Tag Archives: mental health

The Power of This Pause

Guest post by Judy Freed

The Power of This Pause

For just a moment, there is a pause.

A pause from the years of well-intended, ill-informed inquiries:

“So, what have you been up to lately?  What do you do for fun? See any good movies?  Go anywhere exciting? Get together with any friends?”

For this moment, nobody is asking me these questions.  Instead, there is an awareness that “normal” day to day life has been interrupted.  The questions now are almost always something like: “How are you doing?”  “How are you holding up?” “Are you ok?”

Finally – questions that make sense to me; questions I can answer without Continue reading

11 Reasons To Stop Using Fragrances and Implement Fragrance-free Policies

Here are 11 excellent  reasons to stop using and allowing fragrances in your home, at work,  in healthcare, in housing, at school, in transportation, in retail, and in other public places:

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Province of Ontario Interim Report on ME/CFS, FM, and MCS/ES

The Province of Ontario’s Ministry of Health and Long Term Care’s long awaited Environmental Health Task Force Interim Report has finally been released!

“We found that, throughout the health care system and in society at large, there is:

•a lack of recognition of the seriousness and severity of these conditions
•a profound shortage of knowledgeable care providers
•a dearth of clinical tools to support and guide care
•a discouraging shortage of services and supports for people living with these conditions
•an absence of support for family caregivers.

The lack of knowledge and appropriate accessible care has devastating effects on Ontarians struggling with ME/CFS, FM and ES/MCS.

For those living with ME/CFS, FM and ES/MCS, the lack of recognition of these serious and debilitating conditions is as harmful as the lack of treatments. …

We urge the Minister to act now to raise awareness of these conditions and address the barriers that keep people with ME/CFS, FM and ES/MCS from getting the care and services they need.”

From the press release:

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Understanding Environmental Health

Dr Stephen Genuis is someone who has an excellent understanding about  environmental and public health.

He  now has a new website and has also started an easy to understand  video series on environmental health, where he  discusses causes, effects, and what can be done to help the growing numbers of us who experience environmentally linked chronic health challenges.

By “those of us” I (and he) mean many more people than conventional medicine considers to be environmentally affected, and he gives excellent examples of this  in the videos (as well as in his research papers).

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Videos: What’s Making us Sick? The Chemical Erosion of Public Health

If you prefer getting your research information by watching and listening  instead of reading, here are a couple of video presentations by the esteemed Dr Stephen J. Genuis, who is one of the leading experts on  environmental health.

In these presentations he discusses the increases in chronic illness and mental health problems, chemical and other causes and effects,  shortcomings in our health care systems, as well as some treatment options to improve health.

I’ve also linked to related research for those of you who like to read.

videos 4 Genuis

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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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Down is Harder After Up

Alternate title: Be Grateful or Be Miserable!

I had some really good brain and body days in the early spring, enough that they left an imprint on me of how it felt to feel (relatively, and almost) normal. instead of the usual:

feels like quicksand-3

Then shit happened… (sorry, I don’t usually use language like that, but I’ve lost access to some parts of my vocabulary lately as a result of the toxic stuff I was exposed to).

Pesticides, dental infections and extractions, toxic products and materials (including trying to replace a SS kitchen kettle -simple, yes? Actually, NO), summer road work, more and more pesticides, heat,  VOCs, lack of ventilation and air filtration, which meant no ability to cook, and more…all of which resulted in some serious brain fog, cognitive problems,  and drastically reduced physical abilities.

Back to the drawing board…

After having some good days this year, I crashed again, and I haven’t been able to recover… much… There can be a few better mini-moments here and there if the outdoor air quality is exceptional and the breezes have been blowing the “right” way, but nothing like how well I was doing for a while in the spring.

Which makes it so much harder now, because I can actually remember what it was like to be more functional. It was so long ago before, that it didn’t really come into play or into my thoughts, as for so many years, I couldn’t remember what it was like to think clearly, or to function without effort, with relative ease.

Is it really too much to ask to be able to function with relative ease? To not have every thought, every action be like climbing a mountain or navigating an obstacle course?

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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

Industry Approved Actions to Spare Your Air, Lungs, and Brain

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If only the air was this good all the time!

If only the air was in the blue range all the time!

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Sometimes summer air just plain sucks. It can and does cause all kinds of health problems. Here then are some tips from Air Quality Ontario on what we humans can do to reduce our exposure to harmful pollutants and our impact on outdoor air.
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Note that none of these suggestions are enforceable. They are entirely voluntary for those of us who manage to learn of their existence. Many of us only find out about these tips once we are so adversely affected by pollutants that we couldn’t do these things even if we wanted to, which means the tips are most useful for the people who aren’t personally affected enough (yet) to understand the need for them.
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(reducing industry impacts on air will just have to wait until enough of us demand it)
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During a Special Air Quality Statement, there are a number of actions that you can take to help spare the air:

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Optional “Inconvenience”

Guest post and images by Laura J Mac

What always strikes me during conversations about how to persuade service providers to accommodate our disability is how much extra work we have to do just to participate in simple survival stuff. I mean, “simply” tracking down professionals who are willing to accommodate is a chore and a half. The luxury of “having a good relationship” with a service provider falls way down on the list because it’s usually one or the other.

Laura J Mac 1

Nobody would think twice about someone who uses a mobility device asking if there are ramps and elevators but it seems that our need for fragrance-free and reduced chemical exposure is perceived as a “preference” rather than a medical necessity. That perception leads to the idea that accommodation of our disability is an “option” (and generally it’s an “option” that service providers aren’t willing to make available.) It’s not that we don’t “like” fragrance, these chemical exposures cause neurological and physiological problems that interfere with our ability to function on a daily basis.

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