June 19, 2015
June 08, 2015
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.
Letting go.
~*~*~*~*~*
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