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?

Fragrance - Choosing 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.)?

Fragrance - Choosing Friendship

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.

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53 Comments (+add yours?)

  1. palomino72
    Mar 05, 2013 @ 18:07:37

    I like the canary analogy, I think I understand your condition much better now. Very enlightening post, thank you 🙂

    Reply

  2. palomino72
    Mar 05, 2013 @ 18:19:36

    Reblogged this on radiance and commented:
    This is a fantastic post by Ichigo Ichie about Multiple Chemical Sensitivity, a condition that seems to be affecting more and more people in various ways. This explained a lot to me as I have never really understood the condition.

    Reply

  3. Kathryn Chastain Treat
    Mar 05, 2013 @ 18:35:34

    Thank you for including my blog.

    Reply

  4. Kathryn Chastain Treat
    Mar 05, 2013 @ 18:43:30

    My sensitivities started when I was exposed to mold.

    Reply

  5. victoriaaphotography
    Mar 05, 2013 @ 19:18:53

    MCS (Multiple Chemical Sensitivty) is a big problem for me, but as I rarely go out socially now, (maybe 3-4 times a year & then ask people to refrain from wearing perfume or any strong deodorants), and live on my own on a Govt Disability Pension, I am lucky enough to have pretty good control over where I go, what I do & how I live. When I go out on Photography excursions, I try to choose open-air locations & crowd-free afternoons – in the outdoors – away from traffic & chemicals. I even try to use certain buses and/or modern trams which are more open and less likely to be crowded.

    I get a sense that more & more people worldwide are becoming sensitive to their environment, so I am not alone.

    Even some organic & environmentally friendly products affect me, so staying with my highly environmentally/organic/vegetarian fussy friends caused a problem and I have not been able to stay in their country home since a very adverse reaction in 2009.

    The more symptomatic I am with my CFS & FM, the more restricted I am in my ability to go out, but at least I can walk quickly through a department store now. There was a time when I had to hold my nose & breathe through my mouth in some shops and even walking past the entrance of a perfumed store was enough to cause dizziness, severe headaches and/or other symptoms.

    I had to go outside and wait until the Pharmacist filled a drug prescription the other week, as the sales assistant had lit a scented candle placed on the serving counter and I couldn’t breathe (to stand & wait in the Store).

    The funny part about my MCS is that I can use the lemon-scented cleaning products made by a particular common supermarket brand, but not some fragrance-free speciality cleaners. The trouble is, I have to walk down the ‘cleaning’ product aisle in the supermarket to get to them. I have to walk very quickly and breathe very shallowly through my mouth in some aisles of a supermarket.

    I can’t remember when I became so sensitive, but I was lucky in the last few years of office work (up to quitting in Feb 2010) in that 2 other ladies had allergies or sensitivities too, so we were a perfume-free office.

    People with Multiple Chemical Sensitivities (MCS) have a restricted life that even affects their relationships with family and the very closest of friends.

    My life revolves around the Natural Environment or outdoors, and most of my contact with people is via the internet.

    Reply

    • miche123
      Mar 05, 2013 @ 20:27:10

      Hi, are you in Melbourne, Australia? I’m about to do photography at Victoria University next semester.

      Reply

    • Fergiemoto
      Mar 19, 2013 @ 17:25:59

      We’ve had a couple of quick exchanges in the past about our sensitivities, and thank you so much for sharing more about your experiences, Vicki. We certainly find ways to manage with our sensitivities and still try to get out as much as possible. Being in nature is certainly healing and beneficial in so many ways. Oh, and the hold your nose and “breathe through the mouth” – I do that quite often hoping to minimize the results of a fragrance/chemical exposure.

      Reply

  6. miche123
    Mar 05, 2013 @ 20:24:55

    Thanks for including me. Here is another one: http://countrywomanpaints.com/watercolor-candy/
    At least we are all in good company!

    Reply

  7. sondasmcschatter
    Mar 05, 2013 @ 22:14:00

    THANK YOU FOR LISTING MY BLOG!!!!!!!!!!!!!!! SONDA

    Reply

  8. Trackback: Human Canaries and Friendship | Ichigo Ichie | sondasmcschatter
  9. TBM
    Mar 06, 2013 @ 00:48:26

    I didn’t know about this. I know I’m allergic to perfumes and when I get a good whiff I feel ill. But your experiences sound horrible. On most days I don’t wear any scents at all–if my friend or partner had this condition I don’t see any issue of getting rid of my fragrances in order to hang out. Of course I would need some education on laundry detergents, lotions, and such. I wish you well and thanks for all the information.

    Reply

    • Fergiemoto
      Mar 19, 2013 @ 17:29:24

      Thank you, TBM. I’m learning that it is healthier for people and the environment to go fragrance free as much as possible. Thank you for your feedback.

      Reply

  10. marina kanavaki
    Mar 06, 2013 @ 03:33:36

    Great article!!! I’m not perfume sensitive [even though I rarely use them] but I am allergic to many many things, so I know exactly what you mean!
    On your question, of course i would think of my friend first and help any way i could. I think that the question should be the other way round, why should someone not do that!! 🙂

    Reply

    • Fergiemoto
      Mar 19, 2013 @ 17:31:55

      Thank you for your feedback, Marina, and yes, that is what the question should be. Regardless of the sensitivity or allergy, it’s still difficult, but we manage what we can, make alterations in our lives, and press on the best we can.
      🙂

      Reply

  11. mcsgal
    Mar 06, 2013 @ 06:15:31

    Great post. You have said it well. Thanks for including my blog.

    Reply

  12. Playamart - Zeebra Designs
    Mar 06, 2013 @ 08:21:19

    This is a great post and will help others to understand what it’s like to dodge those chemicals. many people just don’t ‘get it.’
    cigarette smoke affects my contact lenses, and i have had to wean away from one couple because of their smoking habits.. period. they just don’t ‘get it,’ and have had no choice except to quietly wean away. we can’t force someone to awaken unless they are ready.

    latin america is now using a lot of aspartame-sweetened powdered drinks, and many times in a restaurant, i suspect that the drink was made with aspartame. i usually ask for water and dodge the suspect. one restaurant owner said, ‘you are the first person who has ever asked or cared.’ they are now more aware and are trying to wean away from msg and aspartame, which they never knew were harmful.

    here’s my recent post about my sensitivities.

    http://playamart.wordpress.com/2013/02/15/g-for-gallo-garzagarrobo-gafas-and-gasp-glutamoto-monosodico/

    z

    Reply

    • Fergiemoto
      Mar 19, 2013 @ 17:43:27

      Thank you so much for your feedback, Lisa. Sorry to learn you have had to wean yourself away from a relationship in order to protect your health.
      I try to avoid MSG, and I don’t use artificial sweeteners. In general, I rarely have a soft drink, diet or otherwise.

      Reply

  13. tearoomdelights
    Mar 08, 2013 @ 06:47:16

    What a dreadful condition. It must be extremely difficult to avoid fragrances, given that virtually everyone uses them in some form or another – detergents, toiletries, perfumes, etc. I’m often aware of a whiff of perfume or some other fragrance when I pass someone and I notice them particularly because I’m interested in fragrances, so I can quite imagine how awful this must be for you. I think any good friend would avoid using the fragrance to make your life more bearable, it’s not exactly a big deal to give up a smell while you’re with a certain person, is it? I’m glad you have contact with lots of others who have the same problem, it’s good that have that support.

    Reply

    • Fergiemoto
      Mar 19, 2013 @ 17:48:03

      Yes, it is really difficult because fragrances are everywhere. This affects so many aspects of one’s life and is limiting as far as where we can go. It is isolating, and social lives are greatly hindered. Thank you so much for commenting and showing compassion and support in your words. This makes a big difference to those who live with sensitivities.

      Reply

  14. Trackback: My Friends Don’t Stink | MCS Gal
  15. Annelie
    Mar 10, 2013 @ 05:00:58

    Reply

  16. Annelie Molin
    Mar 15, 2013 @ 00:57:10

    Thanks for the link. 🙂

    Reply

  17. Liz
    Mar 16, 2013 @ 12:26:35

    I’m an mcser in Ohio. Linked through Linda Sepp’s blog. Sick building and chronic longterm odorless carbon monoxide exposure for me. I hear our blood brain barrier is one of the problems.I wish people would not pity us as much as learn from us. It’s like someone no longer being able to tolerate cigarettes. People including doctors wouldn’t try to get you “normal” again so you can constantly be around it. Can people realise cigerette smoke is toxic and you shouldn’t be forced to breathe it at work etc but like smokers the people that think synthetics are no problem are really no different than smokers that think they have no problems. I don’t want to be like these people again and my sixth(to them sick)sense protects me.

    Reply

  18. butilookgood
    Mar 16, 2013 @ 14:40:54

    Love the illustrations! Thank you for including a link to my site! ~Sherri Connell

    Reply

  19. samokan
    Mar 18, 2013 @ 21:04:27

    I have no idea this condition existed. I am allergic to perfume or any strong scent it gives me headache but only when I am exposed to it for a few minutes but as soon as I get fresh air, I am okay again.

    Thanks for all the information.

    Reply

    • Fergiemoto
      Mar 19, 2013 @ 17:56:05

      Thank you for stopping by and sharing your experiences, Samokan. Interesting that there is a name for the condition now, and unfortunate that it is a growing problem. When I first saw a doctor several years ago, we just said ‘sensitive to fragrances.’

      Reply

  20. campanulladellaanna
    Mar 20, 2013 @ 02:44:51

    Interesting, thank you for sharing my friend 🙂

    Reply

  21. Katherine
    Mar 21, 2013 @ 15:47:46

    Another fellow sufferer of MCS here. I understand completely how isolating and limiting it is. It’s been 20 years for me. Attending weddings by standing outside the church, birthday parties lurking outside the back door. I’m about to have a conversation with my neighbour…her kids won’t be able to come over to play with mine any more because of her washing powder/fabric softener.
    Be strong and look for the positive in every day. It is the only way.

    Reply

  22. Armida
    Apr 10, 2013 @ 05:55:25

    Your site, your art, your sensitivities, your creativity are wonderful gifts to us. Thank you for expressing yourself so beautifully. Your cartoons on MCSers are very effective.

    Reply

  23. Trackback: MAY 2013 | MCS AWARENESS MONTH | Thought | 4 Thought
  24. Trackback: Worth Reading: Other Bloggers Write About MCS/ES and ME/CFS | Linda Sepp
  25. inaseaofchemicals
    Apr 23, 2013 @ 16:57:33

    Reblogged this on In A Sea of Chemicals and commented:
    This is a great resource for those of us with MCS. This is a great example of how I feel and what I have to do on a daily basis.

    Reply

  26. Anaphylaxing
    Apr 24, 2013 @ 14:24:44

    Great post

    Its so tough and limiting isn’t it? I feel the same way.

    Reply

  27. Miche
    Jun 08, 2013 @ 15:11:23

    It’s a life fraught with difficulty. I’m going to put a sign on my front door: http://www.fragrancefreeliving.com/wp-content/themes/mystique/pdfs/ffl-poster.pdf

    I’ve been lucky with my classes at Uni. All of them were fragrance free this year apart from one where i had to leave and go to the perfume free room in the library.

    But in my homelife, I’ve not been so lucky, some people just don’t get ‘it’ and it can be so frustrating. Sometimes I ask people not to come over and just leave me alone for the weekend. That way I can breath without pain or other symptoms. I keep a change of clothes for people when they visit but some of them resent that (or something?) and the situation can be fraught with difficulty. Oh, and I buy so many fragrance free products as gifts. Lately though it’s wearing me down.

    Thank you for posting this, and linking to my blog. I shall link back too.

    I love it that there are so many of us on the internet now. Together we are a powerful force! May I please re-blog a part of your post on my blog? It’s relevant and important information. I want to show people how similar our lives are.

    As for the why. I’ve been chasing this for 10 years. I was 33 when it happened, and I wore a lot of fragrance and had false nails and used cleaning products (while in the shower!) and used Round up and drove a car that was a convertible, Those were my exposures. I see two doctors who both have different theories: one says it’s an immunological problem, the other says it’s a toxicological problem! Me, I just want to get to a place where I’m not sick, somewhere I can breathe… I’d do anything!

    Reply

    • Fergiemoto
      Jun 11, 2013 @ 10:06:54

      Thank you so much for sharing your story, Michellina!

      Yes, you may reblog on your blog, and thank you for asking and being interesting in including the information on your blog. I always request a link back to my blog, also.

      It’s encouraging to hear that your classes were all fragrance free. That is a rare thing.
      Thank goodness for the internet. Years ago when I was trying to find more information about my sensitivities, I was lucky to come across a website with even a passing mention of the problem. I used to feel alone, but now I know I am not and that there are others struggling the same. It’s a good support community.
      For myself, I realize that I probably will never find out the ‘why.’ The fact is that I have become and “am” sensitive, and I just have to protect myself the best I can and minimize exposures.

      Reply

  28. Miche
    Jun 09, 2013 @ 22:54:55

    Hi, I’ve added your blog to this list: http://the-labyrinth.com/2013/05/01/environmental-illness-websites-from-around-the-world/ It’s a fantastic list created by The Environmental Illness Network Minnesota: http://mn.environmentalillnessnetwork.org

    This is my favourite list in the world!
    My other is this one: http://the-labyrinth.com/fragrance-free-news/1315-2/

    What country are you in, if you don’t mind me asking?
    I think there needs to be a list of fragrance free products that people can pass around so that the fragranced people can be better informed and make better choices. There are not many people who would deliberately harm others once they are educated. (It’s sad that there are some though.)

    Warm regards 🙂

    Michellina

    Reply

    • Fergiemoto
      Jun 11, 2013 @ 09:53:39

      Thank you very much for adding my blog to the list, Michellina! Much appreciated! We need a list of resources like you have assembled. It can sure save time instead of having to browse the internet so much looking for information.

      I am in the western United States. I agree with having a list of fragrance free products. The availability of those products varies depending on what country one is in.

      Reply

  29. Trackback: Gratitude and Friendships without Fragrance
  30. Trackback: A Welcoming Engagement | Thought | 4 Thought
  31. Trackback: My Friends Don't Stink | MCS Gal @ sensitivetochemicals.comMCS Gal @ sensitivetochemicals.com
  32. butilookgood
    Sep 06, 2013 @ 14:45:22

    Thank you for blogging about this important issue millions of us live with! And thank you for including my website as a resource! http://www.SherriConnell.com

    Reply

  33. Trackback: Imagine How This Feels…

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