These are the questions that first came to mind when wondering about MCS and how it affected Peter’s life. If you have additional questions you’d like me to ask him, I bet he’d be happy to expand on the information here. He relays many personal experiences here, and and gives good advice.
In an upcoming post, I’ll send along some links for making your own cleaning supplies, things I’ve stumbled upon here and there.
Peter is a long-time motorcycle rider and is a generally adventurous and outdoorsy person. He’s not someone I think of as “sickly” or “fussy;” this is a legitimate physical problem that has affected his life radically. And not conveniently, either.
Confounded by Quilting: Thanks for answering these questions. How did your doctor determine your diagnosis?
Peter: She didn’t. Most people with MCS visit about nine doctors/specialists before receiving the correct diagnosis. I think I visited eight and it was me who found someone to help me.
I started getting sick the day I started a new job. I’d been working in service at a GM dealership in Bancroft, Ontario for 12 years, eventually becoming the Service Manager. I left there on a Friday in May, 2003 and started in Parts at a GM dealership in Orangeville, Ontario the following Monday. Right from the start I was having problems with concentration and absorbing new information. Some mental tasks that’d been easy on Friday were a tad more difficult on Monday.
I put this down to the new job, new expectations, new everything, etc. Didn’t think much about it until after I’d been forced to quit. My lawyer asked me to write a life resume and detail everything that had happened. Talking with other people and discussing symptoms and learning more about MCS allowed me to see the early clues. Hindsight, eh?
My doctor dealt with some of my early symptoms but they were coming in fast and furious and changing almost daily and by early 2004 she gave up. Literally. She said, “I give up. I have no ideas. What do you want to do?” and she left it up to me. I’d come up with an idea, she’d okay a specialist….
It was [a high-ranking doctor in the Navy, also a motorcycling friend of ours] who gave me a clue and steered me in the right direction. he looked at all my test results and suggested I get a toxicology screening. I asked my GP and she didn’t know anything about it and left it up to me to learn about it and find somewhere to get it done.
After literally months of research on the net, i found a toxicologist in Ottawa who was doing research only but he pointed me at two doctors in Mississauga, Ontario who were practicing and seeing patients. I called one, the receptionist recognized my symptoms and gave me a name for it. Chemical sensitivities. Once I had a search word, this whole world opened up to me.
From my initial symptom to my diagnosis took about a year and a half.
CbQ: What were some of the early symptoms you recall experiencing?
Peter: From day one, slight confusion. After that I became anemic. I now do weekly self injections of B12. Short term memory loss and poor concentration came next and then it snowballed. I have all this written down at home. I’ll get you more details in a few days.
CbQ: What sorts of tests did you undergo to get your diagnosis?
Peter: The correct diagnosis? LOL! process of elimination mostly and some direct observation of my symptoms when exposed to certain chemicals.
CbQ: Do people with MCS tend to suffer the same symptoms, or are they diverse?
Peter: Yes and yes. “Brain fog”, confusion seems to be fairly common. poor short term memory seems fairly common. Fibro and CFS seem to be fairly common but past that we all seem to react somewhat differently to various chemicals.
CbQ: When you’re out in public, do you have to take special precautions? What sort?
Peter: Depends. I like to wear a 3M 8577 disposable mask when I’m in public places and when I’m driving. It has a thin layer of charcoal that helps absorb a percentage of VOC’s. It’s not 100% or even close to it but it does help. I try to stay away from crowds, areas where I can’t easily leave. I’ve had to leave restaurants because someone scented sat at a table close by and I started getting sick from the chems.
The problem lately has been obtaining that mask. 3M has been unreliable for any products for over a year and I haven’t been able to buy any this year. they come 10/box for $60 and sometimes are only good for a few hours.
If I end up having to go somewhere that has a lot of VOC’s, like a grocery store, i come home, bag my clothes and shower before doing much else. I do a LOT of laundry….
CbQ: When you’re affected, what are your most common symptoms?
Peter: Usually, I get stupid. Well, more stupid. 🙂 I ache more, sometimes I throw up and get diarrhea too. Theres a huge list but those are the first wave.
CbQ: To alleviate an attack, what things do you have to do?
Peter: Showering and getting the chemicals off my skin is a good start. We absorb a lot through our skin. I take desensitising drops daily and they help a bit after an exposure. Drinking a glass of water with a high concentration of baking soda helps. I understand that many people with MCS are fairly acidic and exposures aggravate that. tri-salts are the best but cost money.
Eating clean foods, unprocessed foods, organic foods makes a noticeable difference to my overall health.
CbQ: What are some uncommon sources of chemicals affecting you, things people might not think of?
Peter: Everything? LOL! Most people have no idea how many chemicals they’re exposed to in everyday life. The most common are fabric softeners, laundry products and personal care products. I read somewhere that in the US, 89% of the chemicals in personal care products have never been tested for their effects on human beings. This is only the individual chemicals, not even counting the various combinations of chemicals.
Cigarette and wood smoke are full of chemicals. Natural gas and propane heaters rarely burn cleanly and emit all sorts of chemicals. Diesel exhaust.
Formaldehyde seems to be in almost everything these days and it’s a common trigger for MCSers.
CbQ: What are some of the replacement products you use for personal hygiene and household cleaning?
Peter: That’s easy. I alternate between baking soda and vinegar for my laundry so I don’t get sensitized to either. I found a safe all purpose cleaning liquid that I use for my hand and body soap. I use a salt crystal for deodorant… when I use deodorant… Hydrogen peroxide or vinegar for normal cleaning.
Those few pretty much replace all the cleaning products I used to use.
Oh, I use baking soda for toothpaste now too.
CbQ: Do strong natural scents affect you (flowers, essential oils, et cetera?)
Peter: Some do. It’s not the scent that affects people with MCS, it’s the chemicals used to create that scent. Being able to smell something is just an early warning system for us. Some natural occuring chemicals affect some people. I have problems with apples after they’ve been sitting for a few days. There’s a chemical that’s in citrus fruits and citrus products that makes many people very sick. D-limione or something. I can never remember the correct spelling.
Essential oils are a joke. There’s very few that are pure and from an organic source now. It’s way expensive. A lot of them are synthetic or have been genetically modified. In general, i just stay away from them. very few people who promote them can trace their product back to a clean, organic source and boy, do they get pissed when you question them. 🙂
CbQ: I remember for awhile you were living in a tent in the middle of the winter – what was that caused by?
Peter: The owners of my apartment building sprayed Killex on the lawn one day while i was out. My windows were open and I got major sick when i came home. Just driving onto the property started it.
I ended up in Emergency and spent the next three months in a tent. Mid Sept till mid Dec. I only left the bush because it was getting too dangerous. With the snow loads and the high winds there were trees coming down pretty much every night. My apartment still makes me sick.
I did find out I could be comfy sleeping in a tent at -20C. -25C was getting a bit difficult to sort out. -27C was the coldest I slept in.
I was way back in the bush so I had no heat source.
CbQ: Is there one group of chemicals you react more strongly to than others?
Peter: Formaldehyde is a biggie and whatever is in fabric softeners will kick my ass.
CbQ: What are some of the resources you used as you learned about leading a more chemical-free life?
Peter: MCS groups were the biggest contributor of information, links, thoughts and mental and emotional support. A friend of mine in Edmonton has a blog that might interest you.
CbQ: Was converting a difficult process? What were some of your frustrations?
Peter: Hell ya! I look back at it now and it seems so easy but the biggest problem is coming to grips with realizing that your life, up to the point of getting that diagnosis, is over. Finished. To successfully deal with chemical exposures it requires rethinking almost everything you do on a daily basis. You have to examine every action you take, every product you use, every product you’re exposed to as well as most of us have to deal with the chemicals and actions of those around us, close to us.
Almost everything I was doing for 47 years was now harmful to my health in some way. Every passion I had was harmful or was something I couldn’t do, like reading. I lost the ability to read and reading has been something that’s thrilled me for years. I could read the words but I couldn’t absorb them or remember them long enough to be able to figure out what was meant in a sentence.
I lost some physical coordination and balance. I was unable to ride [motorcycles] for quite a while.
CbQ: If you didn’t have MCS, would you say the changes you have made would have improved your quality of life regardless, or does the inconvenience outweigh the health benefits?
Peter: The changes I’ve made are wonderful! Amazing! I had no idea of the impact of chemicals on our environment and our bodies. For 47 years I trusted “The System” to look after me. My government, my doctors, my politicians….. I mean, that’s why we hired them, right?
Getting MCS forced me to examine everything I did and used and it’s impact on me and my little world and the bigger world. What an eye opener. What an education. What a sheeple I was.
Making the changes was a royal pain in the patooey while I was doing it. A huge effort. Now that I have more info and really understand what I was doing to myself, it doesn’t seem like such a big thing at all.
If I was magically cured tomorrow, I’d still think the same way about chemicals and would live pretty much as cleanly as I am now. I’d probably drink a bit more though. I miss my Jack Daniels……
CbQ: Are you still able to do most of the things you enjoy?
Peter: I’m not able to really enjoy any of the things I did pre-MCS except being out in the bush. I’ve relearned how to read but I do it poorly now. I can’t spend much time around motorcycles or be involved in motorcycling. I can’t spend much time with my family or friends…..
CbQ: If you could pass along some words of advice to people wondering if they or a loved one has MCS, what would they be?
Peter: First thing? Find and join an email group like
and ask some questions. That’s been the starting point for most of my learning. Once you get a handle on what chemical sensitivies are, then you’ll be able to understand how to deal with it.
Second is that it’s very important to understand that chemical sensitivities is not an allergic reaction. Allergies can be determined by a blood test that shows…. something that escapes my mind at the moment. IGE? Some people with MCS also have allergies but that’s a separate issue.
MCS is a poisoning of the body by chemicals. The chemicals that affect me, affect every other human being also. The difference is that most people’s bodies have the ability to recognize a problem, detoxify it and dump it before it makes a noticeable difference to them. For some reason, people with MCS are no longer able to protect themselves. Everything that’s attacking my body is also attacking yours.
Third, is starting to control your environment. We have increasingly limited control over our environment as we move farther away from our bodies. I have pretty good control over what’s applied to my skin. I have little control over the air outside my house.
Spend your time and initial efforts on the closest things to your body. Look at the chemicals you’re applying to your skin. Soaps, cremes, deodorants, skin products, any scented product. Look at the chemicals you’re putting inside your bodies. Drugs, prescription and recreational, alcohol, food, water, liquids.
That’s where you’ll get the most bang for your buck.
Then expand your circle to include chemicals that touch your body. Soaps, detergents, fabric softeners, the chemicals that are soaked into your clothing. Permanent press, anti static products, any cloth that has been treated to repel stains… Those are all full of formaldehyde.
And fourth, don’t depend on anyone else for your personal safety. Although this may reek of “conspiracy theorists”, the government is not there to protect you. Just because something is approved for sale doesn’t mean it’s safe at all. Cigarettes have been approved for sale by the government and i doubt there’s anyone who would disagree that they’re harmful to us. hell, the government even has writing on the packaging telling you they’re going to harm you.
I have a huge document at home that I can send you if you really want to get more in depth in this. It’s a 27 page document that details my life before and after MCS. Something i put together for my lawyer.