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.

Hairspray & the Threat of Physical Harm

(Note: I am emotional and am working with limited brain capacity)

Second week of classes left me incapacitated for 36 hours. Twenty-seven of those hours were spent immobilized with a crushing migraine and unable to do anything. I had to have a friend come over and feed me because my partner is currently overseas. Overall, my recovery time was less than last week, but the migraine intensity was much worse. This week there was someone sitting close to me that was wearing so much hairspray, it created a toxic cloud of pollution in the classroom. I think hairspray might be the worst of all the mainstream personal-care chemical offenders because is it formulated to stick to everything in its range. I always get crushing migraines following exposures and the inside of my sinus membranes burn for hours, even after rinsing. It is torturous.

From: http://www.encino411.com/index.php/resource/page/are-hairspray-and-nail-polish-toxic

I could have asked the person wearing the hairspray to move and sit somewhere else. I could have said that I have an ‘allergy’ to their hairspray. People seem to understand the concept of ‘allergy’ more than they understand toxic encephalopathy. But I did nothing. I didn’t even put my mask on. I sat with my face in the stream of air blowing out of the air purifier and covered my face as much as possible and tried to mentally convince myself that everything was ok.

It is not ok.

 So far over the last two weeks, I have spent 5 days bedridden and incapacitated from attending school. This is greatly interfering with my mental capacity and ability to work on my thesis research. I am currently averaging a two day recovery period. This week, when my migraine came on I wept and questioned whether or not it was worth it at all. Is this degree really worth the illness that I am suffering?

It is critical for me to be able to speak up about my needs on a moment to moment basis within the classroom, but it doesn’t feel safe. Both this week and last week, there were opportunities for me (or others) to speak up, but we didn’t – I didn’t. It has been established that my school is meant to be a scent-free building. It has been established that my classroom is specifically required to be scent-free as part of a disability accommodation and yet, people continue to enter into these spaces using and wearing scented/fragranced products that cause injury to me and others.

It is an insidious and silent form of oppression that creates inequities in the classroom and other public spaces. The habits and norms of personal grooming goes largely unquestioned by our beauty-obsessed society. It is a topic that feels personal and uncomfortable, but it is important to address because the use of many scented/fragranced products create restrictive forces and barriers that immobilize and marginalize groups of people. My life has already been greatly diminished by having a disability. Oppressive and invisible forces within institutions further diminish my opportunities to follow my life plan.

I want to be able to show up in the classroom and learn alongside my colleagues without the threat of physical illness. I feel afraid to speak up because I do not want to offend others or make them feel uncomfortable about their personal care product use. I want to be able to count on my allies to speak up on my behalf, but my allies are few and far between and I am learning (from my research) that they, like me, do not know what to say or how to respond to this form of oppression.

I must find my voice in all of this. And I must be able to call out people who are making safe spaces – unsafe, even if it means that I might not be well-liked. I just want to be able to move through this life and be free from threat of physical harm. This illness has deeply ‘othered’ me and marginalized me from my communities, my friends, my colleagues and barred me from indoor public space. By going to school, I am actively putting myself into a situation where I am being physically injured. It is a very vulnerable position to be in when people hold so much power over my health. 

I realize that it is my choice to go to school. I just don’t want to go through all of this and have no one even notice that I was there or the extent of the illness that I suffered as a result of having been there. I don’t look sick. I don’t look disabled. And no one sees or knows that I spend days bedridden with crippling pain when I leave the school.

Silence is no longer an option.

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.