Find the right healthcare professional to work with you. The best person is someone who has recovered from this illness or is familiar with it, and is currently working with individuals with MCS, EI, or CI. Chances are excellent that your General Practice doctor will know little to none about MCS.
Be honest about your health. Be as specific as you can be about your symptoms.
Keep a daily journal. Note what you eat, and where you go to every day. Over time you will learn to see patterns. For example you may note that whenever you go grocery shopping you come home with a headache, or whenever you eat pasta and spaghetti sauce, you notice that the next day, you have body aches.
Be patient. You didn’t get this way overnight and it will take time to get better. Be patient with the protocol you are given. Depending on your level of toxicity and other factors, you may have to start with minimal doses of supplements. The doses may seem too small to do anything, but you are working towards tolerance of a supplement. If you take too much too soon, you’ll make yourself sick, as you detox too fast and dump more toxins than your liver can process.
Trust Yourself. No one knows your body better than you do. If you react to a supplement or protocol, tell your healthcare practitioner. They may tell you that their other patients are fine with this protocol or supplement. Gently, but firmly remind them that you are an individual, and what bothers one person may not bother another. If a protocol or supplement is making you sick, than it needs to be eliminated or cut down to a tolerable level for you.
Clean home. You need to remove any toxic, chemicals from your home. Anyone with MCS, EI, or CI should not be around any toxic cleaning products, fragranced items (including, perfumes, deodorant, candles, air fresheners, dryer sheets, dry cleaned clothes, fabric softeners, etc.) These will only contribute to your illness.
Safe environment. You need to have a safe home or at least a safe room somewhere in your home. This is a room where you have nothing that makes you sick or triggers a reaction. Ultimately this should be a room with surfaces that are easily wiped down, no carpets, drapes and as above, no scented products.
Eat organic food. Eat organic food as much as possible. Many people are concerned about the price, but I have found that organic food is competitively priced by joining a food co-op. I also shop at farmers markets and find that the best deals are available at the end of the day, as farmers don’t want to have to load everything up and bring it back to the farm.
Drink clean water. Consider buying a water filter system for your home, or a filtration system that attaches to your kitchen faucet. Many grocery stores offer reverse osmosis water for 25 cents per gallon. Remember that in order to stay properly hydrated; you need to drink half your weight in ounces of water daily. So if you weigh 150 pounds, you need 75 ounces of water.
Air cleaner. Consider buying an air cleaner for your home. There are many air cleaners to choose from on the market. I like AirPura air cleaners. They are designed by a gentleman whose wife has MCS, so he gets it. No glues are used, no plastic parts, no VOC’s. The air cleaner itself is a metal cylinder on nylon wheels, with a charcoal filter blended to suit your specific needs. Since the air cleaner is on wheels, it can be easily be moved from room to room as needed. If you call them to order an air cleaner they will ask a number of questions to determine what charcoal filter would work best for your situation. If you are unsure how you’ll handle the charcoal filter, they will send you a sample to see how you handle it. Since they are in Canada, it usually takes 1-2 weeks to receive, but they are worth the wait.
Organic personal products. Always use organic products for personal care. The reality is whatever you put on your skin is absorbed into your body. The skin is the largest organ of absorption and elimination. I have two theories about personal products: One, if I can’t pronounce it, it’s probably not good for me and two, if I wouldn’t eat it, it shouldn’t be on my skin.
Clean clothes. I hate buying new clothes. Unlike most people I can’t just wear it. It has to be hung out the clothes line for a few weeks, and then I wash it a few times, before the chemical smell from the store is gone. I wouldn’t recommend airing your clothes outside if you live in a traditional neighborhood, as they will most likely be exposed to dryer sheet chemicals from the neighbors laundry, or pesticides and herbicides that others may be using. With that said, having a place to outgas new things is extremely helpful. Buy organic clothes whenever possible. Always wash you new clothes before wearing them, clothes are frequently doused with a variety of chemicals, if they’re from another country they’re sprayed with chemicals to kill any bugs, if they’re wrinkle resistant, they’re sprayed with formaldehyde and the list goes on. To learn more about synthetic clothes click here.
Shower and change clothes. Every time you leave your safe environment, you are exposed to toxins. As soon as you get home, wash your clothes, take a shower, and put on a fresh set of clean clothes. This will stop any out gassing of chemicals that are on you and your clothes from getting into your home. It will also stop your body from continuing to absorb any chemicals that are on you or your clothes.
Out gassing room. If you have the space, designate a room or area for out gassing any products before you bring them into your home. It can be a mud room, a patio or any area that is away from your general living space. I am always shocked at how many chemicals smells, there are on things I bring home. While I’m at a store, I may think something doesn’t smell bad, but as soon as I get a book, or article of clothing into my clean environment I’m overwhelmed by the fragrance it has picked up. Aside from general smells in stores from the variety of products they sell, stores also spray for bugs. I always outgas anything new, before I bring it into my home.
Support network. Everyone needs a support network, especially those who are challenged with chronic illness. It is important to have someone to share your story with, someone who understands the illness, without you needing to justify yourself or your experiences. If you are able to connect with like minded people it will make an enormous difference in the quality of your life.
Support Group. A support group is a wonderful opportunity to expand your horizons. Meeting with a group of people with MCS is a wonderful opportunity. It’s immensely helpful to hear what protocols and products have worked for others, as well as enjoying the conversation. The challenge may be in how or where to meet. You may need to meet at someone’s home, or at a designated “safe” environment. Keep in mind no place will be perfect. Decide on a regular day and time to meet so it is easier for everyone to set aside that date. You may also consider adding a time limit, especially if you meet at someone’s home, so the host/ hostess isn’t put in the awkward position of asking people to leave.
Some considerations for your group:
What is the group format?
Is it informal discussion?
Do you have a set topic?
Is time split into casual conversion followed by a learning opportunity?
Is it age specific?
Are children allowed? If so, how is childcare arranged?
What rules need to be put in place? (You may consider that on the day the group meets, everyone comes straight from their home, so as not to carry in any contaminants on their clothes that may make someone sick.)
How often do you meet?
How long are the meetings?
Having MCS, EI, or CI is a definite life changer. If you want to get better you have to make a commitment to yourself and your health and for most of us drastic life changes are required. These “basics” are things that I learned along the way, and gradually incorporated into my daily life, as finances allowed. It took a while to figure out some of these things, as initially, I didn’t know anyone with MCS, so a lot of what I did was trial and error. To be honest I still do all of the things on this list, even though my recovery is pretty much complete, I still do as much as possible to lead a chemical free, non toxic life.