MCS Survival Techniques and Resources


Toni Temple, President Ohio Network for the Chemically Injured
4/16/1996


TECHNIQUES

  • ACCEPT THAT YOU HAVE MCS

    1. Do not feel guilty about it. You did not cause your disability.

    2. Do not apologize to others for having chemical sensitivities or allow yourself to be placed on the defensive. You cannot control your reactions to chemical exposures. (you can control some exposures)
    3. Keep up your self-esteem. Don’t allow what others say to influence your high regard for yourself.
    4. Recognize that not everyone is yet able to accept this disease as reality. You cannot change the way anyone thinks. But you can change your reactions to the way you respond to other people.
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    5. Don't wallow in self-pity. There are others much worse off.
    6. You may not be able to live your life as you did, but you can adjust your life to be able to do new activities or old activities in a new way. Do something constructive.
    7. Don't spend time complaining to others and pulling each other down. It’s non-productive and depressing to both parties. Be solution-oriented and positive. (COMPLAIN WHERE IT COUNTS - TO THOSE WHO CAN DO SOMETHING ABOUT IT!)
    8. Be a detective. Learn to protect yourself.
    9. Be creative. With your food, your clothing and your environment
    10. Take "one day at a time" when you must. MCS can be disabling at times to both your body and your mind.
    11. Be nice to yourself when you're having a really bad day. You are “allowed” to be sick and take “time out”. Those suffering from cancer, lupus, arthritis, asthma and other diseases and disabilities have bad days too. However, do not use your disability as an excuse to neglect your responsibilities and make attempts to perform your duties when you can.
  • EDUCATE YOURSELF WITH VALID INFORMATION ON MCS. Do not rely on:
    1. Friends, neighbors or relatives
    2. Clerks in health food stores (they may know vitamins but they do not know your medical history and may harm you
    3. Magazine articles
    4. Advertising claims
  • FIND GOOD, REPUTABLE PHYSICIAN(S) WHO BELIEVES IN MCS
    1. Communicate with them
    2. Expect them to be human (human beings can make mistakes)
    3. Understand that a physician cannot cure you or give you “the magic pill”
    4. Teach them to educate others about your needs (hospitals, medical technicians, etc.)
    5. Disagree with your physicians when necessary
    6. Change physicians, if you must, in order to get the proper care
  • LISTEN TO YOUR BODY TALK
    1. Sixth Sense
    2. Feelings
    3. Fight or Flight
    4. Don’t believe everything you hear or read! Fine tune all education to fit your needs
    5. There's always a reason - and it can’t always be explained right away
  • BE A SURVIVOR!!
    1. Don’t over-schedule or over-plan (especially when you are feeling better).
    2. Recognize that stress makes any illness worse and try to avoid it.
    3. Help others with MCS. It will make you feel better. Remember, someone helped you............
    4. Get involved. Stand up and be counted with others with MCS. “united we stand” (and get help); “Divided we fall” (and don't get help). There is strength in numbers and we need to let everyone know we do exist!
      1. Network
      2. Participate in credible MCS medical studies and research
      3. Join local and national support groups and become involved in their committees
      4. Contact your legislators, let them know about your needs and ask them to help. If you don’t ask, you don’t “receive”.
    5. Prioritize. If things get overwhelming, do what you absolutely have to and let the rest go until you’re feeling better.
    6. Don’t take things personally. Family, friends and others can be cruel at times. Don’t let it get to you. Consider the source and the intentions. If behaviors are meant to upset you, perhaps it’s time to give these family members and friends a rest and spend more time with the supportive people in your life.
    7. Do your share. Educate others. Your family, friends, neighbors, employers, politicians, the media, your church and the community. Plant seeds where you can.
    8. Read all labels and directions and obtain factual data on everything. (Be sure your sources are accurate.) This means food, clothing, cleaning products, grooming products, pharmaceutical necessities, pet products, lawncare products and services, dry cleaning, paper products, etc.
    EDUCATIONAL RESOURCES
      There are numerous educational resources, some of which are listed below. Be sure to verify your sources for accuracy, integrity and intent.
    1. Support Groups
    2. MCS newsletters
    3. Libraries (regular, university, legal and medical libraries)
    4. Newspapers, magazines and periodicals
    5. Hot line and health information numbers (no charge for information)
      1. NIOSH (National Institute of Science and Health) (800) 35-NIOSH
      2. Enviro-Health (800) 643-4794
      3. Environmental Health Watch (Cleveland, Ohio ) (216) 961-4646
      4. Many other numbers can be obtained through networking and support groups in your area. (Also see ONFCI support group form)
    6. MSDS Sheets (Manufacturer’s Safety Data Sheets) Contain chemicals used in products and known dangers from using them are listed.
    7. Government Agency Offices (U.S. Government Printing Office, OSHA, EPA, Boards of Health, etc.)
    8. Public Educational Television and Radio.
    9. Networking
    10. Computer Data Bases
    11. Use your imagination - there are numerous resources for educating yourself
    TIPS FROM TOXIC TONI

    Keep your car windows closed when backing up. (fumes enter the car)
    Be considerate of others and protect yourself by turning your car engine off when you are not driving the car. Many leave their cars running in front of stores, libraries, and yes, even in their yards, while they wait for others. This bad habit affects the breathing of those with MCS and asthma and is a waste of fresh air, as well as gas and money!
    If you are able to read the newspaper, don’t do it while you're eating, especially finger foods. (watch your children on this one too) Never bring them in your bedroom. Air out your mail and any papers with an objectionable odor prior to bringing them in the house. It really helps.
    Do not let others use your personal telephone (home or office). Many hair products, lotions, makeup & other products can contaminate the phone for the chemically sensitive.