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!

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.

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.

Migraineville & Coming Out of the Dark

My home is generally safe for me, but it has not been for the last few weeks. There has been so much construction in my neighbourhood as projects are all rushing to get road work completed before the snow flies. I was having exposures from the constantly idling trucks and heavy-duty construction vehicles spewing diesel fumes day after day. My house is well insulated, but it is not impermeable. When it is toxic outside, it is also toxic inside. And when it is toxic, I am unable to do much of anything because all of my body systems descend into chaos on account of the whole 'canary' thing.

The construction was completed on Wednesday of last week and by Thursday I was well enough to focus on my work and put in a solid day. I have to take advantage of my brain function when I have it, because I just never know how long I will have it for. Things took a turn for the worst on Friday when I became incapacitated by a migraine. Migraines are certainly my least favourite symptom of all (with the exception of losing consciousness, because that sucks a lot too). 

http://headwisewoman.blogspot.ca/2011/01/creativity-keeps-me-sane.html

 I only ever had one migraine in my life prior to the onset of my illness and now I visit 'Migraineville' much more frequently. This weekend, I was essentially incapacitated from Friday evening until Monday early afternoon, but today I felt better – a LOT better. 

It blows my mind a little when I think about how my health can literally go from 0 to 100 (or the other way around) in a matter of hours and how confusing it must be to the people in my life. But when I feel better, I feel great! My energy levels, my brain capacity and my spirit just soar and everything is on.  

I often get migraines 24-hours following a significant toxic exposure. They last anywhere from 1 hour to 36 hours and they are entirely disabling. I literally cannot do anything but lay in a dark room and suffer it out. It is very boring. At least during a typical reaction, I can function well enough to feed myself, bathe, watch a movie, call a friend...but in Migraineville there is literally nothing but passing time, relentless pain and darkness. 

It is a total drag.

Coming out of that darkness can be a little overwhelming because when my health does return, I am really over the top happy and filled with so much joy and energy. It can seem extreme and confusing to people around me because usually people get sick and stay sick until they get well again and then they go on with their lives. I am not sick in this way. I am well and then I get sick and then I get sicker and then I get well and then I get sick and then I get really sick and then I get better and so on. 

I have been thinking a lot lately about the term ‘episodic disability’ – but that is a post for another day.

Yours in light, today.

 Canary in the Classroom.

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.