It’s always been in the back of my mind to do a page like this, chronicling my experience in dealing with MCS over my lifetime. It can accomplish a couple of things:
1. Give myself an outlet to ‘put it all out there’ so to speak, instead of bottled up inside me where the thoughts spin round and round like a twister, tossing everything into chaos and utter disorganization until I can’t make any sense of it. And,
2. Give others who are interested in understanding ‘what I’ve got’ a place where it’s all laid out in logical order (hopefully) and thus can be a reference place where answers to questions about what I can and can’t tolerate can be located easily.
What I’ve Got
First, what I have has a name: MCS (acronym for Multiple Chemical Sensitivity)
One of the most well written, concise explanations that I have found of this condition is found on this page:
http://www.ecomall.com/greenshopping/mcs.htm
It’s neat how that article is subtitled ‘the Canary in the Coal Mine’. That’s exactly what someone once said to me years ago when I explained my condition to them! “You’re just like the canary in the coal mine who can sense the danger before anyone else is even aware of it”
Some quotes I’d especially like to highlight:
“Laboratory analysis of common fragranced products show that they contain extremely toxic chemicals, including chemicals on the EPA’s Hazardous Waste list.”
“People with MCS are anywhere from 100 to 1,000 times more sensitive to synthetic fragrances than are healthy people. This is why the person with MCS can be devastated by a fragrance that someone nearby is wearing, while the person wearing the fragrance and receiving a far greater exposure is not bothered by it.”
“For a person with MCS, the simplest daily activities such as working, shopping, going to church or a restaurant can be incredibly painful- both physically and emotionally. Oftentimes a person with MCS has to leave work suddenly upon exposure to a chemical, resulting in lost wages and sometimes lost jobs. With rapidly rising mental confusion and difficulty speaking, they simply cannot stick around to explain their situation politely.”
So, if I’ve have seemed rude or stand-off-ish to any of you, please forgive me, and I hope you can better understand now! Here’s a hug to make up for all the ones I’ve missed!
My earliest memories
Ever since I can remember, like 3 years old, I’ve suffered from debilitating migraines so bad that I would just lie on my bed (in between throwing up), the tears rolling down my cheeks and wishing I could just vanish somehow. But it wasn’t until I was in my 40’s that I knew what the cause was… chemicals!! Lots of them!
My father was an insulation contractor and kept many of his materials in our garage, which doubled as my playhouse on rainy days. Many of those insulation materials, especially back in the 50s and 60s, were loaded with toxic chemicals like formaldehyde, and dozens of others. I used to use the empty boxes to build forts or to tumble around inside of!
Then, my mother was a hairdresser who, before I can remember, used to take me to her salon while she daily used perms, shampoos, conditioners, hair sprays, facial masks, etc., etc., etc.
Then, at home, in the 50s and 60s my mother was into any and every kind of convenience foods and thus I was raised on artificial anything and everything… including instant mashed potatoes if you can imagine! Then there was the food dyes… KoolAid, Freshie, jelly beans, red licorice, suckers, popsicles, coloured frostings, sprinkles, Fizzies, ‘strawberry’ Nestles Quick, and on and on and on… not to mention the huge shaker of ‘Accent’ that my mom kept on the stove to sprinkle over everything she cooked. In case you’re not familiar with Accent… it was essentially pure MSG (monosodium glutamate) notorious for causing severe symptoms in loads of Chinese food lovers!
To add to all of the above, my mother LOVED her perfumes, and loved to perm and spray MY hair!!
Another contributing factor to my developing MCS at an early age was the fact that in our neighbourhood where I grew up in Scarborough, a suburb of Toronto, there were numerous factories where I loved to play around that vented their fumes directly into my airspace. One of these was the Faberge factory!
So, as you can see, I came by it honestly!
The Realization
So, I went through my whole childhood, adolescence, child-bearing and child-raising years suffering from sudden migraines that sometimes lasted for days. Many futile visits to doctors who prescribed this, that and the other thing, sent me for brain scans, sent me to neurologists, sent me to ‘analysts’ who, of course, chalked everything up to stress, and ad nauseum !!
I began to have severe attacks at meetings back when we lived in BC. One particular night, I asked a sister to drive me home. After driving a short distance I immediately asked her to pull over as I was going to throw up! I later discovered on subsequent meeting nights, that every time I smelled her perfume I got a migraine.
One day, it occurred to me that every time my son came out of the bathroom after washing his hair with his own fav shampoo (Pert) I would get an instant migraine. I remember begging him to change his shampoo.
Then, one day after a circuit assembly, we got into our car that had been heating up inside from the sun, and I immediately got a migraine and even passed out momentarily! There was a strong fragrance in the car, which upon investigation turned out to be a spilled bottle of Calvin Kline ‘Eternity’ cologne that our son had packed in his bag under the seat!
That event was a turning point for my coming to discover that there was such a thing as severe sensitivities to fragrances. I went home after that ‘toxic spill’ with a migraine that refused to be treated with my normal extra strength Tylenol and sleeping it off. I threw up every few minutes and just wished I could die. Rich took me to the hospital where they gave me Demerol which did nothing at all for my pain. As the doctor leaned over me to shine a light in my pupils, I instantly pushed him away and promptly threw up. His cologne had caused this reaction. He gave me another shot of Demerol, which, again, had no effect. Finally he gave me Morphine and put me in an ambulance to rush me to another hospital. The ambulance attendant later confided to Richard that he was sure I had an aneurysm! I was three days in the hospital on morphine until the pain finally went away. They did all kinds of tests on me, to know avail, and sent me home with a big question mark!
When I got home, I got on the computer and typed into google ‘headaches nausea fragrance Eternity’ and the first thing that came up was an article about the California government’s lawsuit for the Calvin Klein product ‘Eternity’. A petition had been issued to the FDA to have the product declared ‘misbranded’ . The petition stated in part:
“Each ingredient used in a cosmetic product and each finished cosmetic product shall be adequately substantiated for safety prior to marketing. Any such ingredient or product whose safety is not adequately substantiated prior to marketing is misbranded unless it contains the following conspicuous statement on the principal display panel: “Warning — The safety of this product has not be determined.”
Here is another article that dissects the ingredients in Eternity and explains what the adverse reactions are to each:
http://www.howlatthemoon.org.uk/behind-the-label-perfume/
A little more digging and I discovered MCS – Multiple Chemical Sensitivity. Armed with that information, I’ve been able to ward off chemical attacks simply by avoiding being around them! The most common triggers I encounter in my weekly schedule are:
Perfumes and colognes, after-shaves, scented underarm deodorants, scented hair products (shampoo and conditioners, hair sprays and gels, dry shampoos, etc), laundry products that cling to clothing like fabric softeners (dryer sheets and liquid softeners and/or strong detergents).
Not Only Fragrances
You may have noted in my paragraph about my childhood exposure to chemicals that I listed a lot of artificially coloured and/or flavoured food items. Any food that contains chemicals is a trigger for an attack. So, I know it’s annoying, but if I question you about every little ingredient in a dish you’ve prepared, please be patient and understanding. Now you know the reason behind it 🙂
Then there is the whole subject of building materials! New carpeting, vinyl wallpaper, chair upholstery, petroleum based paints, stains, etc., vinyl flooring, press-board, all of these ‘off-gas’ VOCs (volatile organic compounds) like benzene, formaldehyde, toluene and xylene, styrene, and perchloroethylene (or tetrachloroethylene) Long-term exposure to volatile organic compounds can cause damage to the liver, kidneys, and central nervous system. Short-term exposure to volatile organic compounds can cause eye and respiratory tract irritation, headaches, dizziness, visual disorders, fatigue, loss of coordination, allergic skin reactions, nausea, and memory impairment.
These chemicals are also off-gassed in new cars (new car smell), which is why you see me ‘sniff-testing’ your car if I’m placed in your car group!
“People with severe MCS become housebound and isolated, unable to function in society or have any social life whatsoever. They must make extreme adaptations in order to cope. Often they move from place to place in search of a home that isn’t too toxic to live in. They might not be able to to have any printed material or writing pens in their home because most inks are toxic. Just being near a newspaper or opening a phonebook can trigger an attack. They can’t have carpeting, vinyl or laminate flooring because the glues are toxic, no synthetic fabrics, or any plastics, either.
No plastics? Think about it: plastics are in food containers, computer keyboards and monitors, countertops and cabinetry, and synthetic fibers such as nylon and polyester found in bedding, upholstery, draperies and carpeting.”
Now, I have not reached the point of having ‘severe MCS’, but if I’m not careful to avoid exposure to chemicals now, the sensitivity will increase. Each exposure tends to add to the accumulation in my system and the symptoms increase in severity and frequency.
I can relate somewhat to the above quote though, in that we have had to move at least 3 times because of MCS. Once we actually had to sell our house and move to a different town because the KH was extensively renovated and I could no longer attend meetings there. More recently, we again had to move from Mayerthorpe congregation because of the major KH renovation there.
Other Stuff
Sometimes I have to turn down an invitation to someone’s home, or worse, have to leave prematurely (one of the hardest things for me.) This is usually because of things like plugin air-fresheners, scented candles, new carpeting, laundry products, or moth balls (rare these days, but I have encountered them in some homes)
Another quote from that article is appropriate at this point under the heading ‘How Can I Help?’
“First of all, don’t take their requests as a personal insult. They’re not reacting to YOU, they’re reacting to chemicals you’re using. It’s not that they don’t like your perfume, but that they can’t tolerate the chemicals your perfume contains.”
The article I’ve been quoting from has a lot of good suggestions for alternate products under that same sub-title ‘How Can I Help Someone Who Has MCS? Here’s the link again: http://www.ecomall.com/greenshopping/mcs.htm
Some have wondered what products I use, so here is my list, starting from top to bottom:
The Head
- Shampoo: ArtNaturals Argan Oil Shampoo
- Conditioner: I don’t use any as I don’t seem to need it with this shampoo
- Hairspray: I haven’t found a hairspray that is totally scent-free, so I don’t use any. But when I want some product in my hair, I have a pomade that I make myself with beeswax and coconut oil. Just a dab in the palm of my hand (it melts at body temp) then worked through the hair. As it returns to room temperature it gives the a hair a bit of ‘hold’. This has just a very faint scent of honey from the beeswax.
- Face/body Cream: I just use straight organic coconut oil that has no coconut taste or smell, like this one: Spectrum Coconut Oil
- Lipstick/Lip gloss: Anything without a fragrance (I am especially sensitive to flavoured/scented lip glosses)
- Toothpaste: I have never been bothered by the scent of anyone else’s toothpaste, so this is not a suggestion for others to buy unless you are also chemical sensitive and want a chemical-free brand of toothpaste: Tom’s Toothpaste
- Gum: Most gums these days are artifically flavoured/sweetened. I can’t tolerate those, so I buy: PUR Gum Wintergreen Mint Aspartame Free
The Rest of the Body (and other stuff)
- Deodorant: Amazingly enough, this easy-to-find, inexpensive deodorant works for both Rich and me: Mennen Speedstick Power Unscented
- Shaving Cream: I just use a tiny bit of my shampoo (above) it lathers up nice.
- Body Lotions: When I have dry skin anywhere… arms, face, legs, feet… I use the coconut oil (above)
- Nail polish/Nail polish remover: Most nail polishes don’t bother me if I breath through my mouth until it’s dry (LOL), and nail polish remover is no problem as long as it is the old fashioned ‘Cutex – original’… it’s not scented, and is a very basic chemical.
- Laundry Detergent: Since we’ve moved to Alberta I can’t find ‘DownEast’ products (duh) but the Gold d’Or brand ‘Pure’ is a good substitute.
- Fabric Softener: (one of the biggest chemical offenders) I use any brand of ‘unscented’ or ‘fragrance free’ dryer sheets (Even Bounce makes a scent free version!). Currently using the generic brand one they sell at the store in Evansburg. It says fragrance free, but when you open it there is a mild scent, but when the clothes come out of the dryer, they have no scent whatsoever.
- Dry Cleaning: One thing there is no (practical or scent free) substitute for, so when Richard’s suits need dry cleaning, I suffer for a few weeks until the smell dissipates, so needless to say we try not to have to do that very often. For me, I don’t buy anything that needs dry cleaning.
- Shoe Polish: Can’t handle that stuff AT ALL… so if the shoes are looking like they need it, we just mask the scuffs with either coconut oil or Dubbin.
- Dish Washing Liquid: Gold d’Or PURE brand works great!
- Cleaning products: For the floor, I just use a bit of the dishwashing liquid (above) with a splash of Bleach (unscented) in the bucket. For windows I use a spray bottle with water and white vinegar added. For grimy cupboards, or just about anything else, I have a spray bottle filled with water and a few drops of Eucalptus oil. For toilets, I use the old fashioned ‘Original’ Comet.
Double Whammy!
To top things off nicely, a couple of years ago I got bit by a deer tick that jumped off Richard’s work clothes as I was loading them into the washing machine. I didn’t realize until the next day that the tick was still attached to me (it was now blown up big enough to see)… yuck. Anyway, I got the ‘bullseye rash’ and the whole bit, and lately more and more Lyme Disease symptoms are occurring. So, since Lyme disease also attacks the auto-immune system, my fight with MCS is all that much more difficult! But that’s a whole ‘nuther story. Go to my ‘When Life Gives You Lyme‘ page.
So, you see, my MCS has been with me my entire life. It has certainly made a difference in my quality of life, but then, who doesn’t have something that they suffer or endure because of this dying old system of things. The bottom line is “we know that all creation is groaning together and being in pain together until now.” Romans 8:22 We all look forward to the day when all things are made new… but without harmful toxins! 🙂
Thanks for listening and caring!