MCS Awareness Month / Fragrance Sensitivity

May is national MCS (Multiple Chemical Sensitivity) month.  Briefly, MCS is defined as suffering “multi-system illnesses as a result of contact with, or proximity to, a variety of airborne agents and other substances.”

According to MCS-America, MCS affects over 48 million men, women and children of all races.  There are many substances that affect those with MCS, some of which include fragrances, cleaning products, laundry products, air fresheners and scented candles, secondhand smoke, pesticides, paints, solvents, certain foods, preservatives, beauty and personal care products, etc, etc.  Symptoms can range from mild annoyances to life-threatening reactions.

As I wrote in my previous posting about Human Canaries, I am a person who is highly sensitive to low levels of fragrances and chemicals.  They make me very sick and I could be debilitated in bed for at least a couple of days after an exposure…and an exposure could be as simple as getting a whiff of someone’s perfume or walking by an air freshener.

FRAGRANCE SENSITIVITY

The remainder of this post will focus mainly on fragrance sensitivities, which is a part of MCS.  Studies are suggesting that fragrances are becoming an increasing concern in general, and definitely for me because of its increasing prevalence.  There are more and more fragranced products that are available, and more products where the fragrance is designed to last longer (as I have seen in commercials for certain laundry products).

Health Concerns

Research has discovered a number of toxic and undisclosed chemicals in fragranced products.  Prior to the 1970s, perfumes were primarily made from natural ingredients like flowers and herbs.  However, perfume formulations have since changed.  Today, perfumes are over 90% synthetic.  These fragrances can contain up to several hundred chemicals, many of which are toxic even at low levels and can be dangerous when inhaled or applied to the skin.  Low levels can accumulate and small exposures over time can lead to health problems.  Common fragrance chemicals have been found to be toxic to the neurological, respiratory, immune, and endocrine systems.  The skin is the largest organ in the body and absorbs chemicals, which can affect other organs in the body.   Also, according to the American Academy of Dermatology (AAD), fragrances are considered a leading cause of contact dermatitis.

Fragranced Products

Fragranced products are widely used in homes, businesses, institutions, and public places.  Some that are of concern include:

• Laundry products – detergents, fabric softeners and dryer sheets
• Scented candles and air fresheners
• Personal care – soap, shampoo, hairspray, gels, lotions, sunscreen, deodorants
• Perfumes, powders, oils
• Cleaning supplies

Environmental Impact:

Fragrance chemicals enter and persist in the environment.  They have been found in the air, soil, water bodies and drinking water, and are difficult and costly to remove once they have entered the environment.

Fragrance Regulation:

The fragrance industry is mainly self-regulated.  No law in the United States requires disclosure of any ingredients in a chemical mixture called “fragrance” even if the chemicals are toxic or carcinogenic.  Depending on the type of product, the word “fragrance” may not even need to be listed.  Certain regulated products only need to list “fragrance” or a similar term, as an ingredient, but not the ingredients that make up the fragrance, even though an individual “fragrance” can contain up to several hundred chemicals.  Generally, consumer product ingredients are exempt from disclosure, some of which are protected as “trade secrets.”

Alternatives

There are many resources on the internet that include healthier and environmentally responsible alternatives.  Here are just a handful of suggestions:

• Choose products without fragrance, scent or perfume.
• Help institute or suggest a fragrance-free policy at work in consideration of those who are sensitive and become ill.
• Baking Soda – a versatile natural cleaner, scourer, odor absorber, deodorizer, and is a natural fabric softener and deodorizer when added to the wash water prior to adding clothes.
• White Vinegar – another versatile natural cleaner, grease cutter, stain remover, removes mildew, odors, and is a natural fabric softener, deodorizer and reduces static cling when added to the wash or rinse water
• Lemon – has effective antibacterial qualities and can dissolve all sorts of grime.
• Use better ventilation and consider plants that absorb and reduce odors, rather than using a potentially toxic air freshener that masks the odors but does not clean the air.
• Hydrogen peroxide – for cleaning
• Fresh coffee grounds – absorbs odors
• A natural or organic ingredient, or essential oils do not always mean it’s safe.  Some can be harmful and emit hazardous chemicals.  (Some natural plant smells alone that make me very ill are lavender, gardenia and stronger fragrant flowers.)

Remember, being “clean” does not have a smell, and changing just one thing is a positive step to a healthier environment and healthier living.

Consideration for people with sensitivities

Even for those who do not experience any reactions to chemicals, fragrances, allergens, etc., or do not notice their existence, we might consider healthier alternatives for our own sake, the environment, and for those whose lives are greatly altered and tormented by their presence.

Please be considerate and respectful of those who say they are noticing a fragrance, chemical or allergen that is making them ill, whether it is something wafting in the environment or a product being used by someone they are with.  It is a very real problem for us and leads to loneliness and involuntary (or necessary) isolation from relationships and activities that we so much want to be a part of.  Personally, my doctor said my only option is to avoid any of my irritants called fragrances and chemicals.  Health should be a top priority.  Judgmental reactions and criticisms do not help.  Some people are so debilitated from what many would consider low or unnoticeable levels that they have had to resort to near total isolation to protect their health. I believe this is the case with some of my blogging friends who have MCS.

Friends, family and others who are considerate, respectful and even stand up for us as an advocate shows us that we are important to them, and that we matter.  What an important and necessary feeling to experience!

Here is a closing thought to consider:  When you genuinely matter to someone, they will always be there for you.  No excuses. 

Pain Haiku #2

>>>::<<<
dark clouds swallow me
relentlessly tormenting
pain monsters
>>>::<<<

Several weeks have passed and the elevated, intense pain symptoms persist.  The list of places in my body without pain is shorter than the list of places experiencing pain.  This recent increase is explainable.  There have been a few unexpected setbacks, and I need to continue therapy, stretches and treatments to get me back on track.

In one of my pain psychology sessions a while back, I showed my psychologist some doodles I had created, which included some emotional situations involving…of course…pain.  One of the recommendations he had in addition to doing artwork regarding emotional situations is to draw an alternate scenario.  For example, he asked how I would draw myself if I had more “power ” and said that drawing an alternate scenario can help you figure out an alternate in real life.  So here it is…my alternate scenario:

>>>::<<<
pulverize the beasts
banish to oblivion
a bright new day
>>>::<<<

Pain is only one type of monster persisting right now.  What kinds of monsters are persisting (or have persisted in the past) for you?

Pain Haiku

>>>::<<<
pain advances
like shadows grow through the day
a new day has not dawned
>>>::<<<

Lately, there has been quite an increase in chronic pain and other symptoms.  I hope for the day when decreased pain will give me some freedom and independence.  In the meantime, I must continue treatments, therapy, stretches and mind/body exercises, including taking pain breaks with what I call my “nature, photography, and creativity meditation.”

Take a Break #2

Camera+Doodle 1, a photo by Fergiemoto on Flickr.  (click on photo to enlarge)

>>:::<<
the harder we try
the more evasive the problem
try by not trying
>>:::<<

We all need to take breaks, regardless of what we are doing.  I’ve experienced the mental blocks at work where I needed to walk away from a problem and come back to it later with a different perspective.  I’ve had the “creativity block” where I just cannot think of a haiku to write, a subject for a blog post, or an image I wanted to work on and what to do with it.  Sometimes trying to get rid of anxiety and giving it attention makes the anxiety even worse.  With chronic pain, sometimes meditation or a diversion will help temporarily reduce the pain.

There are countless examples where we need breaks. Getting an answer is part of trusting, without being critical, that putting it aside for a while will bring an answer.

I created this image above, which is a combination of a doodle and a photo of a Western Scrub Jay that visits us daily for peanuts.  This is my first attempt at what I have been calling a Camera+Doodle.  I have more in mind and it is the result of something different I wanted to do.  In fact, it was the result of “try by not trying.”

This scrub jay does come very close to us, but I noticed the harder I try to get him to come closer, the more distance he leaves between us.  If I just ignore him and go about my business, he usually comes closer.  He has yet to take food from my hand, but one of the squirrels here will gently take peanuts from me.  Also, a chickadee landed on my hand last fall, picked up a peanut, paused and looked at me for a few seconds before leaving.  The closest this scrub jay came to me was recently when I was feeding the squirrel. He landed beside me, looked right at me and squawked as if to say, “Hey!  That’s MY peanut!”  The squawk made the poor little squirrel jump, and he scampered away.

Some day this scrub jay will take a peanut from me, just like in the image above.  I just have to be patient and “try by not trying.”

Do you have examples of “try by not trying” that you would be willing to share?  I’d love to know about it!

Linking up with:
WILD BIRD WEDNESDAY

Human Canaries and Friendship

In addition to many of the health issues I’ve talked about in this blog, one of the major conditions that has increasingly affected my daily life is my extreme sensitivity to fragrances and certain chemicals.  People with sensitivities like me, and others diagnosed with “multiple chemical sensitivity (MCS)” are referred to as “canaries.”  We are human canaries.  The name “canary” comes from a past practice of miners who would take the birds into the mines with them as an animal sentinel, to provide advanced warning of danger.  Canaries are more sensitive to toxic gases than humans, so if the bird stopped singing, got sick, or died, the miners would know they needed to escape the mine or use protective gear before they were affected.

Low levels of fragrances and chemicals that most people probably wouldn’t notice, will make me very sick, so sick that I could be in bed with debilitating migraines, intense sinus pressure and pain, nausea and vomiting for a few days.  This includes perfumes and colognes, scented candles, scented lotions, air fresheners, scented laundry products, personal care products, even some flowers, etc.  Almost anything that contains fragrance, and some cleaning chemicals, solvents, paints, etc., will affect me.

I don’t know why I am sensitive.  I’ve seen doctors and specialists about this.  My specialist said that the only thing I can do is to avoid fragrances and chemicals as much as I can.  With me, it is an “irritant” and irritants need to be avoided.

I don’t know if there was an initial exposure that started this sensitivity, but I wasn’t always sensitive.  It started in my mid-twenties with a few perfumes and gradually escalated over the years to the point where low level exposures or even one whiff of a certain fragrance will make me very ill.  Right now, given that the “why” is unknown, the “why” to me is not as important as the fact than “I am” sensitive and need to make significant adjustments in my life and choose my health.  Other health issues themselves are already isolating enough, but fragrance and chemical sensitivities make it even worse.  This problem affects many decisions I make, and my social life is very limited.  Some of the decisions I’m faced with frequently are:

• What products I buy – from household cleaning products to soaps, lotions, makeup, etc.  They need to be “fragrance free” or “unscented.”
• What stores, restaurants or other establishments I visit – Will there be air fresheners, scented candles, or too many fragranced people?
• What public events I attend – Is it indoors or outdoors?  Outdoors is better with fresh air.  In the last few years, I haven’t been able to attend events that I enjoy, like family get-togethers, ballets, musicals, concerts, parties.
• What volunteer or other community service activities I get involved in.
• Who I can be around and who I can socialize with – Will they be wearing fragranced products around me?
• Whose car I ride in.
• Who rides in our cars – Hubby has had to “de-fragrance” our vehicle when people wearing fragrances have ridden with him.
• Whose home I visit – Do they apply perfume, use air fresheners or other scented products?
• Who can enter my home – I have to be strict about who enters where I live.  It is the only place where we can make it safe for my condition.  Fragrances, especially many scented laundry products these days leave lingering fragrances, especially in upholstery, for several days or weeks.  Sometimes I have to leave my home and stay with my mother while hubby “de-fragrances” it.
• What home projects hubby can work on and when – Most likely I will have to leave the house if chemicals are involved.
• When I can go outside –Smells from fragranced laundry products emitted from neighborhood dryer vents trigger a reaction.
• Who my “true” friends are – True and caring friends will help you.  They will be considerate, respectful and nonjudgmental of your sensitivities if they value a relationship with you.

Chemical and fragrance sensitivities is a growing problem, and it is concerning to me to learn about the types of ingredients that make up many fragrances these days.  I will post more about this later.  Over ten years ago when I was searching the Internet for information and resources, I came across only a couple of websites with passing mentions of the problem.  Now, when you Google “fragrance sensitivity,” “chemical sensitivity,” “multiple chemical sensitivity” etc., there seems to be endless hits.

For those of us who live with this kind of condition, it is real.  It’s not all in our heads.  I will post more information in the future.  But for now, here’s a question to think about (inspired by blogs from two MCS sufferers, Sherri Connell and Linda Sepp).  If a friend or loved one mentions that a certain fragrance or chemical around is making them ill, even if you are the one using a fragranced product, what would you do?

Would you choose the product?

Or

Would you choose the friendship and try to help get your friend away from the problem, or make yourself and your home safe when you are around your friend, regardless of the type of sensitivity they have (food, flowers, environmental, electromagnetic, etc.)?

Here are a few fellow bloggers I know of who live with similar sensitivities.  If you or someone you know is struggling with chemical or other sensitivities, please feel free to share your experiences in the comments section or let me know if you/they have a blog.

• MCS Gal – Cooking for the Chemically Sensitive
  
• Victoria A Photography
• Sherri Connell – Choose Friendships over Fragrances
• Linda Sepp - Life With Multiple Chemical Sensitivity
• SondasMCSChatter - Multiple Chemical Sensitivities
• Scent Free Girl
• Two Tone Studio – A Journey of Healing Through Art
• Allergictomylifebattle – Life can change in an instant
• The Labyrinth – and finding my way out
• In a Sea of Chemicals – How I deal with MCS…
• Fragrance Free Living
• Anaphylaxing – …..Unscent your life
• Perceptionoverjudgment
• Annelie – on asthma, humor and the world

Take A Break

.
Muddy water, let stand, becomes clear.  ~ Lao Tzu

Sometimes we just need to take a break to clear our minds or let fresh thoughts and ideas flow in.  Here are just a few examples:

• If we are struggling with finding a solution to a problem, it may help to let it rest for a while.  Go for a walk or do something else, and return to the problem refreshed rather than continuing to spin our wheels.
• If we are overcome by chronic physical or emotional pain, perhaps a meditative or other relaxing activity will temporarily lessen the intensity.
• If thoughts are racing through our minds, anxiety is elevated, or tempers are flying in a heated interaction, calming down can clear or minimize the turmoil.
• etc.

What are some muddy waters you have faced and what have you done to let it become clear?

Never Give Up

Nana korobi ya oki (七転び八起き) is a Japanese proverb that means, “seven times down, eight times up.”

nana (七) = 7
korobi (転び) = fall down
ya (八) = 8
oki (起き) = get up

It is a saying about perseverance and not giving up no matter how many times you are knocked down.  I’ve seen this proverb associated with the Japanese Daruma doll, which is a hollow, round Japanese traditional doll modeled after Bodhidharma, the founder of the Zen sect of Buddhism.  These dolls are weighted at the bottom in a way that will always return to an upright position when tilted over.

Never Give Up.  May you always get up after a fall.

Daruma Doll
Photo courtesy: Wikipedia