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. 


  1. Soon!

    Did you get my email about Emilie Flöge a few weeks ago?

    Thank you for the art and magic of the photo of your 4-year-old grandson and for your writing.

    I want to share something from one of your kindred spirits who lives in Germany. What you wrote made me think of this post she wrote yesterday:

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