A New Era
Delirious on Day 4 (of #migraine)
Migraine calendars are absurd. There's an assumption of discrete time measurement; i.e., when it began, when it ended. Also an assumption of discrete causality; i.e., what worked for relief, what was the trigger.
The ordinary parts of my brain don't seem to function well enough to notice and record all of these factors when I'm in migraine mode. That's all too linear.
My brain was never that detail oriented to begin with and now it's quite hopeless for me to maintain that level of analytical documentation. So arbitrary really....when it comes to thoughts, brain waves, behavior of matter and energy....
I have to admit that getting off a paper migraine calendar and onto an app has helped a bit.
It's a day when I must be somewhere at a certain time this morning, unfortunately it will not be to earn money. The blog will continue. There will be less spellcheck and more truth.
My life flashes before my eyes often, little segments of it. This morning it was Faye's first communion cerca 1987. Silly because none of us are Catholic but during the first grade I had her in the Notre Dames des Victoires elementary school in San Francisco so she did the ceremony with the other children.
In my life review flash of this a.m. I was seeing the event through the eyes of my dad and Faye's paternal grandparents who came to the ceremony and reception. They were about the age I am now. I was 28 with a 6 year old daughter and no husband.
Seeing things now through a different level magnification, the same scene in the past through a different lens. Not a completely different view but with an added layer of subjectivity thus expanding a bit toward the objective.
When I'm an angel what will the viewing mechanism show?
Friday, June 24, 2016
Thursday, June 23, 2016
DENIAL on DAY 3?
When I load my Migraine App "Migraine Buddy" I see "Denial on Day 3" and have no idea how it got there. Did the app makers put it there? Did I write it in a fog of denial?
I've begun to compose a new one each day.
Yesterday was Doggedness on Day 2
Slug down the triptan and trudge through the motions of a basic day. A basic day for a 57 year old woman with Intercranial Hypertension and Chronic Migraine is very very basic.
Today is Day 3 and the triptan hasn't worn off yet so feels almost like a typical morning, at least there is no pain and I could fathom the idea of an errand involving driving.
The problem is that there are so many errands left undone and the executive function of my brain is a bit fuzzy, so what errand should I do? Perhaps I should have planned last night, just IN CASE I felt almost normal this morning.
But I gave up planning and expectations.
Meanwhile the cranio-sacral fluid is going swish, swish in my ears and my vision is blurry. Oh right, I have an appointment with the opthamologist tomorrow to check whether my optic nerve is being affected by the pressure of the spinal fluid.
I'd better save some spoons for a drive to Oakland in the morning.
Bye for now
When I load my Migraine App "Migraine Buddy" I see "Denial on Day 3" and have no idea how it got there. Did the app makers put it there? Did I write it in a fog of denial?
I've begun to compose a new one each day.
Yesterday was Doggedness on Day 2
Slug down the triptan and trudge through the motions of a basic day. A basic day for a 57 year old woman with Intercranial Hypertension and Chronic Migraine is very very basic.
Today is Day 3 and the triptan hasn't worn off yet so feels almost like a typical morning, at least there is no pain and I could fathom the idea of an errand involving driving.
The problem is that there are so many errands left undone and the executive function of my brain is a bit fuzzy, so what errand should I do? Perhaps I should have planned last night, just IN CASE I felt almost normal this morning.
But I gave up planning and expectations.
Meanwhile the cranio-sacral fluid is going swish, swish in my ears and my vision is blurry. Oh right, I have an appointment with the opthamologist tomorrow to check whether my optic nerve is being affected by the pressure of the spinal fluid.
I'd better save some spoons for a drive to Oakland in the morning.
Bye for now
Monday, March 23, 2015
Well, Well, Well ...: Healing Begins with Tenderness
Well, Well, Well ...: Healing Begins with Tenderness: We want to feel better. In fact, we want to feel amazing and free and enthused. Jazzed. Free. Whole. We want to dro...
Sunday, February 15, 2015
Sunday, February 9, 2014
Migraine and Osmophobia - It's the Chemicals Silly!
Diagnosis: Osmophobia
According to my neurologist, I have:
Diagnosis: Osmophobia
- Migraine 346.00
- Osmophobia (sensory disorder of smell) 781.1
Unfortunately, avoiding triggers in a world full of fragrance is well nigh impossible for the osmophobe.
Migraine is a hereditary disease sometimes accompanied by osmophobia. In fact, my mother used to get migraines from perfume. In today's toxic world scent-triggered migraine seems to have become a disease of civilization; a small part of a vast, preventable public health problem.
Osmophobia can manifest as an "extreme sensitivity to odors" during the headache phase.
Yes, I do exhibit high sensitivity to odors during a migraine. I also experience an extreme sensitivity to fragrance 100% of the time. Migraine heightens my experience of all smells, pleasant or unpleasant, but non-petroleum-based odors do not trigger migraine, fragrance does.
"Fragrance" refers specifically to a mix of undisclosed, unregulated petrochemicals in volatile form found in perfume and in many consumer products.
Fragrance fumes ignite multiple debilitating migraine symptoms in my body, upon contact with my olfactory nerve. Symptoms include, but are not limited to: visual disturbances, double or cloudy vision, tunnel vision, brain fog, confusion, fatigue, loss of memory, mood swings, dizziness, dysphagia, vertigo, nausea, and of course, PAIN in the head, eyes and neck.
That I am very sensitive to strong odors is an understatement. Fumes from the neighbor's dryer vent feel like chemical warfare (think someone spraying RAID Pesticide spray into your face). Proximity to someone who has applied Old Spice After Shave lotion feels like sticking my head in an oven full of EASY OFF oven cleaner.
It's not the smell. It's the chemicals!
Osmophobia can be described as "smelling things that aren't there" during the aura phase of a migraine episode.
I do NOT "smell things that aren't there". Quite the opposite; I possess a heightened ability to detect what IS THERE; that is, volatile chemicals, many of which have been scientifically proven to be neurotoxic, carcinogenic and otherwise hazardous.
"Phobia" implies unreasonable fear. On the contrary, fear of fragrance is highly reasonable because fragrance chemicals can exacerbate and/or cause diseases in any of us; even in those who enjoy the smell of chemically scented products.
We are not alone
What a relief to find an online community of folks living with Multiple Chemical Sensitivity (MCS); Environmental Illness (EI); and/or Chemical Injury (CI); sometimes referred to as Canaries (whose coal mine is modern civilization).
I am humbled by the songs of isolation and discrimination sung by Canaries around the world. Many struggle alone and impoverished to find safe environments in which to work, live or obtain medical treatment or education. Along the way they meet harassment, ridicule and grow increasingly sensitized from repeated exposure to fumes.
- Women's Voices for the Earth,
- Campaign for Safe Cosmetics,
- Environmental Working Group, and
- Safer Chemicals, Healthy Families .
Educate and Protect Yourself
I cringe when favorite #spoonie or #migraine bloggers post about pedicures, bubble baths, salon appointments or aromatherapy used as a form of self-care. In all likelihood these "treats" are full of poison. Even products labeled, "unscented", "natural", "organic" tend to have chemical ingredients. Although the smell may not "bother" you or cause an immediate reaction, they are nonetheless hazardous to your health. Some essential oils are created using petrochemical solvents and are not safe.
You may not have osmophobia or MCS "YET"*. But the toxic, secret ingredients of "fragrance" include undisclosed and under regulated sensitizers that can begin to affect anyone, any time.
 |
| Mogridge- Senses under assault |
*Y.E.T. = You're Eligible Too
Monday, February 3, 2014
The Accidental Activist Gets In Your Face
You may have noticed the fashion statement in my meme; I've just learned that this is called a Melfie (selfie wearing mask):
Linda Sepp recently blogged about wearing a mask and underscored several other great blogs on the wearing of masks in public so I decided to chime in.....wearing my activist mask, er hat.
First, I empathize deeply with Colleen and anyone with environmental sensitivities who avoids wearing a mask in public from fear of "SCENTUAL ASSAULT". Intentionally spraying perfume at a person with chemical sensitivities is a form of hate crime or at the very least, harassment. Believe it or not, it happens A LOT, especially in the workplace. This will be evident from a cursory review of the case history of EEOC complaints re: discrimination against the environmentally sensitive.
Reading Michelina's experience of public discrimination and harassment while wearing a mask raises empathy and then a bit of gratitude that I live in Albany, California (next door to Berkeley). Berkeley is the birthplace and heartland of the Movement for Independent Living in the U.S. The National Center for Independent Living is working on addressing access for those with chemical sensitivities.
Check out their section on environmental health barriers.
In the 2010 paper:
Of the World But Not In It: Barriers to Community Access and Education for Persons with Environmental Sensitivities by Pamela Reed Gibson: the researcher found that people living with environmental sensitivities in Berkeley experience a bit more acceptance, access and inclusion than elsewhere.
(I cannot find a link to the entire text of this paper but I'll email it to you if you send me your address).
The following quote from that same paper explains why I rejoice that I am well enough to go in public and to wear my mask there (at least for short periods).
Having gone past the initial self-consciousness wearing a mask (it's been about 4 years now), I've grown accustomed to and learned from the experience. When people stare, whisper or glance away so I won't see them looking, I get a tiny taste of the life experience of a person with a disfiguring disability .....helps build empathy and understanding. Usually I don't make eye contact right away so they can have a chance to check it out. When I do make eye contact many folks can tell that I'm smiling without seeing my mouth, and they smile right back! Most of them, except for the woman in the elevator in Nevada who asked "DO YOU HAVE A DISEASE?".
Another gratitude, the I CAN BREATHE honeycomb mask with carbon filter works well for me. I have the lace ones in most colors: from my photos you can see that the multi-colored is my favorite, it just goes with all my outfits and decor. I have the sport valve filters for yoga class or walking and I just ordered a bamboo activated-charcoal version.
I usually try to match my mask of the day to my other migraine head-gear (hat, head-wrap and/or glasses), but a full-blown non-responsive migraine attack trumps fashion, as you can see from this portrayal of me on my way to access medical services.
If I'm minding my own business somewhere that is fragrance-free and someone comes along and sits near me emitting "toxic fumes" from their person or clothing I must leave of course, but first, I whip out and don my very clinical-looking white honeycomb mask. I've found that it's a lot more "in your face" than the pretty ones (because it evokes fear of contagion). Sometimes I explain to the "fumer" the reason that I'm leaving; (sometimes I don't for obvious safety reasons). Once a french tourist to Berkeley had her husband threaten me physically after I informed her she polluted a cafe with her perfume. I told them, "Welcome to Berkeley". That people become violent over their use of perfume tells me that the fragrance chemicals are addictive, the chemical industry designs them that way.
I'm currently in the market for a serious respirator mask to have/maintain in case of emergency; such as, a traffic jam on a bridge, being held hostage in a laundromat, or in the event of our rather frequent Richmond refinery "incidents". I'll have to re-read the mask resources on Linda's blog "Need Protection" to find the right one.
Many folks come right out and tell me they covet my mask (little girls prefer the bright purple), so I refer them to I Can Breathe.com! Others stare at me and seem afraid that I have something contagious. Some of these (mostly children) ask "why are you wearing that?" Then I get to explain about dangers of perfumes and after-shave.
I'm about to begin carrying and passing out the "refrigerator cards" created by Fragrance Stinks. Maybe someone creative out there can figure out how to add the words: "Perfume is Pollution" to the mask itself, (kind of like a sandwich board) so people will get the message while they're staring at the mask.
A note of caution. As my teacher Gurdjieff would say (through the mouth of Mulla Nassr Eddin) "Every stick has two ends". Wearing a mask is a public reminder that we SHARE THE AIR; however, we don't want employers and others to assume that permission to wear a mask to work or school is an effective accommodation. A mask is not a panacea and should not be used as an excuse to maintain the status quo. More later on the effectiveness of the mask for work. Some of my struggles for work accommodation are described in a past blog.
Another quote from Pamela Gibson Reed:
Linda Sepp recently blogged about wearing a mask and underscored several other great blogs on the wearing of masks in public so I decided to chime in.....wearing my activist mask, er hat.
First, I empathize deeply with Colleen and anyone with environmental sensitivities who avoids wearing a mask in public from fear of "SCENTUAL ASSAULT". Intentionally spraying perfume at a person with chemical sensitivities is a form of hate crime or at the very least, harassment. Believe it or not, it happens A LOT, especially in the workplace. This will be evident from a cursory review of the case history of EEOC complaints re: discrimination against the environmentally sensitive.
Reading Michelina's experience of public discrimination and harassment while wearing a mask raises empathy and then a bit of gratitude that I live in Albany, California (next door to Berkeley). Berkeley is the birthplace and heartland of the Movement for Independent Living in the U.S. The National Center for Independent Living is working on addressing access for those with chemical sensitivities.
Check out their section on environmental health barriers.
In the 2010 paper:
Of the World But Not In It: Barriers to Community Access and Education for Persons with Environmental Sensitivities by Pamela Reed Gibson: the researcher found that people living with environmental sensitivities in Berkeley experience a bit more acceptance, access and inclusion than elsewhere.
(I cannot find a link to the entire text of this paper but I'll email it to you if you send me your address).
The following quote from that same paper explains why I rejoice that I am well enough to go in public and to wear my mask there (at least for short periods).
" Persons with disabling sensitivities are denied access to community resources regularly and made ill when forced to access them out of necessity. Because this population is excluded from sight, business goes on as usual, and public venues remain the purview of those whose bodies conform to the modern day mandate of imperviousness to toxics."
Having gone past the initial self-consciousness wearing a mask (it's been about 4 years now), I've grown accustomed to and learned from the experience. When people stare, whisper or glance away so I won't see them looking, I get a tiny taste of the life experience of a person with a disfiguring disability .....helps build empathy and understanding. Usually I don't make eye contact right away so they can have a chance to check it out. When I do make eye contact many folks can tell that I'm smiling without seeing my mouth, and they smile right back! Most of them, except for the woman in the elevator in Nevada who asked "DO YOU HAVE A DISEASE?".
Another gratitude, the I CAN BREATHE honeycomb mask with carbon filter works well for me. I have the lace ones in most colors: from my photos you can see that the multi-colored is my favorite, it just goes with all my outfits and decor. I have the sport valve filters for yoga class or walking and I just ordered a bamboo activated-charcoal version.
I usually try to match my mask of the day to my other migraine head-gear (hat, head-wrap and/or glasses), but a full-blown non-responsive migraine attack trumps fashion, as you can see from this portrayal of me on my way to access medical services.
If I'm minding my own business somewhere that is fragrance-free and someone comes along and sits near me emitting "toxic fumes" from their person or clothing I must leave of course, but first, I whip out and don my very clinical-looking white honeycomb mask. I've found that it's a lot more "in your face" than the pretty ones (because it evokes fear of contagion). Sometimes I explain to the "fumer" the reason that I'm leaving; (sometimes I don't for obvious safety reasons). Once a french tourist to Berkeley had her husband threaten me physically after I informed her she polluted a cafe with her perfume. I told them, "Welcome to Berkeley". That people become violent over their use of perfume tells me that the fragrance chemicals are addictive, the chemical industry designs them that way.
I'm currently in the market for a serious respirator mask to have/maintain in case of emergency; such as, a traffic jam on a bridge, being held hostage in a laundromat, or in the event of our rather frequent Richmond refinery "incidents". I'll have to re-read the mask resources on Linda's blog "Need Protection" to find the right one.
Many folks come right out and tell me they covet my mask (little girls prefer the bright purple), so I refer them to I Can Breathe.com! Others stare at me and seem afraid that I have something contagious. Some of these (mostly children) ask "why are you wearing that?" Then I get to explain about dangers of perfumes and after-shave.
I'm about to begin carrying and passing out the "refrigerator cards" created by Fragrance Stinks. Maybe someone creative out there can figure out how to add the words: "Perfume is Pollution" to the mask itself, (kind of like a sandwich board) so people will get the message while they're staring at the mask.
A note of caution. As my teacher Gurdjieff would say (through the mouth of Mulla Nassr Eddin) "Every stick has two ends". Wearing a mask is a public reminder that we SHARE THE AIR; however, we don't want employers and others to assume that permission to wear a mask to work or school is an effective accommodation. A mask is not a panacea and should not be used as an excuse to maintain the status quo. More later on the effectiveness of the mask for work. Some of my struggles for work accommodation are described in a past blog.
Another quote from Pamela Gibson Reed:
"The hidden nature of MCS serves the status quo well in that persons with sensitivities disappear from the public scape, are not seen and normalized in others’ eyes, and business is allowed to proceed as usual."Hey - y'all lookin' at me ???
Sunday, December 8, 2013
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
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
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