Miscellaneous Pathways: You Are Never Really Stuck
There is always a way out of a maze, even if that maze is based on learning how to better cope with a chronic illness, such as MCS or EMS. This chapter offers a collection of techniques that may help you to improve your quality of life, take better care of yourself, enhance your self-esteem, and generally cope better.
Any type of chronic health problem demands increased self-nurturing. With MCS or ES, however, self-nurturing is even more important because the stresses are so pervasive and cumulative. Therefore, nurturing yourself is one of the best things you can learn to do to improve your health and well-being.
The following are some self-nurturing suggestions that may help you live better with your sensitivities. Some of the suggestions come from my experience, some come from the experience of study participants, some from the work of Jennifer Louden (1992), and some suggestions come from other sources. My hope is that at least one suggestion will work for every reader—even if only in a small way.
Write New Scripts
Depending upon the demands of their greater culture, both men and women with sensitivities may have to write new scripts for themselves in terms of the roles that they are expected to play versus the roles that they actually are able to play. In U.S. culture, for example, gender roles especially can affect the healing process. Women often are expected to give of themselves without concern for their own needs (i.e., parents, children, and partners come first). With a chronic illness or disability, this becomes impossible; you must give yourself permission to be a woman who uses her time and energy to meet her own needs. Likewise, cultural stereotypes demand that men be “breadwinners,” physically strong, tolerant of chemical irritants, and never emotionally vulnerable. These stereotypes can negatively affect even healthy men; they also have been criticized for supporting violence, disallowing men’s feelings, and emphasizing economic success over personal characteristics. Our Western industrialized models of masculinity have supported imperialism that to this day continues to steal land from Native Americans and others, a military industrial complex that has all but broken the global ecosystem, and a lack of tolerance for any other mode of being (e.g., non-industrialized societies are seen as “backward”). Environmental sensitivities demand that you write new scripts for what are considered healthy male and female behaviors.
Use Cognitive Therapy to Cope with
the Stresses of MCS/ES
Cognitive therapy is now recognized as the most effective treatment for mild and moderate depression. Research has borne out that people who are depressed tend to harbor particular forms of irrational thoughts and cognitive distortions. David Burns (1999) has written Feeling Good, The New Mood Therapy, a self-help book to help people recognize and conquer negative thoughts and distortions and replace them with more positive ways of thinking. Burns offers suggestions for increasing self-worth, replacing an “all-or-nothing” attitude and being able to see the grey areas rather than thinking in all black and white. Burns also writes about how to deal with criticism, which comes frequently to people with chronic illnesses. The book also addresses ways of dealing with guilt, anger, and irritability.
Make a Comfort Journal
Remember the appeal of coloring books, stickers, paste, scissors, and other little means to creativity? Louden (1992) suggests that you have “a safe place where you can doodle, compose, paste, and jot anything that relates to your ideas of self-nurturing.” This is not a journal about good art per se, but rather a place for you to express yourself and enjoy it. You can use whatever media are safe for you, including magazines, paints, string, yarn, pencil, leaves, anything.
Keep your journal near your bed or in another location where you can look at it easily at any time. Your journal should make you feel good. It is a good idea for it to be private, although you may wish at certain times to share it with others. I have a journal in which I draw images of what I want to come true. For example, I have drawn the covers of journals in which I want to publish future research articles, books that I want to write, and gardens that I want to grow. I have also drawn pictures of me eating dinner with people I want to get together with, animals I would like to have, and my dream farmhouse. In your comfort journal, you can draw pictures of yourself when you are healthier, make lists of items or events that you hope will come true, save mementos of activities in which you did participate, and more.
Louden (1992) suggests keeping a special box filled with items that make you feel good. They can be visual (e.g., pictures), beautiful (e.g., crystals), humorous (e.g., gag gifts), cuddly (e.g., stuffed animals), or anything else you choose. When you need to rest and/or feel better, you can take out your comfort box and play with the items in it.
Reading Children’s Books
Another suggestion of Louden’s (1992) is to read children’s books. She says that reading books written for children can provide comfort and a fresh perspective, and can recharge your imagination. You might want to get some old offgassed books from friends or from the library. You can read them to yourself and look at the pictures for diversion and rest.
Positive Self-Attribute List
When you are feeling well, make a list of everything you love about yourself. Include everything of which you are proud, especially your positive character traits, such as caring, intelligent, sensitive, loving, enthusiastic, artistic, etc. Then, when you are feeling badly, read the list to remind yourself what a good person you are. Don’t forget to remember that you were thinking clearly when you wrote the list.
Make a list of activities in which you can participate and would enjoy (Louden 1992). (You can use the upper-left corner of the anti-isolation activity grid from chapter eleven.) Take out your calendar (or make one) and actually schedule time for these activities so that there is at least one activity each day that you look forward to doing. Scheduled events can be as simple as taking a bath or as special as going on a favorite, safe outing. Other activities can include visiting friends, taking a walk, talking on the phone with a friend who makes you feel good, seeing a video, playing with your comfort box, expressing yourself in your journal, praying, and so forth.
Create a “Done” List
Louden (1992) suggests creating a “done” list just before you go to bed. That is, instead of flogging yourself about yet another day in which you didn’t accomplish what you wanted, make a list of everything you did accomplish. You might be surprised by seeing and recognizing what you did do and be better able to appreciate yourself because of this. You should include every activity on your “done” list, such as “took all my supplements (all 102 of them!)”, made dinner, read about reflexology, refrained from getting crabby after an exposure, planted one nice flower, made one phone call, etc.
Write a Letter to Yourself
When you are feeling well, write a letter to yourself that you will read while you are having a chemical reaction. It can include anything that will help you deal best and cope with an exposure, including soothing statements, encouragement, cautions regarding situations about which you want to be careful, and more. Keep the letter handy so that you can read it when you need to. Write a letter that is appropriate for you. Here is a sample letter:
Dear (your name),
You’ve had a bad exposure. It’s too bad and it’s not fair, but it will wear off in ___ hours/days. Right now you need to know that you have to be good to yourself. The exposure will wear off. Get away from any further exposure even if you feel confused. Go straight home, take powdered vitamin C, and sit with your comfort box. Be extra careful driving, and warn family members that you may be a little irritable. Tomorrow you will feel at least somewhat better.
Use Affirmations to Change the
Way You Think
Although affirmations are not an end-all cure, they can be used to restructure the way you talk to yourself which, in turn, influences how you think of yourself. Affirmations can be used in many ways. One is simply to write down positive sayings for and about yourself and display them in places where you will see them. Affirmations can relate to specific issues on which you are working, e.g., being nurturing, taking time for yourself, etc. You can open your cabinet and see a sign that says, “I am taking great care of myself and feel better because of it.” Use affirmations to bring your thinking toward what you would like for yourself as well as to reinforce how you would like to think.
You can also use affirmations in a corrective manner. Be aware of what you say to yourself. For instance, do you ever say or think any of the following statements?
Ø I’m stupid.
Ø I’ll never be better.
Ø MCS has taken everything.
Ø I’m ugly now.
Ø I have nothing to offer.
Ø I am useless now that I don’t work.
Ø What good am I to my family?
If you find yourself making a negative statement such as one of those listed above, write it down in a notebook in the left hand column. Directly across from the negative statement, write a more realistic and positive statement in the right column. For example, if you have written that you said, “I’m stupid,” you might write in the right column, “I’m coping intelligently with a difficult situation.” If you want to be more encouraging to yourself, you can say something like, “My own personal genius is becoming more apparent every day.” (!!) Another example would be to replace the negative statement, “This illness has taken everything,” with a positive affirmation such as, “I still have the gifts of intellect, faith, love, and hope” (or some other appropriate statement that lists your particular gifts). You get the idea.
Keep your notebook with you and write down negative statements and their corrective positive affirmations. If you want to, you can wear a rubber band (if you’re not allergic to the rubber) on your wrist and snap it every time you catch yourself saying (or thinking) a negative statement about yourself. The truth is, you know that these negative statements are not true. What is true is that although environmental sensitivity can cause neurological damage, it sets your priorities straight, provides deeper understanding of environmental issues, creates empathy for others with chronic illnesses, and teaches you how to live more cleanly. Does this sound like stupid?
The contributions of the MCS and ENS advocates show that their illness has not taken everything. Cindy Duehring won the Alternative Nobel Prize. Does this sound like she was useless because she didn’t engage in traditional employment?
Guided imagery may be the visual equivalent of affirmations. You can use it to better your own psychological wellness, which in turn can boost you immune functioning. For example, Mike George (2003) suggests that when feeling stuck in a rut, you mentally create a path through a dense jungle and picture yourself exiting. You can mentally free yourself as you cut down vines and obstacles in your way.
Be Your Own Perfect Loving Parent
There is nothing wrong with talking to yourself as you would like to be talked to. Your inner voice can sound like a loving parent that is encouraging, kind, and supportive. Try saying things to yourself such as, “Oh, honey, you got a lot done today. Pretty good for the obstacles you were faced with.” Or, “You sure are working hard to make a contribution. How many people have a heart so big that they spend the little bit they have to contribute to the bigger picture?” Or, “Now take your vitamins. I know they’re a pain, but you need them and deserve to have them.”
At first, you might feel stupid talking to yourself in this way. If this becomes second nature to you, however, wouldn’t you rather hear these types of comments than abusive statements that originate out of frustration? Sit down and write what you would like a loving person to say to you in your situation. Then, say it to yourself. Doesn’t it feel better than saying, “I’m stupid”?
Other Cognitive Techniques for Coping
Here are other coping techniques that were suggested by participants from all phases of my research:
“I remind myself that tomorrow will not be the same as today. If I need to cry, I cry. If I need to sleep all day, I sleep. I do not worry if I cannot sleep at night. I get up and do something interesting and useful.”
—Fifty-eight-year-old woman with MCS
“I have an informal routine that involves [doing activities in] five to ten minute increments. Energy allotment is the name of the game! It is precious and scarce, but it is a satisfying challenge to accomplish so much with that teaspoon of energy! If you saw my little garden you would not know it was a ‘five minute a day’ garden. Then, I do five minutes of housework, etc. I do a little bit of drawing, a bit of reading (depends on my brain function on any given day.) Cooking food always gets top priority. Next: Keeping clean. A phone call a day keeps the blues away, so that is next. . . . So, at the end of the day I’ve had a varied and satisfying day. These five-minute increments are interspersed with rest periods. The first five minutes of the day is the most important, however. I always start the day with a positive, hopeful bit of reading (I make affirmation signs and put them all over the walls so it’s easy to find inspiration at a glance) and a prayer for guidance ([I] . . . dump my complaints and worries on God first thing in the [morning] so I don’t have to carry them around. That takes energy!)”
—Fifty-one-year-old woman with MCS
“I practice a viewpoint . . . that if I was completely without sensitivities it would be like having an inability to feel pain. I would be around harmful substances all the time without being able to sense it. (I know when to leave an area that’s toxic because my hands—if [I’m] touching it—feel “hot.” My feet go numb and bluish). I hate being sensitive, but I don’t like pain either. For a lot of people, [having this viewpoint] would be like being in hell and saying, ‘At least it’s not cold here.’ But, it works for me (sometimes).”
—Forty-five-year-old woman with MCS
“I make time to be sick. When I make plans to leave home, socialize, [go to] doctor’s visits, drive, etc., I plan nothing for [the] following day or two. I allow myself ‘down time.’”
—Forty-six-year-old woman with MCS
“Ingenious practice? A good sense of the absurdity of the human condition and a friend who makes me laugh.”
—Forty-year-old woman with MCS
Mindfulness-Based Stress Reduction (MBSR)
Mindfulness-Based Stress Reduction (MBSR) programs were developed by Jon Kabat-Zinn for persons experiencing a wide range of chronic pain and stress-related disorders. The program is typically offered as an 8-week course, consisting of instruction in mindfulness meditation practices and gentle yoga stretching. Mindfulness training cultivates awareness by teaching people that it is possible to notice thoughts and feelings without becoming absorbed or lost in the subject matter. In this way, mindful awareness fosters a greater sense of personal control and an enhanced feeling of well-being. For example, instead of saying “My life is destroyed by my illness,” you would say to yourself “I am having the thought that my life is destroyed by my illness.” This technique gives you the distance to realize that what the mind says may not necessarily be completely true, and fosters objectivity. Mindfulness is also a valuable resource for helping people successfully manage the demands and challenges of everyday life. In fact, research literature indicates that the majority of people who complete MBSR courses report numerous positive outcomes including fewer physical and psychological symptoms, enhanced ability to cope with persistent pain and other symptoms, increased energy and vitality, and the ability to cope more effectively with stressful situations. There are currently over 400 programs across the U.S. offering MBSR programs. Although you may have access problems registering for a course due to the facility, if there are enough persons who want to learn the technique, your support group may be able to bring in an instructor.
Setting Limits, Saying “No”
Having environmental sensitivities means that you can no longer do the number of things you were once able to do. This means that you must prioritize. However, people will not stop asking you to do things that require your time and energy just because of your changed circumstances. Therefore, to survive, you will have to get good at saying “No.” If being sensitized will do anything for you, it will teach you to set priorities. Boring and obligatory activities seem all the more so when you are feeling badly; and you will reconsider exposing yourself to a bunch of junk just so someone else can be satisfied.
At some point, you will have to learn to say “No” without worrying about others’ approval. Louden (1992) makes a good point about assertiveness. She says, don’t bother looking to the other person to make it okay for you to say “No.” After all, they want you to say “Yes.” Watch other assertive people and see how they say “No.” They usually don’t apologize, worry about what others will think, or take time to wonder if they are being “fair.” If it doesn’t feel right to them, they say “No.” You can practice saying “No” to one request a day. You can learn to say, “I’ll think about it.” Listen to your body. If you are becoming tense as the person makes their request, it’s a pretty good indicator that you don’t want to say “Yes.”
Creating a Comfort Network
Louden (1992) offers the following activity as a way of clarifying—for yourself—who the supportive people in your life are and expanding your support system. There are eight steps to creating a comfort network.
1. Determine who supports you. First ask yourself the following questions to identify the strengths and weaknesses in your support system. (Feel free to adapt the questions to your situation.)
Ø Name three people you get in touch with when you are feeling depressed.
Ø Do these people usually make you feel better?
Ø Who energizes you?
Ø Whom do you like to play with?
Ø Name two people you would contact in a crisis. Do you feel you could count on these people to be there for you no matter what, and that they would not make you feel guilty or needy? Would they bring you food if you were ill? Would you feel comfortable giving them your house key?
Ø At work, whom do you seek out when you need honest feedback? Do they help you? Can you trust them?
Ø With whom would you like to discover new things? With whom would you enjoy traveling?
Ø Is there someone with whom you can discuss spiritual ideas and concerns?
2. Discern who is comforting and who is not. Recognize people’s strengths and ability when you call on them for support. One friend may be good at humor, but be unable to give comfort. It is important to call on the right people at the right times.
3. Pick people you trust. Discover what trust means to you. Write in your journal for fifteen minutes about the issue of trust. Then, assess whether the people you are close to embody the qualities of trust.
4. Listen to your body. How do you feel when you are around a friend? Ask yourself if you clench your jaw during phone conversations or breathe shallowly around certain people. If you feel nervous or fearful, or trapped or crazy around someone, this is good input for you in making decisions as to whom you should spend time with.
5. Be sure your expectations are realistic. Louden says, “If you feel abandoned and rejected by the people in your life, ask yourself if you are expecting others to take on your feelings to cure you. Don’t blame yourself, just check to see what your expectations are.” With MCS or EMS, there is a chance that the desperate part of you wants more from others than you are aware of—or than people usually give one another. Knowing this can help.
6. Strengthen your comfort network. Once you are familiar with the information in the steps above, you can assess the weaknesses in your network and perhaps come up with some solutions for strengthening it. Do you need someone to listen, someone to laugh with, someone smart to talk to? Louden says to use every situation as a chance to make contact, including the neighborhood, the gym, work, etc. (You might have to settle for the health food store, the doctor’s office, and the park.) She says to pick three people with whom you would like to strengthen your relationship and write down one step you could take to do so. With sensitivities, of course, this is all the harder, but it may not be impossible. Take one step today.
7. Ask for friendship. Louden suggests directly asking for friendship even though it is a risk. Avoid thinking that no one would want to spend time with you and risk saying something like, “I like you. I’d like to spend more time with you.”
8. Do not always unload on the same friend. This is crucial. Although there is always something to complain about, you will have to think about how the other person feels when hanging up the phone or going home from seeing you. If you expect someone to always support you, then that person’s needs are not being met. Caregivers get burned out. Louden suggests having a list of five people you can call when you need extra support. Start at the top and go as far down the list as you have to until you reach someone.
Animals can put you in touch with the natural world. Although you may not be able to tolerate certain types of animal hair or fur, some people are connected to and feel better around animals. There may be a way you can spend time with animals or even have an animal companion. If not a dog or a cat, then perhaps a turtle or a fish. Or, maybe you can have a small and beautiful aquarium or terrarium with your own lizard friends.
If you can’t have a pet, perhaps you can spend time with your neighbor’s dog or cat. Or, if you live in the country, even a cow. I have four cow pets and have seen that cows are fascinating animals who get even less respect than do people with MCS. Those of you who love animals might want to read some books by people who have special relationships or who have had healing experiences with animals. (See Appendix C for further reading.)
Perhaps you can nurture some medicinal plants, grow your own organic produce, or tend to certain types of flowers that make you feel good. It is sad that chemicals are driving many people with MCS indoors and away from the natural landscape. Assess whether it is possible for you to have some tomato plants in pots on your sunny porch, or a small plot of organic flowers that will provide you with beauty, exercise, fresh air, and a connection with the land. If you can’t have a plot, perhaps you can have one potted plant either indoors or outside. If you can tolerate it, something green and alive adds a vibrant, healthy energy to your life.
Learn to Sew with Organic Fabrics
There are many sources for organic cotton and hemp fabrics. If you are able to tolerate fabric, you might want to learn how to sew. You can make yourself some beautiful things to wear or to use in your home. You may have to detox the fabric before you can use it.
Invent Something Needed by the MCS or ES Community
You might have some idea for something that you can make and sell to others in the disability community. Can you make useful masks, aprons, a new type of air purifier, or a safe skin lotion? Many people have started small home businesses and are providing others with needed services. Perhaps you can add your own invention to the list and sell it through newsletters of the advocacy groups. Remember that many creative and enterprising people began simply. For example, the healthy homebuilder John Bower began by trying to make a safe home for his wife Lynn. Can you invent a chemical-free product and sell it?
Improve Your Intellectual Knowledge
Is there some subject that you would like to study? Perhaps you are interested in history, the English classics, architecture, or botany. If you have time and are able to read, this may be a great opportunity to pursue learning. (Think of all the people who have gotten college degrees while serving time in prison.) You may be able to read aired-out books, peruse the Web, or borrow resources at your local library.
Nurture Your Spirituality
Do you believe in the benefits of spirituality but have trouble making a real connection? There are countless inspirational books that can help you to nurture the spiritual aspect of yourself. Depending on your beliefs, you might refer to the Christian section, the New Age bookshelf, or the Eastern mystic readings at your local bookstore or library. Illness can be an impetus for further spiritual development. Many people who receive comfort and guidance from a spiritual source are adamant about it saving their lives and making their illnesses bearable. (See chapter ten for more on spirituality.)
Reading Something Inspiring
Although part of coping with disabling sensitivities is acceptance, there also is always hope. There are quite a number of books written about people who found unexpected help—even miracles—in their darkest hours. These books provide inspiration, hope, and appreciation for the small miracles in your life. Perhaps some authors will help you to see your situation from a new vantage point. See Appendix C for a listing of books that offer positive, inspiring, and healing information, but do not resort to simplistic “think your way out of your problem” kinds of approaches.
Try to Salvage Time When Forced to Evacuate
Many people with sensitivities must vacate their premises periodically to avoid exposures from paving, pesticiding, construction, and other developments. In her book, The Women’s Retreat Book: A Guide to Restoring, Rediscovering, and Reawakening Your True Self—in a Moment, an Hour, a Day, or a Weekend, Louden (1992) provides suggestions that will allow you to turn desperate escapes into nurturing retreats. Some of her strategies include bringing special items with you that feel comforting, seeing the getaway as a spiritual retreat, devising rituals to do when you are alone, and viewing the exposure as a message (rather than as a threat) that it is time for you to have a retreat.
Have A Retreat Piggy Bank
My student Angie Fusco suggests having a retreat piggy bank and depositing change in it every time you have a debilitating thought about your situation. You can then use the money for a "retreat" even if that retreat is only to go out and buy yourself a new bottle of Rescue Remedy to help you cope. College students do versions of the loose change deposit to save for partying.