Category Archives: Support

How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Three)

Part Three of Four

(Part One and Part Two)

Guest post by Che Ray

 

Here are some things I would recommend: even when it’s a stuck in bed day…

I: Don’t try to do too much physically. Definitely let your body rest, but also do something active to restore your mind like listen to a meditation talk or guided meditation. Tarabrach.com or jonathanfoust.com are great!  I recommend them highly.  This will help you get restorative rest, which is a much deeper, more relaxing experience.

II: I only recently discovered an online language tutorial called Mango. It’s free if you have a public library card. It is an awesome interactive language learning app. It has everything from Spanish to Swahili, to Pirate (really, it’s super fun and funny!) to Yiddish; dozens of languages.

I have a brain injury from the toxic exposures but have not been able to get the kind of occupational therapy I need which has been depressing. One day I thought, what can I do to keep my mind stimulated?  And I came across this. Even if you don’t want to dedicate yourself to learning a new language, 10 minutes of mimicking Pirate language is going to make you laugh and feel better. And it’s good for your brain.

 

III.  You are a superhero.

Recruit other people in your life to join your fight.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Two)

Part Two of Four

(link to Part One)

Guest post by Che Ray

 

Overarching rule of thumb:

Talk about MCS/EI/TE/TILT like you are talking about cigarette smoking or HIV exposure.  What I mean by this is:

A: It is a given fact that second hand cigarette smoking causes disease.

We didn’t know this for a long time because the tobacco industry didn’t want us to know. So people had to put up with cigarette smoke in their face. Now it is not only not tolerated, it’s illegal to smoke in many places.

Explain to people that the elements in cigarettes that really kill people are often the exact same chemicals used in fragranced products.

I also say this condition is like smoking and HIV in that these diseases, more than others, DEPEND on other people caring about the health of people (like us) as much as they care about themselves.

 

B:  We have NOTHING to apologize for, so DON’T DO IT.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot

Part One of Four

Guest post by Che Ray


For those of us with EI (environmental illnesses), the holidays are especially brutal.  What were once happy times surrounded by family and friends become increasingly isolating experiences.  Depending on how bad off we are with things like fragrance sensitivity (which, next to fruit cake is the worst part about inviting Aunt Betty) or severe fatigue (where you just want to curl up into a ball under the dinner table), more and more we are faced with having to choose between trying to brave a family gathering only to end up sick in bed for weeks or convincing ourselves we will just stay home and write that novel.

In response to a heart-felt plea for help from one newly aware Canary who was torn between wanting to accommodate her family and fear of going overboard and getting sick, I wanted to reach out to her and give her some advice I wish someone had told me.  This is more or less what I said:

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Profile Pictures for Awareness Month

These images are available on facebook. Feel free to download the appropriate one and use for Awareness Month, or at least for May 12th Awareness Day!

Profile pics for MCS/ES Awareness Month Support – Choose from the #MCSchallenge profile pic or do the #MaskChallenge OR do both!

Posted by Seriously "Sensitive" to Pollution on Tuesday, May 2, 2017

 

Please join us in letting the world know we exist!
We have important wisdom to share with everyone!

 “Delegitimizing those with ES-MCS, who may be warning us all of the need for toxics reduction, also tends to impede development of practical, precautionary, potentially preventive and cost-saving public health strategies.”

http://www.womenscollegehospital.ca/assets/legacy/wch/pdfs/ESMCSStatusReportJune22011.pdf

When a Friend’s Life Is Being Threatened

Guest Post

A few of us in the MCS community have been burning the proverbial candle at both ends and in the middle, trying to generate public awareness and interest to persuade the NS housing authority to reconsider their 3 year battle to evict our good friend Wendy, despite no accessible alternatives being available.

Their unwillingness to understand and accommodate her disability and her medical team’s recommendations… well, it’s something a lot of us have faced and are facing.

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MCS/ES and Mental Health

Living with MCS/ES creates challenges that seem unimaginable to most people. Despite some progress (more awareness), due in large part to so many more people being affected, the barriers and obstacles to living in the world as it currently is, can be never-ending when there is industry generated denial that everyday chemicals (or wireless) exposures are hurting and disabling people.

dinner time“Remember, don’t talk or breathe when you take your masks off to eat”

It is exhausting to have to constantly ask for accommodations just to be able to exist in a world where safe solutions are often hard to find, or when they do exist, they are not affordable. It can be like living in a world that wishes we’d just go away and leave them all alone, yet… there is no safe place to go away to…

Is it any wonder then, that people develop mental health problems?

When health problems (mental or otherwise) related to circumstances and experiences arise, one is (usually) only truly helped by people who have an understanding of the issues related to the circumstances that are connected to the problems. When that understanding doesn’t exist, appearances can create erroneous assumptions that perpetuate the kinds of harms that caused the problems in the first place.

For people with MCS/ES, exposures can  trigger temporary or long term brain and behavior issues that look like mental health problems to people who don’t know how toxic chemicals, molds, food sensitivities, or wireless exposures can affect our brains and bodies. And sometimes we are capable of doing some things, yet completely incapable of doing others, as exposures can affect different parts of our bodies and brains, and for varying amounts of time.

What people also don’t understand, is that when we are able to live free of those exposures, we can be free of the brain or behavior problems the exposures cause.

Finding ways to access goods and services without being subjected to disabling levels of exposures can take 10 to 100 times more effort than people normally have to extend for the same goods and services. Sometimes, despite our best efforts, we cannot safely access the goods and services everyone else takes for granted. These challenges can mean we may need to turn to others for help with survival and coping , yet not only is it difficult to receive practical support,

new research  also proves that access to knowledgeable mental health care providers is rare for people with MCS/ES!

 

“When asked to evaluate their provider’s knowledge of MCS on a scale of “not knowledgeable”, “somewhat knowledgeable”, or “highly knowledgeable”,

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Loneliness, Posttraumatic Growth, and Invisible Disabilities

Amelia Hill shared an eloquent post about enduring and working with loneliness (see below).  Amelia and I are both  housebound (and have been so for years), but she is currently confined to a much smaller space in her home than I am in mine.

loneliness - Amelia HillFrom Heal Amelia’s Life:

Loneliness. I’ve kinda learned to override the often relentless waves of loneliness one feels living an isolated existence like mine.I don’t deny the feelings of loneliness or push them down in an unhealthy way. But it’s more like a repetitive cycle of acknowledging it & letting it go, acknowledging it & letting it go. It’s how I survive.

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