Category Archives: Support

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!

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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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We Know (Some of You) Try

 

Guest post poetry by Sandy Lippert

You probably think you are all fragrance free,

But it doesn’t wash away so easily.

I’m certain of all your efforts and know how hard you try,

But when you come to visit, I’m just getting by.

I probably look just fine to you Continue reading

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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Have Your Say for May by Mimi

Mimi from Ontario, Canada has this to say to us:

I wish that you could accept that this is real and that your habits make me ill.

I wish you could understand how switching to fragrance-free products is such a small act that means a world of difference to me – literally.

It means being able to have a clear mind in order to work effectively and support myself, it means being able to receive hugs, it means not suffering every day.

Mimi

Have Your Say For May

What if you had the chance to say one thing about your life with MCS/ES, and how it would change your life if it was understood?

May is MCS/ES Awareness Month (yet again… maybe some year we won’t need it to be, but this year, we still do), and this year, I would like to share some of your stories and insights.

this one thing

If you could tell the world ONE thing about your life with MCS/ES (or any other invisible disability that has MCS/ES as a symptom), what would it be?

How has this one thing affected your life?

If this one thing were changed, how would your life be different?

You could think of it as a conversation with someone you love, someone who loves you (or even a kind stranger), someone who wants to understand, and who is willing to do something for you, and/or to change the way they do things, in order to include you in life, and to help you with what you need or want to accomplish in life (for example).

This is your time to tell them this one thing, and how this change will impact your life for the better.

Here’s what I am asking for with your submissions: Continue reading

It’s What You Can’t See that Hurts You

What it can be like having a friend with MCS… from a real friend <3
“I would go through all those steps, put on my safe clothes and Colleen would still say “Nope. Still contaminated.” I wanted to punch something. Here I would do just about anything for a friend, and it still didn’t work. It didn’t dampen her spirits, though. After that happened, she would just smile and say how I had worked harder than anyone else to solve this problem, and it was too bad that it hadn’t worked. That really didn’t help me much. I still felt frustrated.”

Joe's avatarStepping Out with an Agoraphobic

Invisible Illness

This week is National Invisible Chronic Illness Awareness Week. It runs through September 14th. It was suggested to me that I write about my experiences in dealing with my illnesses, and I will – perhaps at a later date. Instead of looking within myself, I thought I would broaden the scope of my focus and talk about an invisible illness that has hit close to home, and changed how I live my life.

To have a loved one succumb to an illness is one of the most painful things imaginable – and that pain applies to friends, as well as to family. What is even worse is when that illness is new, uncommon, or even invisible. This is what has been happening to my friend, Colleen, who has Multiple Chemical Sensitivities, a crippling disease that has rendered her disabled.

I must admit that sometimes I don’t feel like…

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The Fragrance-Free Soapy Water-Bucket Challenge!

I challenge everyone who uses any products that have fragrance or parfum listed as an ingredient  to pour a bucket of fragrance free, non-toxic soapy water over your head, to draw attention to the fact that fragrance chemicals and ingredients in everyday personal care, laundry products, and cleaning products are making people sick and disabling them, and that fragrance-free, non-toxic products are healthier for everyone.

This looks like a it was bucket full of fragrance-free soapy water!

This looks like a it was bucket full of fragrance-free soapy water!

Please donate to these two organizations that are helping people who have been injured by fragrance (and other chemicals) find medically required, safe, non-toxic housing:

ECOASIS

http://www.aseq-ehaq-en.ca/ecoasis.html

re|shelter

https://reshelter.org/grant-programs/

 

Thank you for participating!

P.S. You can use WARM WATER!