Category Archives: Support

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:

Continue reading

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.

Continue reading

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.

Continue reading

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.

Continue reading

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:

Continue reading

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!

Continue reading

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.

Continue reading