Here I go...

Walking and Talking Across Spain - long distance walking chelates the chemicals that trigger my Multiple Chemical Sensitivities

Sunday, March 19, 2017

Do You Wear Fragrance to Church? Please Don't . . . and Here Is Why.

Last night I attended a church social event. 
Today I'm feeling the results.

Earlier in the week I attended the Temple.
I was there approximately 3 hours.
On the drive home, I suffered from migraine, brain fog, and violent diarrhea.
It was the result of a reaction to perfume.
People are not supposed to wear perfume to the Temple, but they do.

There are days like today when I feel hopeless.

I have tried attending church before. 
It usually doesn't last long - the desire to attend is often outweighed by the symptoms I suffer as a result.

I should have known better, both times, but there are days when I just REALLY want to feel like a normal person and socialize.  However, I should know, after all these years, it's impossible.  I have Multiple Chemical Sensitivities (MCS)  -  and as long as people insist on wearing dangerous chemicals, I can not be around them and expect to remain healthy.

For a person with MCS, exposure to chemical fragrance causes a multitude of symptoms, most of which occur within minutes. 
It is not uncommon for MCS sufferers can have the following reactions:
  • Headaches
  • Irritated mucous membranes in eyes, nose, throat
  • Supersensitivity to smell, sound, light, and touch
  • Difficulty breathing
  • Slurred speech
  • Mood Swings
  • Hyperactivity
  • Dizziness
  • Sweating
  • Palpitations
  • Muscle Pain
  • Diarrhea
  • Nausea
  • Numbness
  • Skin Rash
  • Loss of Mental Capacity
  • Confusion
  • Disorientation
  • Lack of coordination
  • Exhaustion
  • Decreased verbal fluency
  • Problems with cognitive flexibility, calculation, short term memory, attention or concentration, often referred to as "brain fog."
More specifically, symptoms might manifest as
  • Nausea and wheezing when exposed to perfume, fragranced washing powder, fragranced lotion, shampoo fragrances, or air fresheners.
  • Uncontrollable shaking or change in personality when near fragranced trash can liners or when using the telephone covered with residual perfume from someone's hands.
  • Anger or crying when exposed to the print of newspapers, books or magazines.
  • Severe rashes and skin outbreaks, or muscle pain after contact with soap or household cleaners.
  • Becoming disorientated and losing coordination after taking a shower, using a computer, eating food with gluten or strong spices.
The after-effects of chemical exposure can last hours, days or weeks. The effects of exposure are often cumulative, so a high exposure one day can lead to worse chemical intolerance the following week. Because of the escalating effects on health, some individuals do not appear to react at the time of exposure, but can suffer symptoms hours or days later.

Continually reacting to substances commonly results in chronic fatigue, loss of mental capacity and a decline in general health. Many MCS sufferers also become hypersensitive to a vast range of foods, which is why I shouldn't have eaten that cake and those brownies last night!  I knew better!
Avoidance of further chemical exposure is vital to improving levels of sensitivity and general health.
For myself, symptoms can be mild or severe, depending on the type of exposure.
The Brain Fog

For me, one of the most frustrating symptoms of Multiple Chemical Sensitivities can be the brain fog.
Brain fog is an inability to really punch through, says Mady Hornig, MD, associate professor of epidemiology at Columbia University Medical Center in New York City. It's a vague sense of what you're trying to retrieve, but you can't focus in on it and the effort to harness the thought can be as draining as physical activity. 
Brain fog is a commonly used phrase that sums up feelings of confusion, forgetfulness, and lack of focus and mental clarity. And what makes brain fog most frustrating is that it doesn't wait until the day after to begin. It occurs instantly upon exposure to the trigger substance, at least for me.

(Trigger substances are the particular chemicals that cause a person's MCS symptoms to set in, sometimes immediately, sometimes after a few hours.)

So last night, there I sat at a table full of very friendly faces, all with their various perfumes, scented laundry detergents, scented hand lotions, scented shampoo and conditioners, in a small room of about 10 such tables, and people started asking questions.  What's your name? Where do you live? How many children do you have? What are your children's names?  Most of those answers just roll off the tongue.

However, then come the dreaded "number questions!"  How long have you been a member of this church?  How many years have you been single? How many years ago did you work for USFWS? What year did you move to Portland? What year did you start walking the Camino? How long is the Camino Santiago? What is your son's birth date? 

And though you KNOW you KNOW the answer . . . your brain begins functioning the way your computer does when you see that dreaded "circle of doom" that means it is searching, searching, but can't connect or find the answer. Your brain just freezes up and in creeps the brain fog.

You wait.
And wait...
And wait ...
And wait . . . 
And sometimes you get so frustrated at waiting for the answer to come, that you just take a guess. The problem with this is, after a while, your answers don't add up, and people think you're either lying or crazy. 

Remember the last time you tried to work with a horrible flu? Brain fog is like that, except it persists. It can last for hours, days, or even weeks. But eventually, your head clears up and you know the answers to those questions like the back of your hand.

This is the difference between brain fog and dementia, says rheumatologist Robert Lahita, MD, PhD, chairman of medicine at Newark Beth Israel Medical Center and professor of medicine at Rutgers University in New Jersey.  While brain fog may make you forget where you parked your car, dementia would make it impossible for you to get there in the first place.

Various things can cause brain fog, from hormones, medications, antibiotics, to lack of sleep, stress, or toxins in your food. For the MCS patient, it is usually CHEMICAL FRAGRANCES. (By the way, people often ask me if I can't wear essential oils, and the answer is NO!  Because even though essential oils may be labeled "organic," they are more often than not chemically processed.)

From the autoimmune to the neurological, brain fog crops up in people with a wide range of diseases, like fibromyalgia, lupus, multiple sclerosis, and more. If you've been battling prolonged brain fog and it's not related to your sleep schedule or your last feeding frenzy, talk to your doctor about what other symptoms you might have overlooked, like joint or muscle pain, numbness or tingling, headaches, and loss of coordination.

Chronic fatigue syndrome—now called myalgic encephalomyelitis, so we'll go with ME/CFS—is a highly misunderstood condition, but one in which people often complain of feelings of brain fog. (In people receiving chemotherapy, it's referred to as "chemo brain.")Earlier this year, a study by Dr. Hornig found differences in the brain fluid of people with ME/CFS that might help explain the mental cloudiness so common in the disease. Immune-system proteins called cytokines were reduced in ME/CFS patients, she says, "almost like the immune system has exhausted itself." Science isn't totally clear on why these changes might lead to brain fog, but Hornig, also the director of translational research at the Center for Infection and Immunity at Columbia's Mailman School of Public Health, says there are receptors in the brain for the cytokines, which are closely related to some of the receptors for hormones and other brain chemicals. This complex interplay between all of our wiring up there could be making ME/CFS patients foggy, she says."  (from PREVENTION MAGAZINE)

Brain fog symptoms usually include:

  • low energy or fatigue (including chronic fatigue syndrome)
  • irritability
  • trouble concentrating
  • headaches
  • forgetfulness and trouble remembering information
  • low motivation, feeling hopeless or mildly depressed
  • anxiety
  • confusion
  • trouble sleeping through the night or insomnia

Is it REAL?

So, is MCS real or imagined?

The author of a website called QuackWatch states, "Well-designed investigations suggest that most of them (people with MCS) have a psychosomatic disorder in which they develop multiple symptoms in response to stress."  

People who say this are simply ignorant, and I'd love to have them walk in my shoes for a week. There's not much stress in attending a water-aerobics class... that is until you have to leave because someone in the laundry facility is using fragranced fabric softener and the smell is wafting over the pool area.  There's not much stress in attending a church ice cream social, or a birthday party, or dinner at your favorite restaurant, unless otherwise well-meaning people slathered in fragrance want to shake your hand.  

Is it "all in my head?"

Yes, most definitely. 
But it's still very real.

My specialist believes MCS is the result of an overactive Amygdala, the reptilian part of our brain that saves us from being eaten by Tyrannosaurus Rex! It is a broken immune system which has become overactive after continual exposure to dangerous chemicals. (In my case, most like a result of growing up on a farm where we used such chemicals in ignorance and then working on an Oncology ward in a hospital where I was constantly exposed to the chemotherapy.)

This broken and super-sensitive Amygdala causes a fight or flight reaction, which can result in the symptoms listed above, but also in anger, shaking, crying, or instant change in personality.  This reaction kicks in when a person with MCS is unable to get to safety and breathe clean air. 

My specialist explained it like this:

You're daydreaming as you walk down a mountain trail, having a wonderful time. You come around a bend, and suddenly there is a HUGE rattlesnake in the trail and you nearly step on it!  You JUMP backwards!  Your sympathetic nervous system sends out impulses to glands and muscles and tells the adrenal medulla to release adrenaline, noradrenaline, cortisol, and other hormones to the bloodstream. These "stress hormones" cause instant changes in the body, including an increase in heart rate and blood pressure. They give you the strength and agility to get the hell out of the area FAST!

Then you realize it was only a stick across the trail.

It doesn't matter.
The hormones have been released and your nervous system is reacting.

In a normal person, after such an event, the body quickly returns to rest.

However, in a person with MCS, the immune system refuses to turn off.
The reaction is more like a snowball; it gets bigger, and Bigger, and BIGGER! And quite suddenly, the body goes into Fight or Flight.

When I get a few molecules of perfume up my nose, my body reacts as though I almost stepped on that rattlesnake! My cheeks get very red, my brain fogs up, and FEAR sets in along with the tightness in chest and pounding heart. I can't concentrate. I have one focus, and that is on getting OUT of the area.  

For me, the fragrance on your body is a rattlesnake and my brain believes it's going to kill me, and therefore it REACTS, instantly and sometimes violently. I'll do anything I can to get out of the area, which my brain believes is dangerous. 

If for some reason retreat is impossible, watch out! I can become very confrontational. My response may seem aggressive, inappropriate, or just plain weird to people who don't know what's going on inside my brain and body.

For people who know me and understand what's going on, it's not so bad. They just back off and let me work it out. But in a room full of strangers, that's not quite so easy. People react to my reaction, thinking I've got a screw loose. And that is one of the saddest consequences of having MCS. . .  the complete loss of a social life and the support of a caring community. 

MCS is a recognized Disability by the Federal Government.  

I have met more and more people who are unable to attend social events, including church, due to MCS.  We are trapped at home, with no support system. A few hours at church can lead to 3-4 days of flu-like symptoms. It's just not worth it in the end.

A lot of people do NOT wear fragrance, but can pass on the molecules of scent between a scented person and an MCS sufferer without even knowing it. Like the sweet lady who got a hug from a perfumed person last night, then turned to hug me, saying, "I don't have on perfume."  Oh but she did... the fragrance from the person she had just hugged covered the front of her and was transferred to me.

Even if people don't touch me, if they are in the room, the perfume diffuses and soon fills the entire space.  To get a clear idea of what diffusion means, take a clean glass of water and drop in one drop of food coloring. Watch it slowly disperse into the clean water. This is what happens to the air in a room full of fragranced people. Their fragrance slowly permeates all of the clean air. It's not magic, it's science.

You're Wearing Just a Little?

For those of you who object to not wearing fragrance to church, I would respectfully ask you to please prayerfully consider what is most important, as you reach to spray yourself with scent. 

If I could not walk, would you take away my wheelchair ramp? 

If could not see, would you take away my seeing-eye dog?

Then why do you take away my clean air?

And for those who say, "I just put on a LITTLE bit of perfume, " if I had a fatal allergy to peanuts, would you stick even one peanut in the salad you're taking to the church dinner?

And also think about this.
Is it more important to you that you wear the latest fragrance? 
Or is it more important that people with disabilities are able to attend services? 

I have no choice.

You do.

Please make church a safe space for all people.
I'd really love to attend.
But there are days like today it just doesn't feel like it's worth the effort.
I'd rather stay home where the air is clean and feel healthy.
I think God probably understands.

1 comment:

  1. I get wheezy from scented products (just uncomfortable, not threatening). People don't realize a large number of unscented products even have scent to them, it's just a "neutral chemical smell" one.


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