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.


Busy

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.      http://www.mhni.com/headache-pain-faq/content-disclaimer/non-drug-treatment-alternatives/meditation

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.


Art

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.

Nest

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

Monarchs


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.

Alcatraz


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.  http://www.for-site.org/project/ai-weiwei-alcatraz/
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.