Monday, August 3, 2015

Bother me!

Drop-ins welcome

The problem

Not showing up

There are 14 million of us living with daily headache.  Chronic migraine means we are often unavailable for the activities and people we love.  We may not show up or we may have to leave early because of pain, nausea, severe fatigue and a host of other symptoms.  We're not dependable companions.  But everyday and every person is different.  Personally, I have spaces in my days and weeks when I'm more or less ok, maybe not great but functional to a degree.

Still, not showing up is a problem.  You begin to lose connection, feel out of touch.  Pretty soon friends and even family make the assumption that you probably can't do x or come to y or maybe you won't want to.  They begin to be afraid that they might bother you if they call or just show up at your door.  They may make the assumption that you'll call when you're up to doing something, and until then, unsolicited calls or contacts will be intrusive.

Fear and loathing

Most of us are afraid of serious illness.  No one wants to believe he or she might be afflicted with pain and suffering, and being around people who are sick may tap into profound fears.  It's icky, too much of a reminder that you too might succumb.  It may be hard for others to know what to do or say to someone who is pain.


Then there's the busy factor.  We're a busy culture with the constants of work, family and just keeping up with the demands of the lives we've chosen.  We all live with schedules and calendars, but perforce, those of us with severe headaches march to a different rhythm than others.  It puts us at odds with the prevailing pace.  I function best when I can do what my body feels like at any given time or day, but that often, means I do it alone because everyone else is already committed.  It's complicated and difficult, this dance with our bodies and life around us.  

Home alone - isolation

Most of us spend way more time around the house than we'd like - recuperating from the last headache or working up to the next one.  But, personally, unless I'm in the thick of it, I like to see people.  Sometimes if I plan ahead to do things, I'm able to juggle my pain and other meds so I actually can show up.  I have a friend, Ernie, who lives in the neighborhood.  He calls or texts 3 or 4 times a week and often drops by for coffee in the morning to consult my husband about projects, talk about his art work or just chat.  He doesn't stay long.  He's a busy guy.  But I love it when he appears at my door.  Sometimes it makes my morning and usually, often, I can join in.

A solution

Finding community

So what is the solution to the isolation that comes with chronic headache?  Different for everybody, but here's how I work to stay in touch.
  • Bother me!  This is an invitation.
  • I continue to make plans to get together for social, recreational and educational activities.  If necessary I remind my companions that I'll call if I can't make it.  Most people who know me well are already aware, but it doesn't hurt to put it out there sometimes to keep communication clear and open.  
  • If I haven't heard from someone in a while, I remind myself to pick up the phone and call instead of waiting and feeling like I've been neglected or forgotten.
  • I have some weekly and monthly commitments that involve small groups of people including taking a yoga class, participating in a couple of art groups, and going to a church service.  Yoga is a long term practice for me, and I'm lucky that my teacher is also my friend.  My husband and I belong to a group of four couples who share yard and house maintenance and a communal meal once a month.  Sometimes the best I can do is pull weeds on my hands and knees or show up for lunch, but it's almost always a pleasure.  We try to babysit for our grandson weekly.  There's nothing like hanging out with a 4-year-old to keep you on your toes and recapture the magic in life. 
  • It's summer now, and I try to swim in the chilly waters of the bay 2 or 3 times a week with a couple of friends.  They call or if not, I pick up the phone or shoot off an email or text.
  • While I haven't had much energy lately for hosting dinner guests, once a week we call and invite friends to meet us at a local restaurant or come over for dessert.
  • This sounds contrary, but it helps me to remember that I actually like and do better with a fair amount of alone time.
  • Although I don't always succeed, I try not to compare my life to others. My highly energetic, social butterfly of a brother-in-law arrived yesterday from 4 years in Paris.  Full of stories and plans for future activities now that he's back here, Doug is a reminder of how circumscribed my life sometimes feels.  But these kinds of comparisons are a trap, and on my good days I sit back and enjoy whatever high points the day has to offer.  Today is a beautiful warm, sunny day.  It's feeling good right now to sit at the window and write as I look out at the cedar trees swaying in the breeze, hear the bird sounds of the jays and chickadees and smell the chicken turning into soup in a big pot on the stove. 

Monday, May 4, 2015

When things aren't going well

Coping level
Hard days night

The last few months have been ugly.  Headaches have been daily, and I'm not sleeping well either.  Pain and anxiety have invaded my dreams.  When I stagger out of bed in the morning, I'm often in the worst shape of the day.  Things tends to slowly improve as the day wears on.  Then they start to deteriorate in the evening with fatigue and onset of dull pain in my head or muscle spasms in my upper back.  I know this is not just my story.  Many with chronic headache could tell their own versions of the same tale.

So what do you do when things aren't going well, when you're scraping the bottom of the barrel and it seems there's nothing to be found there?

Exploring meditation

Serendipity.  I ran into an old friend the other day, a fellow migraineur.  We met for coffee, checked in with each other on how we were doing and one of the subjects that came up was meditation.  Nancy has started meditating and after sticking with it for a few months, found it to be very helpful.  This little piece of information got to me at the right time, and I have begun to explore.  A large body of research over the years supports meditation as a powerful tool for pain relief.

Having experience with yoga, biofeedback and progressive muscular relaxation, I know that breath work is a powerful tool for well being.  But of course mindfulness meditation is a whole other level as well as a spiritual path not yet traveled for me.  It's a commitment I haven't yet made, but I'm moving in that direction.  I've begun to set aside 20 min. in the morning to meditate.  I've attended an evening session at a local meditation center and found a tutor to support my beginning to practice.  One of the difficulties for me has been that most of the action, the group sits and beginner classes are either quite early in the morning or in the evening after working hours.  These are my hardest times, so I've had to work to find some support during the middle of the day.

Help at hand
It feels hopeful that there is a possible path forward that doesn't include more medication since I'm becoming increasingly intolerant of each "new" drug that I try.


For me, artistic expression is a way through the pain.  I have been a weaver for a long time, but lately I haven't been able or called to my loom.  Instead, I've been working with oil pastels.  My energy level is low, fatigue high, but somehow, what I call coloring is working for me.  Drawings and sometimes collages  reflect my mood, my dreams, my memories and more.  I have no formal art training, but it doesn't matter.  It just feels good and I lose myself in the work.

A book for us all - "How to be Sick" by Toni Bernhard  

There are many helpful guides out there that give headache-specific advice on how to recognize triggers, that provide lists of all kinds:  medications available to prevent, abort or rescue you from migraine pain, lists of foods to avoid, techniques and equipment to help minimize the pain.  Books by physicians in headache medicine inform their readers about the mechanism of a migraine, how to "conquer" headache, how to recognize and avoid rebound and much more.

But what if you have followed all the guides, have the best headache care available and you still have chronic daily headache?  "How to be Sick: a Buddhist-inspired guide for the chronically ill and their caregivers" is a whole different approach.  Rather than tell you how you might avoid or get rid of the disease, this book gives you skills to live with what you are experiencing right now.  It is the most helpful book I've read in a long time.

Before she got sick, author Toni Bernhard was about to begin her twentieth year as a law professor at the University of California at Davis.  Now she suffers from chronic fatigue syndrome, a post viral disease that causes severe, debilitating pain and fatigue.  On a European vacation trip, Bernhard contracted a viral infection from which she has never recovered.  No longer able to practice her profession, she began to apply her long-term spiritual practice of Buddhism to help herself live a full life in the midst of daily pain.  Like many of us, she continues to work with her doctors to search for effective treatment.


Gifts to nurture

I belong to a small group of women who meet once a week to do art.  None of us have much experience, but we're all drawn to explore.  And we have a great leader who is not only a fine artist but also has a background in art therapy.  Recently one of her prompts suggested we make an artwork that reflects a gift or strength that needs the most nurturing right now.  Initially I was stumped, but as the day wore on, I began to make a little list:  writing, laughter, seeing (often with my camera), connection with nature.  
 I have no idea what form the art will take, but just making the list has been helpful.  I've been hard-pressed to do any writing because I just haven't been able to figure out what I have to offer right now, but Julia's prompt lead me to make this attempt.

Friday, January 23, 2015

Butterfly season


I am with 2 friends in Santa Cruz, California.  A mini vacation for a week in the guise of house sitting for my son.

Monarch butterflies overwinter in Santa Cruz starting in late October or November.  In the spring they begin their astonishing, long migration to the Rocky mountains.  Four generations live and die to complete this round-trip journey.  Here in Santa Cruz they gather in fluttery clusters, flitting through the eucalyptus forest in Natural Bridges State Beach.  It is otherworldly, the ambiant light filtering through the tall, graceful trees with their long, slender, leaves.

In my search for metaphors for healing, witnessing this beautiful butterfly collective ranks high. Symbolically, the butterfly is all about metamorphosis, personal transformation, renewal and rebirth.  It is breathtaking and fills me with hope.


The next day we drive 70 miles north along the coast, past truck farms and spectacular ocean vistas and then on into San Francisco.  We take a ferry to Alcatraz Is. to see @Large, an exhibit of work by famed Chinese artist Ai Weiwei.
It is a tribute to freedom of expression, this monumental exhibit which sprawls in many parts throughout the prison.  It is about about journalists, poets, writers, whistle blowers, people from around the world who have been convicted, imprisoned, exiled for speaking out.  It is about many kinds of prisons and prisoners in a place, Alcatraz, that was the first and perhaps the most notorious maximum-security penitentiary in the U.S.  It is also about transformation of a place haunted by despair and captivity to one filled with recognition of sacrifices made and ultimately with beauty.  Go if you can.

Desaparecido (disappeared in Spanish)

A convict is a person who has been detained, disappeard and disconnected from life as we know it.  What constitutes freedom?  What role does communication play?  What can we do to ensure we will be heard?  What is our responsibility to ensure freedom for one another around the globe?  These are among the questions this exhibit raises.

After I leave Alcatraz and contemplate my experience there, I begin to think about my own experience with pain, how it has robbed me of a certain kind of freedom.  While I don't pretend to understand the degree of loss of personal freedom that prisoners on Alcatraz and elsewhere have endured, I do know that we who live with chronic pain been detained and often disconnected from the life we have led, would like to live.  Writing this story is a way for me and, by proxy others,  to be heard, a communication between me and my readers.

Right now my headaches are partially controlled by a combination of 5 powerful medications.  In one of the ugly ironies of medical managment of migraines, I am taking a drug that is actually working to decrease headache frequency and severity.  However, in the process of doing so, I'm experiencing intolerable side effects.  Thus I have to go off this medication.  But not until I get home from this California trip.

While I've enjoyed myself, going out for lunch, making a fire in the back yard and cooking hot dogs while gabbing with friends, going to a fantastic exhibit, walking the beach, and seeing my son, it's hanging over my head, this thing with the drugs.  Whatever is ahead in my own story, I know I can still go to the place of butterflies, beaches and, strangely, to Alcatraz to experience a place of personal freedom.

Thursday, January 8, 2015

I prefer a window seat

Whether it's on an airplane or elsewhere, I love to be able to see out and watch the world go by.  Looking down from 35,000 feet up fascinates me, how you can't differentiate the canyons from the mountains or up from down.  Is what I'm seeing a ridge or a river, a mountain or a mole hill?  Flying over the Sea of Cortez, peering west across a hump of land, is that the Pacific Ocean I spy on the other side or the endless blue sky floating above a peak?

Coming home from Zihuatanejo, Mexico, I am riveted by the sudden sight below of an active volcano, steam venting from the top.  Then right beside it another ancient volcano with its top blown off resembling Mt. Saint Helens in my home state of Washington.  Then two little cinder cones not far away.

It all takes me completely out of myself.  The headaches recede from my awareness as I wing my way high over the surface of the earth  This shift from my inner to the outer world, this change in perspective displaces pain.

At home the whole south side of our house is filled with windows in every room.  When my kids were young, it was a distinct advantage to be able to see what they were up to.  Now I have a rocking chair situated in the bay window.  It's my go-to spot for reading, writing, drawing or basking in the sun surrounded by light and leaf, the next best thing to being outside no matter what the weather.  The form and lines of the apple tree in winter, the sun shining on the fir flooring, the sight of a hawk perched on a tree near the bird feeder, looking for an easy mark, a fast-food meal.  They all catch my eye, pluck my heart strings and move me, for the present moment, beyond the weight of my worries.

Thursday, December 25, 2014

Moment by moment


I am yet again back in the relm of daily headaches that are minimally responsive to the Cefaly, as well as all the usual preventatives and some unusual ones.  It's been creeping up on me.  I had a period, beginning in June, when I was down to 1 to 2 headaches a week.  In this sort of low-frequency headache phase, I tend to forget that I have chronic migraine.  The headaches are easily controlled and infrequent enough for me to avoid rebound.  I think of them as just an occasional nuisance.  I am possessed by a sort of selective amnesia.  There's a level at which I know that I may once more have to cope with everyday pain, nausea and a host of bizarre symptoms, but this awareness is pushed down and mostly out of conscious sight.

Blissfully, that's what summer and early fall were like, but as Oct. and then Nov. wore out, the headaches morphed into 3 to 4 times a week, but were fairly easily controlled.  Then 4 or 5 times a week, but I could knock them back with the Cephaly.  In Nov. I caught a nasty cold from my grandson, and as the cold wound down, my headaches cranked up.  Just before our Dec. Mexico trip, a highlight of my year, I began to have daily headaches.  It took constant use of the Cefaly to abort them.  I increased my preventative meds to no avail, and I began spending a day or two a week flattened on my futon.

Zihuatanejo Bay

Enjoying life one moment at a time

We are in the fishing town (no longer a village) of Zihuatanejo, Mexico, and I am preoccupied and struggling to accept that I am back in a place of daily migraines.  So in an effort to come to terms and remember why and how I love this place, I'm going to acknowledge the really good moments.

•  In the morning sitting on our veranda with a cup of tea as the sun comes up, birds on the wing, fishing boats crisscrossing the bay
•  Speaking in Spanish to the friendly people who remember me from previous visits



•  Lazy swimming in the hotel pool
•  Shopping in Spanish


•  Lounging on our bed looking out the window at deep blue water, listening to the surf and the screams of children playing on the beach below
•  Swimming in the ocean, the water like silk on my skin
•  Taking pictures of anything that catches my eye............and there's a lot that catches my eye
•  Watching festivities on el Dia de la Virgin de Guadalupe (the Day of the Virgin of Guadelupe), children in traditional costumes, music and parades

•  Eating Mexican food, finding new restaurants that we like and returning to old favorites
•  Observing the pelicans, frigate birds and gulls fish for their dinner, and then there's this guy..............

•  Seeing a brown booby for the first time
•  Keeping watch on an iguana as he creeps slowly under the roof tiles of the room below
•  In the evening watching the sun slowly slip down over the Pacific
•  Swinging in the hammock at night in the dark, listening to the waves roll in
•  Eyeing shy little gekos as they skitter across a wall and hearing their amazingly loud chirp
•  Listening to the crickets song, the squeak of bats and all the other little unidentified cheeps, creaks and rustles of insects in the not-so-quiet tropic night

Attitude adjustment

As I wrote this blog entry over the course of more than a week, it, indeed, helped me to remember that, really, we live each moment one at a time, and many, many of those moments are good ones.  Now if I can just hold onto this little piece of wisdom when I get back to the rainy, dark chill of winter in my home state of Washington, I will have brought home the best kind of souvenir from my Mexican vacation.

Friday, December 12, 2014

Anatomy of a headache week


Tonight we're planning on going to a writer's open mike session at Village Books, and we're both on the list to read.  My first time.  
I feel a slight pressure on the left side of my head as I'm preparing dinner.  Pretty soon I'm thinking I should use my Cefaly to try to head this off, whatever it is.  But time is short so I finish cooking, we eat and go.

We're at the store a little early to get seats in the rear in case I need to make a quick exit.  I'm browsing the used books when I begin to feel distinctly off.  I'm uneasy with a feeling of impending doom.  My gut is churning and tension is crawling across the tops of my shoulders.  I can't concentrate, can't hold still long enough to read the titles before me much less delve deeper into the reviews on the back of the books that might interest me.  I use the bathroom which helps a little but not much.  My discomfort and anxiety mounting by the minute, I move on to a different section of the book shelves and then finally give in and take my seat beside my husband.  I still don't really have any head pain, but I've learned that this supreme agitation and nerviness portend an oncoming migraine.  I wonder if I can make it through the next hour and a half in public, pay attention, read in front of an audience without having to make a run for the door.

As people begin to read, my attention turns to their words and the images they call forth.  I am able to compartmentalize enough to shut out the discomfort.  My turn comes and I get through my short story with a fair amount of composure.  My husband reads after me and then again at the end of the evening, another piece we have worked on together.  I'm happy to have made it through and to hear this story about our son's unusual education at sea.

At home I put on the Cefaly and half way through the 20 min. session I feel my body begin to calm down.  My head clears and my discomfort resolves.  I have dodged the bullet.

I love to take pictures.  I carry my camera with me everywhere I go throughout the week.  This dreamy image was pure serendipity.  The water reflections were breathtaking, but I had no idea my camera had captured this lovely bird taking wing until I downloaded the day's "catch" onto my computer.

bird luck

Tues., Wed

I have a 9:30 am dental appointment for teeth cleaning.  No big deal, but I don't do well with dental procedures.  I've been better lately so I decide to forgo the nitrous oxide, which has been a miracle method to prevent the inevitable post dental headache.  As soon as I finish and walk out of the dentist's office, I get a little warning throb, which is no big deal, but it's there.  I go on about my day, run a couple of errands and head home.  I have a dinner date with friends. Good time and good food.  I'm home early and use the Cefaly before bed because there has been a nagging little pain in my left temple off and on all day.

The next morning, early, 4 or 5 am, I awake to a major headache.  I take my abortive, naratriptan, and go back to bed where I spend the better part of the day.  The headache finally resolves around 4 or 5 pm.  The lesson here for me is to ask for nitrous even for cleaning and secondly, as I should know by now, don't ignore the little ones.  The Cefaly has been working for me but only if I use it at the very beginning of the headache.  Wait, and I've effectively eliminated that avenue for averting a migraine.  It's a hard thing, though, to be perpetually aware and virtually impossible to, then, always make the right choice to deal with a daily headache.  Nearly every day becomes a calculation, when, whether or how to treat what might be the beginnings of the next headache.  Sometimes I just have to live my life and accept the consequences of occasionally ignoring or refusing to interpret each and every little pain or bodily sensation.

Thurs. & Fri.

I'm essentially having headaches almost everyday, but lately I have been able to use the Cefaly to abort them.  It is a huge advantage to be able to avoid medication to shut them down.


We are babysitting my grandson when the headache starts.  No time out, so I resort to Naratriptan, which is generic Amerge.  I have been able to restrict my use to no more than 2 x weekly since early summer.


The weather has turned very cold, but it's beautiful and the sun is shining.  Mid morning I have an aura which lasts about 20 minutes like always.  I don't always get a headache afterward, but this time I do.  It takes 3 sessions with the Cefaly to knock it down.  I have heard that for some people the effectiveness of this device decreases over time, and I'm beginning to fear that may be happening for me.

This Sunday morning we are scheduled to participate in a work party.  Once a month a small group of friends gathers for about 2 or 3 hours in the morning to do yard work or occasionally paint or do other maintenance.  We rotate between houses from one month to the next.  We break around noon or 1:00 and eat a potluck lunch together.  It's a great group and a genuine pleasure to work and eat together.  This morning's work is cancelled on short notice to take care of aging parents in crisis.  The plan is to eat together anyhow if things turn out ok.

I am relieved since I have a headache and I don't have to admit that I can't show up and work yet again.  These days I make it about half the time.  Sometimes I recover enough to show up in time for lunch.  While everyone is very supportive and understanding,  I often feel like I'm not doing my fair share. Today Kim's mother is feeling slightly better by lunch time and we do, in fact gather together for a tasty meal of enchiladas, salad, cornbread and ice cream.  Even though we haven't worked today, we have all contributed food and exchanged family news, myself included. 

Sunday, November 16, 2014

The electric bike solution

The trouble with exercise

Wanna decrease your migraines?  Get more exercise.  BUT if you have chronic migraines or chronic daily headache, you are generally so bushed that anything beyond an easy stroll seems insurmountable.  Fatigue is an ever-present problem.  I'm usually either recovering from a migraine or working up to the next one.  I used to walk a lot until I fell a couple of years ago.  I now have achilles tendonitis, which means that long walks and hikes are out.  I like to swim, but I don't do well with chlorine, so that's a summer activity for me.  I continue to do yoga and take short walks, but not much else.  I used to ride my bike, but we live in hilly terrain, and I just no longer have the stamina to go beyond our neighborhood.  While I might make it downtown or over to my son's house half way across town, I don't have the confidence that I can then get home without being totally wiped out.


Now the equation has changed.  After much research and discussion with my husband, Cousin Carl, and friend Michael, a couple of weeks ago we went on a shopping trip to Seattle.  We bought a kit to retrofit my own bike with an electric motor, battery and controller.  I now have an electric bike which gives me the boost I need to pedal around our up-and-down town.  I took ten-mile bike ride last weekend and still had energy to devote to the rest of my day.  The bike allows me to pedal while the electric motor assists as much as I want or need it to.  It virtually eliminates the hills and vastly extends the distance I can go.  On the other hand, if I'm feeling energetic, I can cut the power assist and cruise along under my own steam.

Electric bicycles have been around for a while, but just in the last year or so there has been an upsurge in interest.  There are a lot of electrics on the road now.  People choose to ride an electric bike for a variety of reasons.  Some folks commute to work and don't want to arrive all sweaty and in need of a shower.  Some of us are getting older and have heath issues including joint problems that makes biking harder.  I have a friend who works nights.  His work place is close to home, but the return trip is up a big hill.  After a 12 hour shift, he just needs a little help getting home in the wee hours of the morning.

There are many options now.  If you're interested in an electric bicycle, you'll need to do your homework.  Seattle is a cycle-conscious city, so there is a lot available in terms of different brands, systems, range and power.  However, we found there was no one shop that carried all the different choices.  We had to drive all over town to look at a few on the top of our list. You can buy a bike all tricked out with the electric system built in or you can retrofit your own bike with a kit.  There is a big price range.  They're not cheap, but neither is a gym membership.