You Smell So Good It's Killing Me
Sunday, November 16, 2008

I live with someone who has MCS -- Multiple Chemical Sensitivities (also referred to as "Chemically Injured" or "Environmental Injury").

Strap in once more, because this may be a long post. I'm going to attempt to communicate some facts that may be of interest to you -- but first, I'm going to tell you why I'm writing this, and what it means to live with MCS. I'm going to tell you my story, but I'm also going to tell you what my story may mean for you.

My Beloved has always been sensitive to certain chemicals -- but in the past three years, that sensitivity increased.

Three years ago, exposure to certain chemicals would mean she experienced an accelerated heartbeat, skin flush, mental confusion, and an adrenal response that was like "fight or flight/I've-got-to-get-out-of-here!"

Then, as her sensitivity increased, it would mean having that suite of symptoms, followed by symptoms that were like a hangover (fatigue, body aches, general malaise, etc.) for a few hours or a day.

Then it became a few days.

Then, the effects of exposure would mean several days of headache, extreme fatigue, digestive complaints, and all-round OMG I FEEL CRAPPY.

Her exposure to things like paint fumes, pesticides, cleaning chemicals, and other known toxins was fairly easy to handle -- we were already pretty "green" in terms of our household products, because that fit with our general values of sustainability and environmental awareness -- but there is a particularly difficult scenario that has been much more challenging to control -- exposure to synthetic fragrances.

As we changed our lifestyle to rid our home of the stuff that makes her sick (which meant looking carefully at shampoo, soaps, lotions, laundry and cleaning products, toilet paper, and yes, even the books we purchased used on Amazon -- some sellers will package a book that's been in a smoker's home with a scented dryer sheet to mask the smell of smoke), I learned a lot -- about chemicals, and about myself.

I'm not as sensitive to chemicals as is my Beloved. I tend to have that sort of physical unit that processes toxins fairly quickly, and even if I don't like a particular fragrance or smell, it doesn't usually give me any physical symptoms. Or so I thought.

As our home got de-toxed, and our air got clearer, I found that I actually did get physical reactions to certain chemicals. They weren't as severe as hers, but they were there -- I just hadn't noticed them because they were subtle and so omnipresent.

Now, if I sit in a room with someone who is drenched in perfume for an hour or more, I'll actually notice the results afterwards -- a slight headache, reddened eyes, sinus congestion, and marginal fatigue.

The same exposure for my Beloved would result in much more extreme levels of the same, and for her, they can last from one to three days.

Recently, she's found some things that have helped reduce her symptoms and reactions, but still, when she ventures out into the world, she always carries a small mask in her pocket, just in case.

When the doorbell rings, I'm the one who answers, because even our UPS guys and gals seem to be obsessed with making sure I know that they are Teh Sexy with their mad scentz. I usually step out quickly and close the door behind me, so that a chemical that could make my love sick doesn't waft in through the door. And waft it does.

Getting on a airplane for a two-or-three hour flight would be a complete gamble at this point. We haven't traveled by plane for over two years.

We've asked our friends not to visit the house wearing fragranced products. They have tried to comply, but still, if they used fragranced laundry products like dryer sheets or fabric softener in the past (which are not only designed to have a "lasting scent", but often contain waxes that get inside your washer dryer so that the fragrance continues on for months after you stop using them), their clothes can have lingering fragrance that can make her sick.

Depending on how full her "toxin bucket" is on any given day, she may or may not be able to sit across the room from them for a chat, and she rarely gives hugs to them anymore, if there's a whiff of chemical fragrance. She seems to do fine with all-natural essential oils -- no synthetics (but please note: this is not true of all people with MCS).

Her primary response seems to be from synthetic fragrances -- and synthetic fragrances are in stuff you would never imagine. Many people who have MCS have much worse reactions than my Beloved does.

We've posted signs and sent emails to people who attend our circles and classes, asking them not to wear fragrance to our events. Sometimes they forget. We generally allow them to stay, and my Beloved dons her breathing mask. We remind them. Sometimes they forget again. We remind them again.

Sometimes their perfume is so strong that the chairs or cushions that they sit on retain the smell for days. We've taken to covering furniture with washable throws, but sometimes we just have to drag the furniture outside and let the sun and air do its work.

Keep in mind that for someone with severe MCS, contamination of this type might mean that they have to get rid of that piece of furniture entirely.

Friday, we had someone attend our regular group meeting whose perfume was so strong that it gave me a headache, and we had the room airing out (and closed off) for an entire day -- but there's still a lingering scent.

This person has been here before, and has been asked not to come wearing fragrance. When my Beloved approached her to talk about it (these conversations are often a bit awkward), she said that she had remembered about the fragrance-free request, and had given herself a quick wash, but hadn't taken a shower. (In some cases, even showering doesn't do much good, because the person's clothing is permeated with the scent, especially if it's something they wear every day.) We didn't want to send her away, so we chose to have her stay.

However, after the group met, my Beloved and I confabbed on this and we have come to the conclusion that we just can't do that anymore. We're going to maintain better boundaries about this, and do more education, and take care of ourselves.

Here are some non-scientific observations, and then I'll get into some facts:

1) It seems like my Beloved has a "toxin-bucket" -- when she hasn't been exposed to something that triggers her symptoms for a while, she can go to the library and pass someone who is wearing perfume and her reaction will be slight.

Then something will happen like: A person wearing fragrance comes to a class -- she'll do OK -- the next day, the neighbor's dryer vent is blasting Downy all over our yard -- she'll do slightly OK -- the next day, the wind shifts and the paper-mill steam blows over our way -- she'll do less OK -- that afternoon, the sewer pipe backs up and three City guys (all Ax Body Sprayed to the -enth degree) and one plumber (Calvin-Klein-ified) have to be in our house to fix the sewer.

Then, her toxin-bucket gets full, and she has to lay down for a good long while.

At this point, answering the doorbell if I'm not home is a crap-shoot. Going into the yard to get some fresh air (which usually is helpful for her when her symptoms are active) is sometimes impossible, because it could mean a snoot-full of neurotoxins in the form of a breezy, fresh new scent. Being called for jury duty could mean sitting with a breathing mask on for days at a time.

2. The nose is a peculiar beast. Think of how it is when you come home from a long time away, and smell the smell of your own home. Usually, you can't smell this, unless you've been away. You can smell other people's houses the minute you walk in, but once you've been there a while, you don't notice that smell.

We become desensitized to smells over a fairly quick period, so if we wear perfume or scented products over a period of time, we usually can't smell them. I think that this accounts for the times when I pass someone on the street and their perfume just about knocks me over from three feet away. They can't smell their own perfume anymore. So they put on more perfume.

An old friend who was a grade-school science teacher was fond of telling her students: "If you can smell it, it's in your nose."

She would usually tie this saying to something like the smell of dog-poo, just to evoke the "Ewww! Gross!" response from her students, but her point was that the mechanism of smelling was a chemical process whereby chemicals from the object we smelled actually entered the incredibly permeable surfaces of our noses -- that it had to go into us in order to be registered as an odor.

That entry into our body doesn't stop at our noses, though -- it continues into our mouths, and our lungs -- all organs that are fabulously designed to absorb and assimilate chemicals from the outside world.

So, when you're wearing perfume or smelling your Bounced clothing, you're actually ingesting it, too -- and so is everyone else in the room. Fragrance is designed to invade other people's space -- manufacturers actually put chemicals in it to help it disseminate further and faster, and to last longer.

3. We are permeable beings. It's not just what we breath in through our mouths and noses that gets into our bodies -- our skin and eyes are permeable for a reason.

Years ago, when I was sealing a very small, high-ceilinged closet with a shellac-based (alcohol) product, I wore my very expensive respirator the entire time I was working. I had to close the closet door to access all the surfaces, and the high ceiling concentrated the fumes intensely.

I had done what I needed to protect myself -- or so I thought -- but at the end of the day, I could detect the distinct flavor/smell of ketones on my breath -- you're probably familiar with it, even if you don't know the word --it's that particular smell on the breath of someone who has had way to much to drink.

I asked my MD about it, and he pointed out that we very efficiently absorb chemicals through our skin, but most especially through our eyes. Our entire body is "breathing".

So, chemicals that we douse our clothing in (and then wear next to our skins) will get into us, even if we can't smell them.

Now, some facts:

A) Fragrance: You don't know what's in there.

Anytime you see the word "fragrance" on a product, it contains an unknown amount and combination of chemicals that are not required to be individually listed as ingredients.

These combinations of chemicals are considered a "trade secret" for fragrance manufacturers. The FDA has only banned about 10 chemicals from use in perfumes and cosmetics. Legally, any other chemical can be used in a fragrance, and those chemicals do not have to be revealed to the consumer in the ingredient list -- the word "Fragrance" is enough, even though that may be dozens, or hundreds, of chemicals.

The fragrance industry is essentially, self-regulating. (And looking at the current state of the world economy, we all know how well that self-regulation thing works.)

B) Fragrance: What's in there might not be very good for you.

"The fragrance industry does come under the regulation of the FDA, but the regulation is extremely limited. Many of the ingredients used in fragrances have little to no safety testing done on them. Most of the safety testing that has been done has revolved around the dermatological effects of fragrance chemicals. The effects on the respiratory system, the brain, and other organs of the body have not been determined on individual chemicals - much less in the combinations in which they are used." ~ http://www.ourlittleplace.com/fda.html

"95% of chemicals used in fragrances are synthetic compounds derived from petroleum. They include benzene derivatives, aldehydes and many other known toxics and sensitizers - capable of causing cancer, birth defects, central nervous system disorders and allergic reactions." ~ 'Neurotoxins: At Home and the Workplace', Report by the Committee on Science & Technology, U.S. House of Representatives, Sept. 16, 1986. (Report 99-827)

Oh, in that 1986 Report from Congress, Fragrances were listed among the six categories of chemicals that should be given high priority to be tested for neurotoxicity -- along with insecticides, heavy metals, solvents, food additives and certain air pollutants. (Neurotoxins are chemicals that damage or destroy nerve tissues.)

So, you don't really get to know what's in your nose, and they don't have to tell you.

The only way you would be able to find out is to take it to a chemist and have it analyzed -- and honestly -- if what was in there was actually good for you, don't you think the manufacturers would be touting that as a selling point? -- "Between Love and a Stronger Immune System Lies . . . . . Obsession."

C) Fragrance: It's Not Just Your Cologne

Perfume and cologne, scented lotions, and soaps and shampoos that you apply to your body is only one of the problems with synthetic fragrance.

Dryer sheets, fabric softener, and detergents can contain fragrance -- even if they're marked "unscented" or even "fragrance-free" -- because if a fragrance is used as a "masker" (something to mask the smell of another chemical, but not intended to impart a "scent") -- it doesn't even have to be listed using that one word: Fragrance.

You can be, literally, "cleaning" your clothes in a chemical bath that isn't "clean" at all.

"Trouble is, you have no way of knowing it. Manufacturers of detergents, laundry sheets and air fresheners aren't required to list all of their ingredients on their labels -- or anywhere else. Laws protecting people from indoor air pollution from consumer products are limited.

When UW engineering professor Anne Steinemann analyzed of some of these popular items, she found 100 different volatile organic compounds measuring 300 parts per billion or more -- some of which can be cancerous or cause harm to respiratory, reproductive, neurological and other organ systems.

Some of the chemicals are categorized as hazardous or toxic by federal regulatory agencies. But the labels tell a different story, naming only innocuous-sounding "perfume" or "biodegradable" contents. ~http://seattlepi.nwsource.com/local/371779_toxicfragrance23.html

D) Fragrance: Your Favorite Fragrance Has Gone Global

It isn't just going onto, and into, you.

It's going down the drain to the water table, and into the sea, so fish are swimming in it and breathing it, and you get to drink it later, and eat it at Chez Fins.

It's blowing out of your dryer vent, so insects and birds are flying through and breathing it.

It's being dumped into landfills. (The EPA cites discarded or waste consumer cosmetics as one of the leading contributors to PCPPs in the environment.)

So fragrance is a gift that will keep on giving (toxins) for generations to come, and to other species who really don't care whether you smell like a Spring Day (but who might care that they get to live to see another Spring day).

Of course, fragrance isn't the only culprit in MCS (many people are triggered by things like new plastic products that are off-gassing -- carpeting, etc.), and the toxicity of our buildings has increased as more and more synthetics are used.

But even if we're just talking about fragrances, and we really do have a "toxin bucket" that can "get full", and once we get full, we get sick, then what does it mean that we are bathing in, slathering our skins with, inhaling, and washing our clothes in stuff that we have a hunch might not be so good for us?

". . . . . .health effects from exposures are often difficult to detect. While some effects are immediate and noticeable, others are gradual, subtle, and sub-clinical. Of particular concern are chronic and often low-level exposures to mixtures of chemicals, which are the type of exposures that typify daily life.

Human exposure studies, over the past two decades, have revealed widespread U.S. population exposure to VOCs (Wallace et al., 1991b;Wallace, 2001). Paradoxically, the largest contributors of VOCs to human exposure (nearly 90%) are not the sources traditionally recognized and regulated, but rather sources that are small, close to us, largely unregulated, yet often within our control (Wallace, 2001; Wallace et al., 1987), such as consumer products and other indoor sources. In particular, fragrance compounds, used in a wide variety of consumer products, can be primary sources of human exposure to VOCs (EPA, 1989; Sack et al., 1992; Wallace et al., 1991a; Cooper et al., 1992, 1995)."

Source: Steinemann AC, Fragranced consumer products and undisclosed ingredients, Environ Impact Asses Rev (2008), doi:10.1016/j.eiar.2008.05.002

Two recent situations I've been in that I find ironic:

I live in a state where you cannot smoke, even outside, within 25 feet of any doorway, air vent, window, or opening to a public space (even privately owned businesses), yet my Beloved cannot risk going to the City Building to pay the water bill without wearing a filter-mask, because the clerk might be wearing perfume, or have a Downy addiction.

My Beloved went to the public library to pick up the book she had put on hold (How everyday products make people sick : toxins at home and in the workplace / Paul D. Blanc), but she couldn't bring it home and read it because it reeked of perfume.

So, there is my story, and some facts.

Now, here's what you can do:

What You Can Do For Yourself and Your Family:

• Get that stuff out of your home, off your skin, and out of your clothes (and off of your loved ones' skin and clothes.)
• There is a great round-up here about becoming fragrance-free.
  
• Check the labels on your body and hair-care products -- but first, get educated about tricky words like "unscented", "natural", and "perfume free". If it says "fragrance", it has chemicals in it that you have no idea about. Even some "fragrance free" products can be dicey, because of the masking chemicals, which do not have to be listed as fragrance. Most products sold at Natural Food stores that are listed as Fragrance Free are reliable -- but I prefer items that have an entire list of ingredients, and say so. You may be able to find out more about your existing products at Skin Deep, which has a database of safe and unsafe cosmetics. (You can also research individual ingredients there, because even fragrance-free products can contain other chemicals you don't want on you or in you.)
  
• Start using products that are environmentally safe and safe for you. Here's a great start: http://www.peggymunson.com/mcs/products.html
• Get educated -- all of the links in this post lead to real information, much of it peer-reviewed scientific study and official reports, the rest from people who deal with MCS.
  

Here's what's currently in use at my house:

• Seventh Generation Free & Clear Laundry and Household cleaning products
• Bon-Ami
• Citra-Solv
• White Vinegar (cleans windows, surfaces, and absorbs fragrances in rooms)
  
• Baking Soda (mix it with vinegar to clear drains, absorbs smells -- you can even wash your hair with it -- and yes, it does work -- my Beloved has been using it, and her hair looks, and feels, great.)
  
• Shampoos and Hair Care Products vary, but I like Aubrey Organics (also, there are very inexpensive and effective ways to go fragrance-free that don't involve buying expensive fragrance-free products -- check the links above).
• We usually purchase locally-handmade soaps, but we always have Dr. Bronner's on hand (sometimes, literally on hand).

What You Can Do For Your Chemically Sensitive Friends:

• Get educated. There's a wealth of information out there. You might want to start with Peggy Munson, and MCS.org.
• Ask them what their sensitivities are. Take them seriously. This is real. It's not in their heads, and if you choose to use fragrance and then hang around them, they can end up feeling lousy for hours, days, weeks, or months.
  
• Don't be offended if they're hesitant to hug you, or invite you to their house, or when they say that they can't accompany you to a certain restaurant or concert or bar. It isn't you -- it's your chemicals.
  
• Remember that when you choose to wear fragrance around your friend, even if you know it will trigger reactions in them, it's kind of like blowing cigarette smoke in the face of someone with emphysema -- your choice is trumping their health.
• Remember that some people are triggered by off-gassing from new plastic items, so consider this when choosing gifts and packaging.
• Speak up for them when other people scoff at their needs. Help people get educated.
  

Giving up fragranced products has been difficult for some people I know.

There seems to be a tendency to think that the person with the MCS is the one with the problem, rather than a willingness to look at the fact that maybe the level of toxicity we live in and around is the problem.

Last week, a student came to class wearing perfume. She is a nutritionist, and when my Beloved had a conversation with her about fragrance, the student cheerfully informed Beloved that she had been helping people with MCS improve through dietary changes -- maybe she could help Beloved, too! My Beloved thanked her, told her that she is working with *therapies that were helping her, and then said:

"You know, even if I'm not having reactions to the chemicals, I still don't want to live around that stuff." The young woman looked honestly baffled at this.

But you see -- I don't actually think of MCS as a "disease" (the "canary in the coal mine" comes to mind) -- instead, I think that, as we increasingly surround ourselves with more and more and more low-level toxins, all of us may be"getting our buckets filled" -- and that those whose MCS reactions are more extreme may be our early-warning signal, giving us a glimpse of what's to come if we don't clean up our act.

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*I've asked my Beloved to write a post at her own blog about the things that she's doing that are helping her deal with her reactions to chemicals. It's not ready yet, but when it is, I'll update this post with a link.

Posted byPortlyDyke at 9:20 PM 22 comments  

Labels: Environmental, MCS, True Stories