) I am dancing and entertaining in my home.

3) I am going to a job that I love every day.

4) I am working towards my goals of owning land, building a natural/safe home and growing food.

5) I am riding my bike.

6) I am shopping for clothing and furniture.

7) I am in a restaurant eating food.

I can remember how hard it was to actually write down those goals and to vision what my recovery would look like. I remember feeling embarrassed by my own goals. By how small they seemed. How simple I’d become. I’d taken my entire life for granted and I just wanted it back. It felt uneasy to dream of riding a bike when I couldn’t even get out of my bed, but I felt compelled to vision it. I felt it was important for me to recognize what recovery looked like and felt like, so that IF it ever DID happen, I’d know it was happening!  I certainly wouldn’t want to miss that!

My “Recovery Date” was October 16, 2014 and while I haven’t accomplished everything on my list, I can honestly say that I reached my goal of 80% recovery.  I actually don’t have a lot of power over the remaining 20% of my recovery because my illness is chronic and is not going away. I am also quite a bit at the mercy of the people I come into contact with and the state of the environment around me. I still end up incapacitated and bedridden after exposures, but I recover from them faster than I used to. I still don’t go many places and I still can’t spend time at my school or other public places. I still have to evacuate my home from time to time when unexpected construction takes place in my neighbourhood. I still require all of my accommodations and I am still living with an invisible disability.  Even so, I am 80% recovered from where I was during my “collapse” and the goal now is to STAY WELL.

I want to address each of the goals and visions separately.

1)  I am spending time outside, enjoying fresh air and travelling to visit places that I love - lakes, rivers and camping.

This summer we were able to find a lake nearby that was accessible for me and we visited it a couple of times. No motorized boats, no campfires, no smoking on the beach and daily testing of water. Managing people’s use of sunscreen was a little challenging, but we could position ourselves upwind from folks. We also went on several long bike rides on trails alongside the large river that runs through the Region. Unfortunately, we were not able to go camping, but we did pitch our tent in the backyard! Navigating campfire is going to be a bit more challenging for me. I am not able to tolerate anything ‘burning’ and the real risk at campgrounds is that so many people use lighter fluid to start their fires.  

2) I am dancing and entertaining in my home.

I have been dancing in the house with some frequency and trying to get a little bit of cardiovascular exercise every day. We have had several small gatherings of close friends at the house, but we still have not had a “party”. I used to throw some pretty epic parties! I am not ready for this at this stage in my recovery, but oh how I miss them!

3) I am going to a job that I love every day.

I am currently working full time as a Social Work intern with an amazing Coalition that I really admire. I am working from my home office, so I guess officially I didn’t achieve this goal, but I feel really good about my work right now. I also did some freelance photography this spring and summer, which was amazing and really fed my soul. I got sick following almost all of my photo shoots, which was the downside, but recovery was pretty fast and the enjoyment I obtained from photography was well worth it.

4) I am working towards my goals of owning land, building a natural/safe home and growing food.

My partner and I had a very clear 6-8 year goal to purchase acreage and start a homestead, but that goal is a little muddied now. I expected to graduate in June 2015, but now I won’t finish until December 2016. Job prospects are a little less clear now that I require accommodations. Employers aren’t exactly known for their willingness and desire to hire people with disabilities. Our reduced ability to earn money means that we need to alter this goal a little bit. For now, we have been able to make our house safe and plan on installing a heat/air exchange filter unit on our furnace in order to the make the house even safer. We are building a little homestead on the property we do own and grew food on over 350 square feet of soil. We grew and donated food to the Food Bank on one 200 square foot plot and fed ourselves from the other 150 square foot plot. Sometimes it was hard for me to be outside and sometimes I had to wear my mask. Other times, backyard fires, laundry exhaust, lawnmowers and poor air quality meant I had to stay indoors for many days in a row. There are many challenges to spending time outdoors, but I was out there. I grew my food this season and I helped to feed others and this meant the world to me.

5) I am riding my bike.

I never thought I would ever be able to ride my bike again, so accomplishing this was very important to me. I discovered that riding my bike was actually more accessible than going on walks because I could move quickly out of problem areas. Also, it is not unusual to see people wearing masks while riding a bike. I still can’t ride on the road because I pass out when I am exposed to gas and diesel exhaust, but I have found extensive and glorious bike trails that I never even knew existed!  Blessings I tell you!

6) I am shopping for clothing and furniture.

In reality, this is likely just never going to happen for me. Stores, including (especially?) thrift stores are so inaccessible. In general, new things are soooo problematic for me. I fear the day when my things start to fall apart or break. I haven’t been shopping in what feels like forever.  But I did visit some yard sales in my neighbourhood and I did order a new bathing suit over the internet. I had to soak it for days in baking soda and borax and washed it five times or so and left it outside to bake in the sun, but eventually I got to wear it!

7) I am in a restaurant eating food.

I also need to accept that this may never happen either.  Eating out is such an impossible feat for me due to use of chemical products for cleaning table tops, floors, bathrooms and windows, toxic air fresheners and scented nasty soaps in bathrooms, other customers wearing scented products, such as perfume, hair spray, cologne and aftershave, etc. as well as a lack of organic food options. I am very blessed because my partner is a chef and a baker and so I really eat very well most every day of my life. Even still, one day I hope I can eat out.  I miss it and there are SO MANY new restaurants in town that I’d love to patronize!

A lot has happened in the last six months!

I have “come out” to many of my friends about my illness since April. To be honest, I always thought that I would just get better and this would just go away and I would go back to living the life that I was living before my chemical injury, but that never happened. And even though I am experiencing “recovery”, I am still not the same and my life won’t ever be the same, but I am learning to live and love in the body that I have. I am learning my limits, my strengths and I am demonstrating resiliencies that I never even knew I had in me.  

I recognize that I am really speaking from a place of able-bodied privilege because I am now experiencing recovery. And all the blessings that I speak of are so much easier to see and experience from this vantage point. In the depths of my collapse, I woke up disappointed to be alive and in my body pretty regularly. There were many mornings where I couldn’t move at all and felt like a prisoner in my own bed, in my own body. I waited almost 13 months to meet with a specialist, but it finally happened and I finally got a diagnosis, which has been validating after being told for 18 months by my family doctor that it was all in my head. I have a clearer understanding of my illness, its trajectory, my treatment options, what my accommodation requirements look like and how I am protected by the law. I realize that not everyone is so privileged. Many people with MCS are never well enough to be able to access the services that I have accessed, let alone get a diagnosis or find a specialist or afford treatment.

I never intended to study the marginalization of people with Environmental Sensitivities or Multiple Chemical Sensitivities in graduate school, but it has been such a massive part of my life and identity, I don’t see how I couldn’t study it. I’d never even heard of ES/MCS before I got sick and I still haven’t met another person who has it, but I keep hearing about them and how they “used to be” around and how “they are not here anymore”. I want to show up. I want to participate. I want you to know that I am still here and I am still fighting and I am still working for both my own liberation and for yours - even if we haven’t met. 

I only hope that I can stay well enough to get it all done.