Tag Archives: barriers

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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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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Are the Wrong People in Solitary Confinement?

Who should be isolated?

The poisoned or the poisoners?

When we develop MCS/ES, we are told to avoid the triggers that disable us. Yet, far too often, fragrance chemicals are the biggest triggers of disabling effects, yet they are in everything, and everywhere now.

To follow doctors orders, and to have some quality of life (like the ability to look after ourselves), when others at work or elsewhere won’t stop using toxic products,  we have to stay isolated in our homes (if we’ve found a safe one).  It’s just like being in prison… but for crimes we did not commit.

WE who are immediately disabled by these harmful pollutants are being forced into prisons of isolation for crimes the chemical and fragrance industry are committing, like when they hide  oil and gas industry toxic waste chemicals into everyday products and materials, without listing them on labels, they are causing a public health crisis, a crisis that  most people are unaware of.

WE who become disabled are being imprisoned for their crimes of saturating people (and our air and water) with toxic chemicals, and so, if we are to be able to see our friends and loved ones, we need to be protected from them, in environments kind of like this:

 

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V’s Canary Cries

Guest Post by V from the USA

This was originally posted to an online support group. V granted her permission to share it here. She has been able to put this part of her life story into words that so many of us find hard to express, and I thank her deeply for sharing her words with you too.

 

Canary V

It’s about 1:30 a.m. and this is about the time where I start to feel despair about everything in my life. I just can’t seem to adapt to the isolation and lack of a routine or purpose. Also, I can’t seem to find any pain meds for my chronic pain. I have been in physical pain for so long.

I know this post may seem disjointed which is apropos considering how I feel.

I AM so tired of spinning my wheels…Along with MCS I have so many other medical issues…non terminal that I know of but still…I have asthma and allergies.. I can’t be around dogs or cats, the weather determines my breathing status for the day and my physical mobility.

I can only eat about 10 things and it’s exhausting to try to rotate these foods and I spend excessive time trying to plan. Even planning a rotation I still get itching throat and sometimes a swollen throat with some of the ten things I think I can eat…it’s horrible to start eating and not know how I will feel ..

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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