Tag Archives: MCS/ES

Down is Harder After Up

Alternate title: Be Grateful or Be Miserable!

I had some really good brain and body days in the early spring, enough that they left an imprint on me of how it felt to feel (relatively, and almost) normal. instead of the usual:

feels like quicksand-3

Then shit happened… (sorry, I don’t usually use language like that, but I’ve lost access to some parts of my vocabulary lately as a result of the toxic stuff I was exposed to).

Pesticides, dental infections and extractions, toxic products and materials (including trying to replace a SS kitchen kettle -simple, yes? Actually, NO), summer road work, more and more pesticides, heat,  VOCs, lack of ventilation and air filtration, which meant no ability to cook, and more…all of which resulted in some serious brain fog, cognitive problems,  and drastically reduced physical abilities.

Back to the drawing board…

After having some good days this year, I crashed again, and I haven’t been able to recover… much… There can be a few better mini-moments here and there if the outdoor air quality is exceptional and the breezes have been blowing the “right” way, but nothing like how well I was doing for a while in the spring.

Which makes it so much harder now, because I can actually remember what it was like to be more functional. It was so long ago before, that it didn’t really come into play or into my thoughts, as for so many years, I couldn’t remember what it was like to think clearly, or to function without effort, with relative ease.

Is it really too much to ask to be able to function with relative ease? To not have every thought, every action be like climbing a mountain or navigating an obstacle course?

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“Artificial scents have no place in our hospitals”

Canada’s top medical journal, the Canadian Medical Association Journal (CMAJ), says
Artificial scents have no place in our hospitals

Hospital NO Fragrance

“These patients may be involuntarily exposed to artificial scents from staff, other patients and visitors, resulting in worsening of their clinical condition. As patients,
family members and emergency physicians will attest, the attacks can be quite sudden and serious. There is little justification for continuing to tolerate artificial scents in our
hospitals.” …

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Scientists to WHO: Recognize MCS and EHS

International Scientists Invite WHO to Recognize MCS and EHS

Paris, September 4th 2015.

“Following the fifth Paris Appeal congress, which took place on the 18th of May, 2015, the attending European, American and Canadian scientists unanimously decided to create a working group and to write a Common International Declaration to request an official recognition of these new diseases and of their sanitary consequences worldwide.

The declaration calls upon national and international bodies and institutions and particularly the WHO, for taking urgently their responsibility for recognizing electrohypersensitivity and multiple chemical sensitivity as real diseases, including them in the International Classification of Diseases.

This International Declaration also asks national and international institutions to adopt simple precautionary measures of prevention, to inform populations and requires the appointment of real independent expert groups to evaluate these sanitary risks in total scientific objectivity, which is not the case today.”

2015 WHO MCS EHSThe links to download the Declaration Statement and Press Release are below, as well as the link to see the presentations that took place during the meetings in May of 2015.

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Why We Need “Sensitive” Human Canaries

“Sensitive” humans are not defective or here to inconvenience you.

maybe it is not me

Some canary history:

“Carbon monoxide, a potentially deadly gas devoid of color, taste or smell, can form underground during a mine fire or after a mine explosion.

Today’s coal miners must rely on carbon monoxide detectors and monitors to recognize its presence underground. However, before the availability of modern detection devices, miners turned to Mother Nature for assistance.

Canaries — and sometimes mice — were used to alert miners to the presence of the poisonous gas. Following a mine fire or explosion, mine rescuers would descend into the mine carrying a canary in a small wooden or metal cage.

 

Any sign of distress from the canary was a clear signal that the conditions underground were unsafe, prompting a hasty return to the surface.

 

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Who Wants to Help Me Get New Air Purifier Filters?

I need several air purifiers to clean the air of pollutants from unavoidable everyday products and materials (like the mail, receipts, product labels, food packaging, replacement of any basic essentials, etc) and also the neighbourhood pollution (trains, planes, laundry products, pesticides, BBQs, fireplace smoke, etc) from my indoor air so that my brain and body can work more like they were intended to.

To cook, clean, and take care of my very basic needs, (nothing extra going on here, I am housebound) I am dependent on clean air to be able to function. My filters need to be changed annually or every other year (depending on what the air quality has been like) and mine were last changed in 2012, three years ago.

I have looked all over the place for funding to purchase new filters and there just isn’t anyone out there with a mandate to provide clean air to those who require it for medical reasons.

! ! !

IAQ help

Last summer was a disaster for me, this year was even worse. I’ve had a horrid three  months from area roadwork and pesticide use (there was massive spraying of Wild Parsnip around this part of Ontario during the summer, and the pesticide drift got to me really bad), and now other simpler exposures that hadn’t been bothering me as much as they used to, are again having more serious adverse effects on me because my indoor air is not being filtered anymore.

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Guest Post: Euthanasia and Disability Rights

Monique and I both live in Ontario, Canada, where there are new discussions happening both provincially and federally regarding “assisted suicide”, “death with dignity”, the right to die, and euthanasia (I may have missed a few other terms used).

We both have MCS/ES, and are confronted with systemic discrimination and barriers to access with almost every breath we take. Breathing is not optional. And we are not alone. There are hundreds of thousands of us in Canada, and millions around the world.

Open letter in support of Euthanasia and Rights for those with diseases that defy accommodations

Guest Post by Monique

I Am Easy to Ignore

I am female
I am over 60
I am divorced and alone
I am a student
I have lower employability
I have invisible disability
I was abused
I have depression + ADD.
I do not feel strong

The biggest and most painful ordeal is people who lack the ability to reduce the perfumes they wear in public… who value their vanity above the good of others. I cannot exist without the kindness of strangers. I do not want to live without my Right to life-sustaining air. I do not want to explain why I cannot breathe your scents and subsist in the lifestyle you value and have grown attached to. I cannot live in your chemical soup.

I am a canary. I have MCS. Although canaries have saved many from disasters, their deaths are never celebrated. I feel like I will soon be sacrificed so that many will continue to breathe good quality air.

I would like to give a voice to those canaries. I’d like to call upon every canary on this planet to stand up and be counted. I want every canary not to die in vain. Continue reading

Accessible Meetings Guide Addresses Chemical and Electrical Sensitivities

Another great resource shared by Mary Lamielle, this time on how to make events accessible for people with MCS/ES.

Accessible Meetings Guide Addresses Chemical and Electrical Sensitivities

accessible events

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When They Poisoned the Pests, I Didn’t Care

waves 1c

 

 

 

 

When they poisoned the pests,

I didn’t care, because I wasn’t a pest…

When they poisoned the frogs,

I didn’t care, because I was not a frog…

When they poisoned the birds,

I didn’t care, because I wasn’t a bird…

When they poisoned the air,

I didn’t care, because it was on the other side of the planet…

When they poisoned the ocean,

I didn’t care, because I wasn’t a fish…

When they poisoned the lands,

I didn’t care, because it wasn’t near my land…

When they poisoned the people,

I didn’t care, because it wasn’t anyone in my family…

(besides, those people with MCS/ES were acting all crazy, wanting me to change my laundry products, stop using fragrances, and get rid of my wi-fi, among other things)

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I Love Pollution

 Said No-one Ever

said no one ever 3.

Although, come to think of it, maybe someone HAS said they love pollution!

Those who profit while creating it are no-doubt not complaining about pollution, and some of  those who sell us things like inhalers and  drugs are actually loving pollution’s effects on their bank balances:

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Optional “Inconvenience”

Guest post and images by Laura J Mac

What always strikes me during conversations about how to persuade service providers to accommodate our disability is how much extra work we have to do just to participate in simple survival stuff. I mean, “simply” tracking down professionals who are willing to accommodate is a chore and a half. The luxury of “having a good relationship” with a service provider falls way down on the list because it’s usually one or the other.

Laura J Mac 1

Nobody would think twice about someone who uses a mobility device asking if there are ramps and elevators but it seems that our need for fragrance-free and reduced chemical exposure is perceived as a “preference” rather than a medical necessity. That perception leads to the idea that accommodation of our disability is an “option” (and generally it’s an “option” that service providers aren’t willing to make available.) It’s not that we don’t “like” fragrance, these chemical exposures cause neurological and physiological problems that interfere with our ability to function on a daily basis.

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