I'm a Groupie

In my quest for connection, I have started joining groups in hopes of meeting new people and getting involved with various communities of like-minded individuals. Besides chemical exposures, another risk is I'd be exposed to is stupidity which could raise my irritability to new heights.

My first foray was the local resistance group, a politically-motivated community who's goals are to change the world. A friend of mine suggested this group because they are so liberal, and liberals are often more aware of the world in which they live so they might be fragrance-free.  About thirty people convened. Many I had met in various situations around the area. Most seemed really nice. Some were intolerable.

My first encounter was a woman demanding my phone number. When I told her I didn't have one she exclaimed loudly and rudely, "Well then how do you expect anyone to be able to contact you in an emergency?" Whoa. She sounded exasperated at my non-compliance. An emergency? A little demanding for not knowing me at all. I volunteered my email and later discovered without my permission she added it to an email list. My email started getting flooded with political discussions. I was NOT happy.

In another conversation a social-butterflying name-dropping busy-body asked why I was there and I said I'm hoping to meet like-minded people and get involved. She asked where I lived. She started naming off names in hopes we had mutual friends. I didn't have the heart to tell her I am a reclusive people-hater who has no friends, but after the fifth name, she became indignant looking at me like I was a psychopath. Maybe she's right, but I still hadn't become irritable so I think her judgment was a little premature.

The sitting arrangement was around tables and as I sat facing the speakers, those on the opposite sides of the tables were facing me. I watched people roll their eyes during talks. It was very rude. Some talked incessantly to their friends across the table rather than graciously and respectfully listen. It was all I could do not to scream. One of the meeting facilitators is a retired teacher and he eventually got in front of everyone and told them to shut the fuck up while others are speaking. Ex-teachers hate talkers.

The final straw for me was the anti-gun protest school walkout. There were some rumors students in our area were thinking about walking out, but no one knew for sure. I suggested we need to be at the schools to support any student who walks out. Several people said, no, instead we should wear orange that day for support and if you want to walkout, then walk off your own job. Well, that's it for me. I realized this wasn't a resistance group but a senior citizen social.

The next group I joined was the new art association. The organizers spent the whole meeting demanding membership payment while emphasizing all the money they were spending that they didn't have. Hmmm...I gently tried to suggest NOT spending money and finding alternative ways to finance activities or finding freebies. They weren't having it. In between their money demands the women in charge kept excusing their lack of organization on how "absent-minded" "scatter-brained" "ditzy" and "confused" they were. It just seemed like a bad investment. Several of the women stunk to high heaven. Unfortunately, I came to the conclusion they were not my people.

I took a break from in-person group attempts and in my quest for health care information I started joining online support groups. I haven't had much luck in the past with support groups. My irritability gets the best of me and I have to un-join to survive the anger. I just don't do well with rude people. Unfortunately, these are groups centered around health conditions that cause irritability so other people aren't always in control. I have survived a month now without any online altercations. That's a record for me.

One new member the other day sent a post demanding to know if the group is "pushy" claiming other groups she has joined she has encountered pushy people. Well, OK. After a month I have not at all encountered pushy people on any of the groups. In fact quite the opposite. Most members are very helpful and supportive with loads of experiential information. On occasion someone will complain someone else is judging her lifestyle or diet ("her" is the operative word here), but for the most part everyone is well behaved. However, it's only been a month....

I'm still a member.

UPDATE: A week later I un-joined all the groups. No need to temp fate.

MCS World Disease Map

I just checked out this worldwide disease map for Multiple Chemical Sensitivity although I think I've seen it or one like it in the past. There are 743 people on it so far. You can place yourself on it (anonymously if you prefer), write a profile, and be available as an adviser to others if you wish. See it HERE

I'm still considering starting some kind of support group for my area. I'm not sure if it will get many members or if will help or effect change in anyway, but support is seriously needed.

Strategies for Despair

It's not easy when it feels like the world is attacking us. We feel lousy, we wonder how we will ever survive, and we question whether we really want to live a life when we feel so physically miserable, depressed, alone, and hopeless. Most of us have felt this way at some point in our chemical sensitivity journey. If we share some of the strategies that have gotten us through tough times, it may help those who are currently struggling. What do you do to keep your spirits up, your attitudes positive, and your hope alive?

Here are some things I have done:

Reduce the Load Depression is a symptom of chemical poisoning. The chemicals imbalance our brains making us feel irrational and hopeless. I did everything possible to reduce the chemical load in my system by avoiding chemicals and detoxing poisons. In reducing the load, I began to feel better.

Check Food Allergies Food allergies can do a number on your brain. When I gave up wheat and tomatoes, within a week I had this very bizarre feeling of contentment wash over me. It was astounding. The most common food allergies are: wheat, dairy, rice, soy, shellfish, peanuts, strawberries, and nightshades. Some of these allergens have delayed reactions so if you do an elimination test to determine your response, be sure to give each food at least a two-day reaction time. As I've mentioned before, caffeine is a mood killer for me: chocolate, coffee, tea.

Live in the Moment I tend to be a global thinker. This means I can take a moment in time expand it to include the world and visualize this moment extending far into future. I could see the horror of the rest of my life, never to improve, misery compounded, and getting worse for the next fifty years. Doom. Gloom. It helped to step back from all the negativity and ask every now and then, "How do I feel right now at this very moment?" Ninety-nine percent of the time, I felt fine and that made me feel better. I would relax. Even if I wasn't feeling physically great there were good things happening: food in the fridge, roof over my head, car still running, able to walk. Life changes. How many of us knew even ten years ago our lives would be like this? Who is to say they will be like this in the next twenty years? Ten years? Five years? What is that saying? The only thing constant is change. So the only thing that counts is right this second. Heck, a plane could hit my house in the next minute. Why worry too much about the future?

Find Perspective Global thinking has its advantages. Life is bigger than my meager existence.

The transition from living a normal life to accepting chemical sensitivity is the most difficult phase. We watch our neighbors doing things we wish we could do; we listen to our friends talk about their lives and we feel cheated. Envy is debilitating and creates a cycle of self-pity and despair. As our isolation grows, we become self-absorbed, seeing only our situation and forgetting there is a whole world full of suffering. Chemically sensitive people always compare themselves to their former lives, when in fact, they really should be comparing their situation within the bigger picture.  There are far more situations way worse than being chemically sensitive.

I read Holocaust survivor books. Compared to their stories, my life is exceptionally wonderful. I've never been tortured, starved, used for medical experiments, or watched my children slaughtered. I've never been forced to remove all my clothes and lay on top of a mountain of dead people waiting for my turn to be executed. So many of these Jewish people survived against all odds. When I read these stories I think what am I whining about? I've got it easy! Warning: Holocaust survivor stories will give you nightmares and imprint on your brain images you wish you could unread.

I just read a book on the Hatfield-McCoy Feud. I can't imagine living in constant fear that my neighbors are going to kill me or my children. I don't live in a country at war either, and I am not living with domestic violence.

Another option is to read about all the other health conditions far worse than ours and there are many.  I don't know how many times I've said I am thankful I don't have that.

OK, maybe I read too much, but it gives me perspective. I don't live alone in this world and all my experiences are relative to everyone else's. Even those who are experiencing situations you might consider way worse than yours, they are still coping and many of them continue to live with hope.  Be grateful for what you have. Count your blessings.

Practice The Secret If you don't know what this is, find a copy of the video in your local library. The book is by Rhonda Byrne and she narrates the video. I preferred the video for inspiration. It's all about being grateful for what you have, asking for what you want, and maintaining a positive attitude. It is said as soon as you know about it, suddenly you start meeting people or hearing about others who are doing it. It's true. All that gratitude is a bit overwhelming at first. It feels like you are lying. But the more you do it, the better it feels. (This is a rare case when more is better!)

Live in a Fantasy World  This is very much related to the Secret, a mix of meditation and visualization. Lie, lie, lie to your brain. Be positive. Imagine another life. Visualize wonderful things. This isn't "I wish I could..., I wish I was..." or you'll just start feeling sorry for yourself.  Immerse yourself in another life and dream.

Be an Activist When I first became chemically sensitive, I wanted to understand, then I wanted to share my understanding because I was convinced if people were educated, the world would change and the newly enlightened would stop poisoning me. Being busy made me feel like I was doing something positive for myself. A way to move forward. I researched, followed blogs, wrote articles, wrote letters to politicians, wrote letters to Oprah (HA! I did!), joined support groups, talked with anyone who would listen, and searched for people who shared my experiences. I became a home-bound activist. Some people start their own MCS blogs or websites so they can share all the information they've been gathering. Having a blog or website is very time consuming, but it does just that - it consumes you. Being busy made me feel productive. If you aren't part of the solution, you are part of the problem. I was determined to be part of the solution. Being bored gave me too much time to think about how miserable I felt.

Exercise in Fresh Air  This is really hard if you feel lousy, but if you have just a little energy exercise raises your endorphins and makes you feel good. I used to go to a deserted beach and walk barefoot in sand while breathing in the fresh air. I collected shells and looked at sea life. Other times I'd take myself to a large, deserted park during the week. Too tired to walk, I'd just sit in nature admiring the beauty of it all. I always made sure to find some place with the cleanest air possible so I could breathe deeply. This year I plan to have an ocean adventure at least once a month. Acknowledging the beauty in nature makes you appreciative of life.

Find Laughter  Make a point to watch television sitcoms, romantic comedy movies, and comedy routines. Read hilarious fiction, joke books, poetry, and short stories. Anything that will make you laugh out loud and feel good.  For instance, here is a comedian and her troupe of women I just discovered: Katie Goodman and Broad Comedy. I laughed so hard! Check it out:

http://www.youtube.com/watch?v=Sdn3O6aaMNc

http://www.youtube.com/watch?v=1CQg9f7z9eg

Sing  Find yourself a theme song and sing it all the time. Singing is incredibly therapeutic. I don't mean you need to be able to carry a tune or perform in front of people. Just sing. If you aren't ready to sing, hum or whistle and move up to singing when you're ready. Pick a song with a good, positive message that will lift your spirits and sing it whenever you need a lift. Or in the shower, in the garage, while laying in bed or while walking. My favorite theme song: Sunny Side to Every Situation, from the musical 42nd Street. (Stay tuned for lyrics.)

Plan an Adventure  Planning a trip is always a mental consumption and computers make planning easy. Information at our fingertips. I don't mean a safe little vacation that takes no preparation. I'm talking about an adventure! Hitchhike across the USA, safari in Africa, backpacking through jungles, cycle around the world, sail across an ocean. The planning alone would take your mind off everyday life. Pre-MCS, I traveled a lot. I know I can no longer get on a plane and if I think about it too much I feel pathetically sorry for myself.  But I think I figured out a way to get to Europe by driving! This gives me hope and makes me very excited!

Help Others This isn't always easy when we can't be around other people who might poison us.  Do things within your limits. Volunteer from home, contribute to support groups and blogs, make gifts for people, cook for people who can't cook for themselves, sew clothes for foster children or children in third world countries. Whatever your strengths or hobbies are, volunteer them. I used to do all kinds of things for my full-time working, fragrance-free friends. Once I cut a friend's squares for quilting; another I wrapped all her Christmas gifts for her, and another I packed her whole house for moving. I've always thought about volunteering for a help line. Many help lines you can do from your own phone. Helping others gives life a feeling of satisfaction and purpose.

Find Support Do you have family and/or friends who are understanding? Not everyone has support at home or at their jobs. Find people who will support you. Surround yourself with positive spirits. At least 15-17% of the population have multiple chemical sensitivity. That's a whole lot of us with a whole lot of understanding. Can't find support? Start your own support group online or in your own area.  Or become your own pen pal. Write letters to an imaginary friend and imagine how they would counsel you. Write back to yourself and send it in the mail. Send yourself some cards and flowers while you're at it! I always thought it would be fun to start a letter writing support group. Letter writing is a lost art. Wouldn't it be fun to get cards and letters in the mail telling us to keep up the fight?

These ideas won't work for everyone, but hopefully they will inspire you to find what motivates and makes you happy. 

Make a list of all the things that make you happy.

Brainstorm a list of all the activities you can do to stay positive.

Do you have strategies for despair you'd like to share?

All in the Family

I chose not to get married and have kids at a very early age because I expected I would live a single woman's life of adventure. I was told as a young girl I didn't NEED to get married because I had too much going for me. This was the most influential advice of my life and given to me by a woman in a very bad marriage. At the time I made the assumption this very sad wife must have needed to get married and I vowed I'd never be so needy.

As women, we have lived with the stigma of past social norms and traditional gender roles. Men provided and women managed the home. Women weren't expected to provide for themselves because it was thought they were incapable of independence. Although these ideas are slowly becoming outdated and archaic, so many women still marry for security rather than love.

When I became chemically sensitive, I temporarily lost my ability to support myself and I was forced to sacrifice much of my lifestyle to be healthy. It was frightening to feel so alone and vulnerable and it changed forever my perception of self-reliance and security. I now understand the feeling a woman might have to NEED to marry. How nice it would be to have a man to care for me and support me. No stress over not being able to work and pay the bills. Someone to shop for me. Someone to do home improvements and maybe a little car maintenance. I understand it now. Idealistically, I envision a house full of supportive family members lovingly adjusting their lifestyles to fit my health needs. My own built-in community! Who needs outsiders when I have a fragrance-free family? How perfect!

Well, life is rarely perfect. Some MCSers have supportive, caring relatives, but in reality most family members don't understand unless they have personal experience being chemically sensitive themselves. Relatives may (or may not!) be concerned at first and strive to assist, but after a while, the effort becomes too exhausting as they search for answers that aren't there. Eventually, they wonder if their spouse or sibling is mentally ill or making it all up. Families often express a certain entitlement to their chemically sensitive relatives. After all they have known this person all their lives so how can this be happening?  It doesn't make sense to them and the stress of constant support gets to be too much.

Many MCSers have expressed guilt. They aren't able work and they worry about not contributing. How will the family manage on a one-income household after years of double incomes? When will their husbands decide it's too much trouble? What will happen if their husbands decide to leave them? The medical bills are too expensive. The hopelessness of chronic illness is taxing. This wasn't the idea of marriage agreed upon at the wedding.

Chemically sensitive parents worry they can't be normal parents and provide a normal life for their children. They are unable to attend school events, classroom activities, parent conferences or sports events. No birthday parties. No vacations. No family reunions or holiday gatherings. No slumber parties or friends over for after school snacks. How do they shop for clothes and school supplies when they can't go near a mall? How does one keep a teenager from wearing scented products and perfumes?

Others experience their family's unsupportive, negative attitudes toward their health issues. Their grown children purposely wear scented products and accuse them of faking illness for attention. Their husbands tell them they are pretending to be sensitive only as a reason to quit a job. They assume their loved one has a secret agenda for being ill, and they are pretty sure it's to ruin their own self-centered lives.

A chemically-sensitive patient came into the medical offices where I was a medical assistant. He immediately became anaphylactic upon entering the waiting room and I escorted him out of the building back into fresh air. This was his first visit seeing this doctor who claimed to be an environmental specialist although was obviously incapable of providing a safe waiting room for his patients. In her husband's stead, the wife kept the appointment and I stood outside with him. Later I was told the wife informed the doctor she was concerned for her husband's mental health as he was afraid of leaving his house. She believed it had nothing to do with chemical sensitivity - he was making it all up so he wouldn't have to go outside. Listening only to the wife and not even meeting with the patient, the doctor diagnosed him with agoraphobia.  How betrayed the patient must have felt by his own wife's misunderstanding and lack of support.

My family members are preoccupied with self-indulgent addictions and I learned long ago expecting any kind of support is futile. Expectation breeds disappointment and that is worse than my self-imposed exile. What I don't understand is why no one else in my family is chemically sensitive? We have the same genes, same childhood, same background. I'm the only one who doesn't smoke, who doesn't drink, who doesn't do drugs, doesn't wear scented products, and who doesn't eat Hostess Twinkies for breakfast. Where did I go wrong and why are they off the hook? If I die before any of them, I guarantee I'm going to haunt them mercilessly!

Every now and then I briefly imagine what it would be like with a caring husband and loving children supporting me through tough times, but most of the time I think the dream is unrealistic. I have yet to meet a chemically sensitive person who has family support and/or doesn't feel guilt. I have enough to think about; I don't need the stress. I am thankful I live alone and I do have a lot going for me. I have control of my air space, what or who comes into the house, what I eat, how I spend my day, what I do, and most importantly, control over the detrimental attitudes I would be forced to endure from people who don't care and don't attempt to understand. And adventure is relative (pun could be intended). Being chemically sensitive is an adventure all by itself!

Who in your family is the most supportive?

Who is the least?

What is your best family story?