Category Archives: Community

Sharing My Truth

Jacqueline originally shared her public speaking experience at a noncompetitive StorySlam with the theme ‘Misunderstood’ in a fb group, and very graciously accepted my invitation to share her story here with you.

 

Guest Post by Jacqueline Rice

Photo of me sharing my truth @ Ex Fabula (from stories), the MKE storytelling organization.   Photo from Ex Fabula

 

Here’s the excerpt from the blog entry from their website:

Invisible Stories

“Not all stories have a resolve, but instead bring a call to action. Like Teller Jacqueline, who shared her invisible disability with the crowd. Due to carbon monoxide poisoning Jacqueline was forced to alter her lifestyle in dramatic ways. Her exposure to carbon monoxide caused her to be intolerant to chemicals such as perfumes and sprays. Because of this, Jacqueline can’t be in many public spaces. Thank you, Jacqueline, for using your voice and story to advocate for many others with invisible disabilities.”

How it felt for me at the mic in front of 200+ people: Continue reading

Choices… We Always Have Some

When Toxics Drift

we end up with choices.

Sit outside for a little while to get some Vitamin D

or

Be able to think, wash dishes, and/or make something to eat

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Ontario’s Task Force Releases its Phase 1 Recommendations to help people suffering from chemical sensitivity but health ministry abdicates again. Here’s a new take on that report.

An important update on the situation in Ontario, from Varda Burstyn, one of the original members of the Task Force on Environmental Health.

Please read and share, and find a way to put pressure on the elected reps, and if possible, get much needed media attention on this travesty of justice!

Note too that it’s not just for us, it’s a public health issue when over 50% of children have chronic health problems (including preschool kids with disabling anxiety), and something like 2/3 of the population on at least one pharmaceutical drug. We know that removing the cause of the problem results in better health than ineffectively trying to manage some symptoms!

When the canaries are ignored, public health suffers!

Dispatches from The Chemical Edge

Hundreds of thousands are sick – and after 33 years, Ontario government again declines to implement basic measures of care

 Extracted pages from task_force_on_environmental_health_report

“These three environmental health conditions typically have a devastating impact on the individuals affected. Unfortunately, our health care system too often has not helped them to the extent they need. The report of the Task Force sets out a course that will begin to remedy this. I look forward to seeing the Minister’s response to our report, and urge him to respond quickly and decisively. There is a need for strong leadership.“ Neil Stuart, Vice-Chair of the Task Force.

Few people have any idea of the number of people in Ontario afflicted with the debilitating, painful, often co-occurring and even life-threatening conditions of Environmental Sensitivity/Multiple Chemical Sensitivities (about 310,000), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (about 215,000) and Fibromyalgia (about 196,800). But it turns out that, in total, there are a…

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Acts of Festive Kindness

Christmas, Birthdays, and Other Holidays with MCS/ES

For most people, these special occasions are times of joy and celebration in the company of friends and loved ones, but for people with invisible disabilities and chronic illnesses like MCS/ES, they can be sad reminders of the lives that we no longer have  access to.

We are still seldom  included in the festivities and are usually left alone to fend for ourselves. Unfortunately, since human beings are social beings, not everyone is well equipped to self occupy, and  some people become seriously depressed and even suicidal because of this.

To realize it’s because some friends, family, neighbours, and co-workers prefer to keep using certain products instead of using other products so we can safely be around them and enjoy their company,  makes it even harder for us, knowing they care more about the products they buy than they care about us. It’s a heart breaking thing to have to live with.

 

  Thankfully, not everyone chooses products over people 

 

Before I became too chemically injured to socialize in crowds, I had a wonderful friend who happily made the effort to make her place and parties safe for me!

In 2005  her invites were all sent out with these words:

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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 Four)

Part Four of Four

(Part One, Part Two, Part Three)

Guest post by Che Ray

 

If you are hosting the family in your own home, it is true, you must take every precaution.  Otherwise their stink will be there long after they leave.  If they come in with stuff and it gets on your furniture, it will be bad.

Here is a suggestion: let them know in advance that before they enter the house they will have to be willing to have you test whether they are wearing anything that is triggering for you. Then when they arrive, if you have a good friend who gets what you are dealing with, have them first go to the cars of the people who are coming. He or she can do a preliminary test. If she senses something she can be the one to tell them what the problem is.

If you have sent them detailed emails in advance of everything they need to eliminate (she can even bring the check list to the car) then this will come as no surprise. They won’t be mad at you, they will feel bad. And that’s OK. That is the part of the learning process on their end.

If they make it to the front porch, you go outside and test again.  When you first greet them, I suggest having your mask on.  It will let them know right away what the situation is.  Take it off briefly to assess the situation.  If you feel comfortable taking it off at some point later in the evening, you can simply say, I am going to do a test to see how I do.

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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 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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