Friday, July 26, 2013

Migraine roller coaster on the roll

Santa Cruz boardwalk

Rolling South

Last week we packed up the van and headed south on our annual road trip from northwest Washington to Santa Cruz, Calif.  This seasonal Washington to California migration has been a part of my entire adult life.  I left my native California to move to Oregon and later Washington at age 24.  One or two times a year I would return to visit my parents.  Eventually, my husband, then my children became part of these journeys.  My father and then my mother died, and for a couple of years, I had seemingly left my home state behind for good.  Then my youngest son settled into Santa Cruz with a job and a girlfriend, and I found myself, like a seasonal laborer, once again committed to heading south on a regular basis.  This feels right that I get to come 'home' again once or twice a year.  

MBARI open house

Herky jerky pain

But year by year my trips have been punctuated by worsening pain.  The trajectory is scary, and when we hit the freeway to head south this year, I was filled with trepidation.  In spite of a recent cervical radio frequency ablation, my headaches continue to be daily or every other day.  I awake with a migraine, which responds (thankfully) to DHE injections, and the pain slowly subsides over the course of hours.  For the remainder of my day, I am limp, exhausted physically and mentally.  The following day I awake more or less ok and slowly surface to a day without major pain, but I'm often batting zero in the energy league.  Sometimes I do okay and have a day or two of relative normality before I am jerked back to survival mode by the pain.  The feelings of illness, pain, and icky recovery are relentless.  Right now it's hard to believe this is anything but a slippery slope.  Camping and being on the road have been hard, hard, hard this year.

Santa Cruz beach fires

Emotional roller coaster

There are days, weeks, months when I tolerate all this fairly well, but right now I have just had it.  I am done in, out of patience, angry and depressed.  All this while attempting to travel.  As always, I have resources and an idea or even several ideas about what I must do when I get home in a couple of days.  But this time around, this trip - I feel beaten up by the angel of migraine.  

Dinner at Vasilis

High points in spite of it all

Yup, even though I am currently in shitty shape, there have been good days and sterling moments.  And this is what I'll try to remember:  getting a disc golf lesson from my hysterically funny son, going to the annual open house at MBARI or the Monterey Bay Aquarium Research Institute where he works, going out to dinner at Vasilis Greek Restaurant in Santa Cruz with my family, camping in the redwoods, swimming in the Merced River in Yosemite National Park, swimming in the ocean in Santa Cruz, photographing the Santa Cruz boardwalk and amusement park at sunset with my husband and son, and just being together one more time.


Friday, July 5, 2013

Tips for Trips

Traveling with migraine or chronic daily headache

I love to travel, be off, off, off and away.  But with migraines, there's a catch, isn't there.  Basically traveling is often stressful, and stress and migraines are just not a good mix.  On the other hand, it is so worth it to me to work around my pain issues and find a way to take off on my next adventure.  I always have an idea or plan brewing about where and when to go.

Belief:  plans and fantasies are important

This summer my husband and I are taking off in our van and driving from northwest Washington State to Santa Cruz, Calif. to see my son - and maybe beyond.  This has become an annual trip for us with many pleasurable memories.  Each year, we take a detour here or there, a little different route, revisit some old haunts, since I'm originally from California, or seek out some new spots.  This year my plan is to swim my way south, making our first overnight stop at Sol Duc Hot Springs.  Least you think we're talking luxury travel here, let me point out we'll be in the campground, not the lodge.

Shasta Calif.

In September, my friend Janet and I are taking a short trip, a long weekend really, to Vancouver, BC for a two and a half day workshop, lecture in fiber arts at the annual Maiwa symposium.

Following that, I'm hoping to head south to Mexico again, on my own, in October or early November, seek out very economical lodgings, and pitch my tent, so to speak, for a couple of months.  I would like to tutor English while I'm there.  This one could change, but still - it's out there, something between a fantasy and a plan.

Or..... if that doesn't pan out, my friend Meredith and I are talking about a road trip to the Southwest, the South and then Florida.  I have no idea how I would do, on the road, for the time it takes to get that far, but I could always bail and head for home at the nearest airport.


So how do I do this, and how could you?
  1. Plan ahead.  Sadly, spur of the moment traveling is just too fraught with possible disaster for me and probably for you.
  2. Go where you want to go.  Pick a destination that will be pleasurable to you within your budget. This should include a place that, when you arrive, will allow you to do things you are able to do and enjoy doing.  
  3. Choose a place where you have a good chance of being comfortable at least part of the time.  You just have to be a little careful.  I have always wanted to go to Machu Picchu, Peru, and a few years ago, I was heavily into the planning stage with a friend.  As the year wore on and the time to actually make some travel decisions closed in, I began to get cold feet.  It was a really ambitious trip to a harsh climate, high altitude, and it was going to involve some hard travelin'.  In the end, I decided there was just too great a risk that I would spend all the money and effort to get there, and end up in pain, unable to actually be present in a fantastic place.  I cancelled out.  In the end I was disappointed but relieved.  I knew I had made the right decision for me.
  4. Give yourself some space.  I have to have some alone time and space to let my body rest and rejuvenate.  Sometimes this means I don't go on an excursion or walk with whoever.  I might take a nap or read for a few hours while just taking in the air, the sounds and sights immediately around me.
  5. Go with someone you trust to support you or travel alone, which for me, amounts to the same thing.  You need to feel sure that your traveling companion understands your limits and needs;  not that they must carry you, but that they must allow you, with grace, to take care of yourself.   
  6. Make it as easy on yourself as you can.  For example, when I go to Mexico, I usually add one night on the way down and/or on the way back to break up the loooong day.  That way I have a better chance of arriving in decent shape going and coming home.  If we take a camping trip, we leave open the option of getting a motel if things get rough.  Always leave yourself an out.  If any particular day's activity becomes too taxing, make sure you are in the position to cut it short if you need to.  Don't push too hard.  
    Monterey Bay Aquarium - fantastic, but I had to cut it a
    little short because the lighting plus long day triggered
    headache.  I'd go back, and I recommend it to anyone.
  7. Get all your scripts in order, and take extra medication - just in case.  Never check baggage w/ your meds in it.  Keep them close at hand.
  8. Carry all prescription medication in the container it came in with label from the doc, pharmacy, etc. with your name on it.
  9. Carry pain, sleeping and or anxiety medication, and use it when you need it.  Obviously this takes care and good judgment as well as the cooperation with your doctor.  Sometimes I get cranked up before a flight to Mexico, even though I've been many times.  I often take (judiciously) an extra half of a klonazepam tablet, which is one of my regular preventative drugs.  It calms me down and helps me arrive in better shape.  It also reduces the possibility that my gut will get upset.
  10. Take whatever gear keeps you more comfortable.  Here's my list:  neck pillow, ear plugs, iPod w/ noise blocking ear buds, eye mask, sun glasses and hat, my own pillow if traveling by car, travel yoga mat.
  11. Drink and eat frequently.  I carry an emergency stash of food so I won't get stuck over a long period with nothing I can eat.  If you're flying, once you've cleared security, fill your water bottle up in the restroom.
  12. Travel as light as you can.  Leave the extra stuff at home.  Go with a minimal wardrobe.  The more stuff you take, the more you have to take care of, carry, etc.
  13. Take luggage you can handle.  I fly with a smallish roller bag and a big fanny pack for most plane trips.  I used to carry a back pack, but my neck/ head issues just don't allow me to do that any more.
  14. Finally, take it easy.  Go slow.  If you're on a road trip, keep track of how you're feeling and stop when you need to.  If you're flying, once you arrive, give yourself and your body time to catch up.  Don't schedule some big event or excursion the day after you get there.  A final note:  I've personally found I can't travel by train, Amtrak that is.  I think it's the air circulation system that makes me sick.

Time travel

Sometimes, on any given day, I feel like I want to be anywhere but where I am, at home in Migralandia.  When that happens, I can time travel, transporting myself through time and space to memories and feelings of my last trip, or I can dream about my next one.