My Advice to MCS Newbies (for what it is worth): Please do not become overwhelmed. (I know this is probably impossible.) You may need a few years to get the basics needed for reclaiming your health, with many financial and social obstacles and health set backs. It is a lot easier today than it was for my friend’s father who got MCS in the 1970s from working in a plastics factory. It is even much easier than it was 5 years ago due to mothers being aware of chemicals causing asthma, childhood cancer, endocrine problems, behavioral troubles and sometimes even autism. That isn’t to say it’s easy, just that it is easier, if that is possible to imagine. Perhaps in 20 years it will be even easier because of what you do now.
There is no one size fits all treatment aside from reducing exposures as much as possible. I personally often lived without electricity or running water for much of my first 20 years, so many of these problems were not as hard for me to solve or tolerate. Being in poverty much of the time (social work pays next to nothing) and always aware of the environmental crisis, little of these problems surprised me, which may have given me an edge. With having undiagnosed spastic Cerebral Palsy until age 38 and DNA-caused constant vague immune problems, dealing with medical professionals who harmed me or said “I don’t know” while living in pain was my norm. MCS symptoms like vasomotor rhinusitis plagued me from birth. My always healthy mother had a harder time dealing with the way disabled people are treated in the system than I did, expecting the system to work.
My personal list I share with others is as follows, with the understanding we are all different and that it is best to tackle what is easiest and chip away at the rest: Have the books Multiple Chemical Sensitivity: A Survival Guide 2nd Ed. by Pamela Reed Gibson PhD (http://www.earthrivebooks.com/excerpts.html has free excerpts), Living Well With Multiple Chemical Sensitivity by Lisa Bradford, and perhaps Clean and Green: The Complete Guide to Non-Toxic and Environmentally Safe Housekeeping by Annie Berthold-Bond (a woman with MCS).
Find a doctor to download and sign this letter about MCS on their letterhead: http://www.healsoaz.org/hospital_access.htm Carry with you at all times. Very doctors or hospitals honor it, but it can help when dealing with “ordinary people.”
Create your own health journal http://www.becomeyourownhealthcareadvocate.com/_pages/health_journal.htm Since most people on your medical “team” (if you have any medical care at all!) probably do not have time to communicate with each other, I have found this to be very helpful. Also I don’t have to worry I left out some test or specialist or medication I tried. I record every supplement, food, BM, symptom, exposure, blood sugar, sleep, etc every day and it has helped find patterns. Even if you have a caring doctor, they will be overworked. MCS is a Do It Yourself illness.
Have DNA testing for detoxification pathways. (See Resources) Have blood tests done for heavy metals, trace minerals, viruses, vitamins, thyroid, liver, Lyme and anything else the doctor, probably a Naturopath, suggests. Take supplements to balance your system, with no ingredients to which you are allergic, and as close to a food source as possible. Most supplements are garbage and often do not contain what they claim to provide. (My expensive fancy turmeric-based arthritis supplement was cellulose dyed orange. Remember: Almost everyone is in it for the money, not because they care.) Eliminate foods to find sensitivies and allergies. Try the food rotation diet and if needed digestive enzymes. Eat only organic if possible. If you buy directly from the farm it is cheaper. Often the very healthy organ meats from pasture raised, organic animals are free!
Get an organic cotton futon with no pesticide sprays or a natural rubber mattress. (Get samples first.) Same for pillows. Heart of Vermont has organic cotton exercise mattes. Two of them, especially with wool, make a decent sleeping bag as long as you do not get them wet.
Obtain real air purifiers like from EI Foust or IQ Air or another reputable company. (Get samples first.)
Have your bathing water filtered to stop chlorine. Make sure your drinking water has no chemicals including fluoride. Berkey with ceramic filters are popular.
Stop using plastic with food. Store food in glass jars, which can be easily recycled. You may need to stop using plastic all together.
Wear an activated carbon filter mask when there is an exposure. Different brands work for different people. Note that the chemicals still may sting your eyes and possibly still cause a reaction.
Get a tent now and off gas it by hanging it and a few sheets of plastic in the hot sun every day for a year or more. If you become homeless, the tent will be less toxic for the future.
If American, learn about the Americans with Disabilities Act (ADA). (See Legal Support.) Any agency that receives government funding must accommodate MCS to the best of their ability. The more you can help them do that by having educated yourself on what works for you, the harder it is for them to say no. You never need to reveal what your disability is. A doctor’s verification may be necessary, but again the law does not allow anyone to ask what the disability is. I’ve won what could have turned into court cases without a doctor’s help. Persistence. Form alliances with other disabled persons.
Do not use a cell phone or WiFi.
Before you buy anything, check what the return policy is. If you buy clothing that is toxic, return it. If you have washed it, it cannot be returned. We wasted money on organic clothing we spent weeks trying to detox. Remember that most people with MCS are in crisis, “brain fog” or fatigued. Do not expect much help from “MCS community.” If someone with MCS is helpful, be very grateful. The search for safe housing or ways to make housing safer is often a lifelong journey. We have come to rely on ShurTape 3″ sold by EI Foust for sealing counters, door frames, closets, etc. Many electronics will need to be “off gassed.” That means they are turned on and off regularly, perhaps for months, in a nontoxic place where you don’t spend any time.
When throwing away all your toxic belongings, see if someone has an attic or barn where you can safely store things like photographs to be scanned at a later date. If you have things of value, ask to store them as well until you can sell them. Apply for social security disability now. There is a code for MCS, but most people get the benefits with a diagnosis of fibromyalgia or mental illness. Expect to be turned down the first time. Any assets turn into silver dollars, prepaid credit cards or gift cards. (Something that friends working in battered women’s shelters taught me.)
Follow Dr Grace Ziem’s Environmental Control Plan. http://www.chemicalinjury.net/environmentalcontrols.htm
If you are ink intolerant, have a safe place for all your records. Fill out forms wearing your mask, perhaps outside.
Dupont Tyvek 1414 suits can be worn to protect your safe clothing when in a toxic place or for persons who need to be in your home to wear to protect you somewhat from their chemicals. They are not perfect by any means. Interesting that a company responsible for many of these toxic poisons makes the suits with a vapor barrier to protect people from their own products. Sigh.
Learn to sew.
Oxygen helps many. Your doctor may need to say you have migraine or cluster headaches for your insurance to pay for it. You will probably need a ceramic mask and tygon tubing from Dr Rea in Dallas, which insurance will not cover.
Many people due to impaired methylation pathways of the liver find that B12 methyl (there are many forms of B12 – one is cyanide!) and glutathione helps with brain fog and other symptoms. Both are powerful detoxifiers so your dose should not be so high that you get sicker as toxins flood your system. You may need a doctor’s prescription.
Liver support with internal milk seed thistle/silymarin, burdock root, dandelion root and beets (root and greens), along with castor oil or clay packs externally over liver, often help the liver. The external packs may detox you too quickly. Helping toxins leave your body by the skin or mouth – Epson salt and baking soda baths, dry brushing, oil pulling and sweating (not in a sauna, but by wearing extra clothes and gently exercising perhaps) – are popular.
If you are homeless, remember many of us have been there. You are not alone. It may surprise you how many severe hardships you can survive and what a heroic person you are. It’s not “fair,” but it is probably closer to what the majority of your ancestors often faced. The lie that life is easy and happiness is to be expected is a new, unrealistic belief that causes misery for many.
Meditation and prayer seem to be almost universal in handling the stress, especially when an exposure has caused “brain fog,” emotional reactivity or near death experiences. Everyone finds their own way. You can be an atheist and still use meditation to calm yourself.
Honor your grief. The betrayals and heartbreaks can be overwhelming. We’ve all been there. That persons who “love” us would rather stay in their denial or not put themselves out for their family and friends is a horrific realization. They really did leave you to die. Also you probably have many dreams to mourn, loss of identity, precious belongings, spiritual or philosophical beliefs, activities and much more to grieve. Luckily grief comes in waves, so as to not totally overwhelm us, but it does return. Emotional coping skills for what can only be called living in a disaster are hard to find in self help books about what now appear to be very trivial problems. Don’t beat yourself up for not knowing how to perfectly manage this! Most people you know will never experience what you are. Someone in Haiti may be able to understand.
Know that your new lifestyle not only helps you to survive but also many others, humans and otherwise. You’ll use less, buy Fair Trade and organic more often, and not add to the cesspool of toxicity. Possibly MCS could save the human species, along with many others. Environmental illness has long been a problem for financially poorer nations and communities. Now it’s affecting the most privileged and elite in the world, like those of us who have Internet access and can read this website. MCS will force the wealthier nations to take stock of what they are doing to themselves, which could help the environment and disenfranchised persons worldwide. Somehow this really comforts me. On my best days, being part of this global and personal healing feels like an honor. (Other times it feels like a horror.)
Instead of worrying about “Why Me?” I tend/try to think “Someone has to have it. So what will I do?” OK, there are still times when I wonder why me, but I think of Concentration Camps, rape slavery, persons suffering from huge Climate Change disasters, child labor, drowning polar bears, the 200 species that went extinct today, gang warfare, the other Environmental Illnesses like autism and cancer, persons killed for their skin color, religion, gender or sexual orientation and then I realize how sheltered most people in our culture are. The oppression and horror of living with MCS actually unites me with the majority of the people of the world. When it gets very bad I remember my favorite play, Henrik Ibsen’s An Enemy of the People. In it, a poor town thinks its natural spring has healing power and becomes obsessed with the probably financial growth from becoming a spa town. The “enemy of the people” is the intelligent, caring man who knows that the water is poisonous. Throughout time, wise humans have warned the ignorant and greedy. We’re in good company.
I do say there is a gift in MCS. Dr Thauna Abrin often says I should write the book “The Gift of MCS.” An old friend of mine, writer and social justice activist Jennifer Silverman, co-editor of My Baby Rides the Short Bus, had her life changed when her first child was diagnosed with autism. I told her I was drafted into disability activism and she understood. Although both us were radical activists, the focus of our adult work was decided by the problems forced upon us. As all the ills of the world are systemically linked, no matter which one you heal, you are healing the whole. The gift of MCS is that in the large picture your life profoundly changes the world.
My mother used to teach Bible Study and would have members study what happens when someone receives the Call. Those persons’ lives usually become very hard, others turn against them and at first they resist the Call. When they accept reality, life doesn’t become easier, but they have the attitude to handle the Call. I saw this in my own activist heroines and heroes. As an animist who loves natural sciences, MCS to me is inevitable, the end result of “Civilization” from mass agriculture to the Industrial Age to the Atomic Age to the Age of Chemicals. As someone following my ancestors’ indigenous culture where the tribe is more important than the individual, it is honor to serve, even if no one seems to appreciate it now. You’ve been drafted into being a leader, a prophetic voice, and an activist. The personal is political.