The best laid plans of mice, men and migraineurs

It's in the lap of the migraine furies and they haven't stood up yet!

So grateful just for today to practice a 12-step program in all my affairs, including my affair with chronic migraine and severe fragrance sensitivity (osmophobia).  The program helps me to accept the encroachment of chronic migraine on my life as it once was, continue doing my footwork toward health and recovery while freeing myself from resentment against the fortune that brought this illness to me now.

The 12-step program of recovery is replete with slogans to transmit spiritual information. The slogan tool is well adapted for we migraineurs who may find ourselves operating with diminished cognitive powers at any time due to neurological symptoms or from the side effects of migraine medications. All that's needed is to remember a few words, in order, like a mantra.

A most useful 12 step mantra is "One Day at a Time (ODAT)" or the variation, "Just For Today". Last night I used ODAT to invoke an attitude to avert toxic resentment toward a genetic neurological disease, over which my powers are few. Resentment of reality inevitably leads to spiritually bankrupcy, (as we learned on the bus). This morning I experience acceptance and equanimity along with the pain. I harbor no regret, blame or resentment but just a tad of melancholy.

I had formed a small  hope, tempered by my one-day-at-a-time attitude, that last night I would be able to attend the annual  Rex Foundation benefit at the Fillmore West. You see that for me, a Dyed in the wool dead head, semi-retired flower child native of San Francisco, the Rex Benefit is a dream come true. It's a opportunity to be seated comfortably, by ushers, cafe-style, beneath elegant crystal chandeliers in an historic venue with perfect sound and an uninterrupted view of the stage. No crowding or fighting for a spot but in company of several thousand of my closest friends, listening and dancing to my favorite music and all for a good cause! A literal hippy heaven!

Despite doing the self-care footwork all day I was forced to accept that I could not attend last nights benefit, Nightfall of Diamonds, because my migraine levels were too high.  I'd even skipped my a.m. yoga class in an attempt to save enough spoons to make it to the show. Recently my health has been much bolstered by daily (whenever possible) yoga practice as a preventive for migraine and tension headaches, but a 60 or 90 minute yoga class does use a lot of spoons, so I skipped it, rested, and ate well.

Despite my efforts, at about the time Rex Foundation volunteers began serving the wonderful pre-show party food at the Fillmore, I was surrendering to the fact that there was no way I could venture into the City, into a crowd, and tolerate, much less enjoy, all the sensory delights I would encounter there.

Now, on the morning after, I feel somewhat disappointed and curious about the music I missed, I am also grateful for the spiritual fortitude I gain from living in my unpredictable world of "one day at a time" (and sometimes "one minute at a time").

Any plans I make are subject to change with a moment's notice. In reality, everyone's plans are uncertain - are they not? After all, God laughs when humans plan.

Plans are extremely uncertain for the chronic migraineur and especially for the migraineur who is highly sensitive to fragrance. Plans are uncertain because access depends heavily on the behaviors of other people. Though I may feel healthy at a given time, my participation in an event can be completely blocked by someone else's decision to use or apply fragrance (parfum) or fragrance-containing products on their hair, skin or clothing. One spritz of perfume or hair spray requires little time and no thought, yet can render an event or location completely inaccessible me and others like me, can cause multiple days' illness. For a canary, it's pretty risky to make plans involving people.

The Fillmore is a pretty good venue for me because the ventilation system is excellent (although it can get a bit chilly directly under the vents).  Also, those of my culture and generation tend to avoid smells from laboratories (it's not the smell-it's the chemicals) but last night I didn't even get a chance to risk exposure to perfumes at what would have been the only late night musical event for me since last December. My migraine brain just wouldn't allow it.

The process of acceptance of that fact was a bit challenging spiritually, I fought reality for a while, but in the end "acceptance is the answer to all my problems today" (the Big Book of Alcoholics Anonymous).  Just for today I chose to take care of myself first and to accept the path laid out for me, one day at a time.

What seems like misfortune subjectively, is objectively speaking, just fortune a fact, ineffable though it may be to me. Fighting facts using magical wishful thinking poisons me on the inside, much worse than the perfume poisons me from the outside.

"C'est la vie" say the old folks, the migraineurs, the spoonies and those with disabilities and lacking access. You never can tell.  One day at a time.

Suki

Talking about Perfume at Work

A blog featured recently on Migraine.com asked readers:

 Do you have a coworker who insists on wearing perfume even though it triggers your migraine? How can we communicate with these people so they understand the impact their actions have on our health without going to war with them?

I began to comment and realized I could write a book on the topic of communicating with co-workers about perfume as a migraine trigger. 

Take what you can digest and leave the rest. 

I am a person living with migraine disease and highly sensitive to "fragrance": a chemical concoction ubiquitous in the personal care, cosmetic and housekeeping products sold in stores today.  

Fragrance blocks my access to work, home, family, community, recreation, and travel. I've made acquaintance with others who experience the same barriers; people living with Multiple Chemical Sensitivity, allergies and other diseases.

What Everyone Should Know about Migraine

There are many reputable resources for more information about migraine. 

In a nutshell, migraine is an incurable, disabling neurological disease that interferes with one or more basic life functions depending on the symptoms and severity of the disease in the individual.  

The nervous system of a person with migraine disease tends to be sensitive in varying degrees to various forms of sensory input; e.g., light, sounds, smells, touch and/or movement. (I have been overwhelmed by the input from my "sixth sense", but that's another blog altogether.) 

Degree and type of sensitivity may change over time. When volatile fragrance fumes reach the trigeminal nerve endings in my nasal passage I experience the following: 

• an immediate or delayed migraine episode; or, in the case of chronic migraine, a flare-up;
• excruciating pain; 
• additional symptoms of brain fog, confusion, aphasia, fatigue, blurred or double vision, and anxiety;
• strong aversion to the sensory experience (duh)!

My neurologist calls this "Sensory Disorder of Smell" or "Osmophobia".

Triggers

One needs not a medical degree to know that the identification and avoidance of triggers are a primary means of managing migraine.  Good luck with that if you have the same trigger as I. At present, the only certain method I know of to avoid fragrance is total isolation from people who are not completely fragrance-free. People are the primary carriers of fragrance, although some folks douse their pets in it also.

Ineffective Accommodation for Fragrance Sensitivity

In lieu of a fragrance-free workplace policy many employers choose to "allow" an individual with sensitivity to approach co-workers, explain that their fragrance causes a health problem, and request "consideration".  In my opinion, except in rare circumstances, communicating directly with co-workers about one's sensitivity to fragrances is inadvisable, ineffective and if it becomes your only option in order to work, is a potential violation of your civil rights. Any employer or employee considering this approach should obtain legal consultation.

Many factors combine to render this "accommodation" ineffective.  this post primarily reflects the problems with "communicating" directly with co-workers about it. . 

  Alienation/Stigma/Harassment

• Personal odor is a touchy subject. Most people in our culture consider a discussion of personal care products and odor offensive. Frankly, most folks are personally insulted when told that their "signature scent" or their deodorant is making you sick. It's a good way to lose rapport with colleagues. Most supervisors have realistic fears of discussing the topic.
• Fragrance chemicals are mixed to be as addictive as possible. Chronic perfume users are known to become angry and resentful toward anyone coming between them and their drug of choice. In many settings the consensus is that wearing fragrance is a privately held right of the individual.  Remember the smokers' rights movement? 
• It's possible to offend and alienate people without speaking. A co-worker once complained to management that I "sniffed" him. I had been (discreetly I thought) assessing whether I could safely board an elevator car with him. A friend of mine     received a reprimand after instinctively holding her nose when a colleague entered the room wearing a cloud of cologne. This was after management denied her request to wear a mask, (another situation clearly calling for legal advice).

• It is a huge burden on the employee to "investigate" the source of toxic fragrance in an environment, and then address it with who they think is the offender. They're asked to handle a sensitive task under handicapping conditions. Sounds like the opposite of accommodation doesn't it? Sniffing out a "perfumer" causes me immediate head pain and problems seeing, thinking and speaking. My limbic system goes on high alert. Who can communicate well under such conditions?
• How does one maintain a relationship with the cause of one's pain?  From my perspective, perfume and scented aftershave lotion transform "nice" people into aggressive attackers who run skewers through my nasal passage to my brain. Naturally, I get an angry impulse to hit them or run, or both!  I have no appropriate words to describe my feelings for those who continue to wear perfume in full knowledge that it harms the health of others. 
• Singling out the sensitive individual to co-workers too often results in harassment. There are reports of co-workers spraying perfume or installing "plug-in" air fresheners or fragrance diffusers near the sensitive person's cubicle. They may gossip about, ask embarrassing questions of and present “medical” opinions to the individual, usually in public. In one news story a woman reported a colleague wore perfume to eliminate her as competition for a promotion.

Ask Nicely  

In 2004 my request for a fragrance-free workplace was denied, ostensibly on the basis that my employer would be unduly burdened to implement an office-wide policy. Instead I was given the above-described "accommodation". I was encouraged to "politely" explain my problem and ask co-workers to help me. Unfortunately I agreed to this arrangement and suffered for many year.  I finally realized that it wasn't an appropriate option and asked that my employer provide me with a safe (fragrance-free) work station and/or effective support for telecommuting.

Complain?

In 2010 I finally filed an EEO complaint of discrimination on the basis of denial of a reasonable and effective accommodation. I found an excellent attorney specializing in EEO in my sector, and thoroughly educated her on my health issue. Although the judge appeared inclined to decide in my favor, I did not have the health or time to go through the entire hearing process.  I am prohibited from speaking about the outcome of my case, but I will say that I certainly did get better results from filing the complaint than when I asked "nicely" for my statutory rights under the Americans with Disabilities Act. 

Too little too late

June 2012 I was granted an enclosed, fragrance-free work station and had full capacity to telecommute as much as I needed. By then, the migraine disease had transformed from episodic to chronic. I also had severe, chronic anxiety. The stigma of my illness was now entrenched in the office culture and internalized in me. I became more isolated than ever and was passed over for advancement opportunities. Eleven months later my neurologist put me on medical leave for a minimum of a year. 

Although not a source of legal advice, the Federally-funded Job Accommodation Network has resources to assist in identifying job accommodations for those with fragrance sensitivity and also migraine disease. 

Bye for now,

Suki


P.S. Please (I'm asking nicely this time) if you have used perfume or other products with fragrance in the past, it is now time to "fragrance-free" yourself and all those who share your airspace. If you need resources for this, just ask.

Chronic Third Space

Since I finally conceded the battle to chronic migraine and stopped working, I've spent many bedridden hours hangin' online with my new peeps: #spoonies #migraineurs #canaries #chronic #invisibledisabilities ...#whatshallwecallpain?

A predominant theme among us is resentment, fury, and just plain pissed-offed-ness at those "non-spoonies" who dare to offer us unsolicited opinions or advice. 

To this day I harbor resentment against a former co-worker who dared (n 2005) to offer me a cure for my recently diagnosed, incurable neurological disease, called migraine, triggered by fragrance.  I had requested a fragrance-free work space as a work accommodation. Subsequently the entire staff of our office learned about my medical condition (not to worry, a post is forthcoming on the legal aspects of this tale).  A co-worker approached me in a shared area of the office and announced, in her typically insipid tone of voice, "I used to get really bad migraines but  I changed my diet and they stopped” all the while glancing askance at my generous figure. 

Not only did this person ignorantly share her unsolicited experience, she never, over the course of the following 8 years, stopped wearing perfume in the office. Avoidance of perfume was a simple remedy that my doctors had confirmed would be certain to improve not only my ability to work but also my overall health. Her signature scent was reminiscent of Easy-Off oven cleaner and felt like a barbecue skewer through the eyeball, yet she dared to offer medical advice?

Darn, now I've digressed into venomous, fragrance-free ranting - again!  I’m certain my gracious readers will not interpret this as evidence that I am an irrational person much in need of UNSOLICITED MENTAL HEALTH/EMOTIONAL WELLNESS ADVICE. They wouldn't even think of advising me to "calm down" or "breathe", because they can empathize with the impossibility of trying to calm down while mindfully inhaling the chemical equivalent of "RAID" for humans?

Let us leave aside our reasoned response demonstrating the total ignorance behind my co-worker's comment. 

Fast forward to the me/here/now gratefully discovering I am not alone in resenting recommendations for healing; and concurrently finding myself the mother of (gasp!) TWO WHO WOULD GIVE HEALTH RECOMMENDATIONS.

My daughter and son-in-law are wellness professionals, each in several different disciplines. I sure as heck want my kids to succeed in their line of work because I may need them to support me in my not-so-old age if I don't get back to work soon. 

Holy Triptans Migrainemama!  We've been propelled into ........ Third Space! 

I'm a radical believer in my own ersatz understanding of third space. It is a holding place where the subjective experiences  of both the #spoonies and the #healers co-participate in reality.  We're not talking parallel universes here; one doesn’t condescend to “understand how the other can think that way", or, “agree to disagree”. Those acts merely subsume one subjective reality to the other while masquerading as "more real" or even, God forbid, "objective".  Third space is a third subjective reality wherein lie the first two realities, participating in an assumed objective reality- sacred by virtue of inclusivity.

What could result from these worlds colluding ? 

 As Scheherazade would say, "more will be revealed". (But I'm not letting go of that resentment until hell freezes over).