Still Talking Avoidance

I briefly mentioned the office, which I found to be the worst place for my MCS. I worked in a typical "cube farm" where everyone's nasty scents wafted to the entire area. I mentioned masks, which I have no experience with, so you will have to do your own research. What I didn't mention is that some people have brought the issue to Human Resources as a health concern and have been able to either telecommute or work in a "safe" area of the office. Unfortunately, I think the success rate is fairly low.

Avoiding triggers in other places such as stores, theaters, and restaurants can be difficult. In a restaurant, if it's not crowded, you can try to ask for a different table, but there's no guarantee that there won't be another trigger when you move. The same goes for a theater. If it's not assigned seating, try to move. Even if it is assigned seating, moving probably won't be a problem unless the people whose seat you move into show up. In stores, it can be a little easier because people are moving around. Still, that cleaning products aisle!

So, what to do? Don't go into into the cleaning products aisle unless you need to. When I go into it, I hold my breath as long as I can. If you pass by someone stinky, get away ASAP. We all react differently. Some people react when they get just the tiniest whiff of an offending chemical. Others are OK unless it assaults them for a few minutes or more.

When out in public, many MCS sufferers wear a mask. Some have been made fun of because of it, but if it keeps you from reacting, so what?

I have had to leave places because of the chemicals. It's frustrating to pay for a concert ticket then listen to it from the lobby, but that's better than spending the next day in bed with a migraine or breathing problems or whatever your particular reactions are.

You may want to stay home more often. Groceries and other items can be delivered. Movies come to pay-per-view and cable much faster than they used to. The phone and computer are great for keeping in touch with friends and family, especially now that we have Skype and Facetime. Make your home as comfortable as you can so you want to be there.

Spending time outdoors can help. Take walks in the woods, hang out in a park, find places where the air is clean and you can relax and feel safe.

This is a lonely illness, so find ways to connect with people that don't put you at risk for exposure. Explain it to your friends and see if they will go fragrance-free for you. See if your area has an MCS or Chemical Injury Meet Up group. If meeting in person is too difficult, meet online. There are plenty of MCS Facebook groups.

More on Avoidance and Backlash and Being Around People

One more thing about avoiding triggers at home: visitors and workers. When someone is coming to your house either for social reasons or to do some work, there is nothing wrong with asking them to avoid wearing fragrance. However, this might not work. Sometimes people think they do not have fragrance on because they are not wearing perfume or cologne, but they have on a scented lotion or hairspray or they used dryer sheets on their clothes, etc. Educating people about this issue is difficult and often backfires.

For example, I had a co-worker who had a body odor issue. He decided to move to a desk right next to me. The person on his other side got one of those gel air "fresheners" and put a fan on it blowing across the BO guy and right into my cubicle. I very politely asked her to move the "freshener" and the fan so it no longer blew in my face. She did so, but a few days later, there were two more of those poisonous things on her cubicle wall. Yes, on the top of the wall, not in her cubicle

So, what to do?
At home:
It really depends on how strict you want to be. You have the right to refuse to admit people to your home if they don't comply, but then you could be stuck with things not getting done.
If I need to let a stinky person in, I do, but I turned on my whole-house air cleaner and open both doors.
I always keep my bedroom door closed so there is one room without whatever smells get into the house.
At the office:
I got a desktop air cleaner and made it blow right into my face. That helped somewhat.
Some people wear masks. My version was just to breath through a tissue or paper towel held over my nose.
Some offices will allow people to move to a different area, but I found that so many people wear fragrance that is hard to find a safe area.
If you can telecommute, that would be great.

Avoidance - more about home

Hello again.

On my last post, I talked about avoidance at home, but neglected to mention neighbors. Many MCS sufferers, whether in a house or apartment, have issues with neighbors, supers, and landlords. When your neighbor is using scented dryer sheets or your super is cleaning the hall with a product containing ammonia and fragrance, and those chemicals are drifting into your space, a reaction can occur.

Keeping those chemicals out can be difficult and frustrating. I have not tried anything because this is not a major problem for me, but I'll report about what others have told me.

Some people tape up their windows. I expect that weather stripping on windows and doors may also help. I just don't know if you'll get enough fresh air if you tape up permanently.

I have read suggestions that you could ask the "offenders" to change to safe products. I can't imaging that this would do any good, but buying them products might.

I was told that it is possible to create higher pressure inside than outside which would prevent the outside air from coming in. I have no idea how that is done or how much it would cost, but you could discuss it with a contractor.

Another issue is people coming into the house such as delivery people or tradesmen. I try to ask for people who are fragrance-free, but they don't always cooperate. It is up to you to decide if you want to let them in your house or not. I usually do, but once I sent a floor installation crew away and called to remind their office that I had requested fragrance free. The next crew they sent was fine.

When I let "stinky" people in, I turn on my air cleaner and exhaust fan. If weather permits, I open windows and doors until the stink is gone.

Guests can be another issue. I let people know in advance that I cannot tolerate fragrance and that they cannot wear perfumes or other fragrances in my home or car. I also make sure they know why so they don't feel insulted. Not everyone will necessarily cooperate.

This is not an exact science. You have to figure out what works for you.

What Can I Do About It? Avoidance - at home

The best thing to do for MCS is avoid your triggers. I know, you have to work, go grocery shopping, have a social life, etc. So let's start with your home.

Personal care products: Make sure that everything you use on your body is as pure and natural as possible. Most of us with MCS avoid fragrances of all kinds. I have fragrance-free shampoo, conditioner, deodorant, and lotion. Fragrance chemicals do not have to be listed on labels and many have not been tested for their effects on people.
However, fragrances are not the only problems for us. Some people have figured out what chemicals they react to, but I find that nearly impossible, so I try to avoid anything that might be an issue. To help avoid troubling chemicals in your personal care products, you can go to www.ewg.org which is the Environmental Working Group. They have tested many products and you can search on the type of product you are looking for such as deodorant or soap for their results and ratings.
In addition to using safe products yourself, I recommend that everyone in your household use them as the fragrances and possibly some other chemicals can get into the air.

Air "fresheners": No no no no no. Do not use them. If your house gets stuffy or smelly, open windows. You could also try using baking soda, charcoal, or another non-chemical product that absorbs odors. An electric air cleaner is a great way to clean the air. I recommend using one that has a charcoal filter to eliminate odors.

Cleaning products: Most commercial cleaning products contain fragrance, ammonia, and other harmful chemicals. I do almost all my cleaning with baking soda, white vinegar, and alcohol. Other things that MCS sufferers can usually use are lemons and borax. I use white vinegar for windows and mirrors; baking soda for counters, sinks, and tub; alcohol mixed with water for tiles; white vinegar mixed with water for wood floors. If you need ideas on what to use for a specific job, googling should help. Steam is another cleaning option.

We'll discuss other ways to avoid triggers in the next post.

How do I know if I have MCS?

How do you know if you have MCS? Many of us are self-diagnosed because it can be hard to find a doctor who "believes in" MCS.

Finding a doctor: In the USA, mainstream doctors have not yet accepted MCS as a diagnosis. To try to find one who does, do an online search in your area for a doctor who specializes in Environmental Illness. Unfortunately, I cannot recommend the one who diagnosed me because he has retired. He was an Allergist. However, not all Allergists "believe". It is also possible that you may find help from a Naturopath, though insurance may not cover those visits.

Self-diagnosis: Please be reminded that I am not a medical professional and my advive is based on my own experiences and those of other MCS sufferers who I have spoken with as well as some reading. Basically, if you have negative reactions to chemicals, you probably have MCS. The reactions can be in any body system. For me, the reactions are primarily in the respiratory and nervous systems and include headache, irritated lungs, sore throat, and emotional changes. I primarily react to fragrance chemicals in perfumes, lotions, air "fresheners", and cleaning solutions.

MCS reactions can be mild or very severe and often get worse as time goes on. Most of us can trace the beginning of our symptoms to a specific event. For me, it was four years working in a sick building with little air flow.

Musings about getting recognition

Here in the USA and, I assume, many other countries, MCS is not accepted as a diagnosis by most doctors. However, I have realized that certain aspects of it are. This makes me wonder if calling it a syndrome rather than an illness might help.

One of the problems with getting the mainstream medical community to accept MCS as a diagnosis is that it affects so many different organ systems. Also, it affects different people in different ways. Making it even more complex is the fact that different chemicals can affect one person in different ways. For example, some perfumes give me a headache, some cause nausea, and others give me respiratory symptoms.

Now, here is an example to show what I mean when I say that parts of MCS are accepted: I was having severe sinus symptoms and was sent to an allergist. When I told him that I am chemically sensitive, he responded, "what does that mean?" I explained. He examined me and tested me for common allergens which came out negative. He diagnosed me with chronic non-allergic rhinitis and explained that means that things that I breathe in are causing the symptoms. Then he said that could be where the reaction to fragrance chemicals comes in.

Here's another example: I have asthma. My primary care physician, who does accept MCS, does accept that fragrance chemicals can trigger an asthma attack.

The examples show that mainstream doctors who do not accept MCS do accept that fragrance chemicals can do certain bad things to the human body. If we can put together enough examples of single-system effects like these, maybe we can start to get the medical community to look at this syndrome.

What is MCS?

MCS stands for Multiple Chemical Sensitivity. It is also know as an environmental illness. It is characterized by reactions to multiple chemicals in modern life.
For many people, including me, fragrance chemicals tend to be the worst and they are found in most cleaning products, shampoos and soaps, and hair sprays as well as perfumes, colognes, air "fresheners" (which I call air odorizers), and scented candles.
Besides fragrance, other chemicals can also cause reactions. The news car smell and new furniture smells are made up of several chemicals. Many people react to petroleum products. Some react to pesticides in food.
The reactions can vary from person to person and, in one person, from chemical to chemical. My reactions vary depending on the trigger and include headache, sore throat, irritated lungs, lightheadedness, and twitches.