Chronic Migraine, Coping

Perspective

Hart: How do you feel now?

Kerrie: You know, it’s not too bad. It’s like a hot steel rod is poking through my left temple and out my eyebrow.

Hart: Um, not many people could fathom how that description would constitute “not too bad.”

My entire head wasn’t throbbing and the brain fog and fatigue were slight, so the sensation of a metal poker wasn’t a big deal. As far as migraines go, it was pretty mild.

And that’s another thing Hart has called me out on recently — the idea that any migraine could ever be mild. Compared to the migraines that are strongest in my memory, the ones I’ve had lately are positively benign.

The perspective that allows me to classify a migraine as mild is one I’d prefer to never have gained, though now that I’m through the worst days (for now, at least), I’m glad to have it. It’s the biggest cliché of illness, but I really do appreciate every day that I feel OK in a way a person who has always been healthy never could.

Learning this lesson was excruciating, but reaping the rewards of it is nothing short of amazing. Going though each day aware of how fortunate I am to have it is a wonderful, joyous way to live.

Chronic Migraine, Coping, Friends & Family

Gratitude

Having just drafted a post on gratitude for Migraine.com, the topic was fresh in my mind when I couldn’t sleep the other night. Instead of obsessing over why I was tossing and turning, I mulled over things I am thankful for. Each day I list three things I am grateful for as part of my strategy to keep chronic migraine from overwhelming me; this is more of a global list. As I feel like I’ve been a complainer on here lately, I wanted to share it with you all so you see that I’m not miserable and depressed! And to share how rich a life can be even with chronic illness.

  • A husband who understands how debilitating a migraine attack is and often has a better grasp on how I feel than I do.
  • My family for being loving, caring and messy in the way only family can be.
  • Migraine friends who truly get what my days are like and non-migraine friends who try.
  • The people I get to connect with through this blog. I’m not able to be as connected as I’d like, but everyone who reaches out to me touches my heart and is in my thoughts.
  • Old friends who wait patiently while I burrow in my self-imposed migraine nest of rarely communicating with anyone.
  • My sister, who keeps calling, texting and playing Words With Friends with me even when I retreat into migraine solitude.
  • The amazing team of doctors that I kind of stumbled upon when I moved back here.
  • People who knew me before the chronic migraine became too severe to take Advil and ignore — the ones who are so understanding because they remember me as vivacious.
  • My nieces and nephew, with whom I was fortunate to see often when they were young. I’ve missed them so much the last five years, but am so proud of the teenagers they have become.
  • COBRA and pre-existing condition health care coverage, which allow my husband to pursue his dream of starting his own business.
  • Jack Kornfield’s guided meditations, which showed me how to heal, particularly Guided Meditations for Self-Healing.
  • Tara Brach, whose guided meditations and podcast talks have taught me how to experience emotions without being carried away by them. (She has also published a great book, but my favorite resources are those on her website, all of which are free!)
  • How to Be Sick, a book by Toni Bernhard that applies principles of Buddhism to life with chronic illness in a straightforward, non-preachy manner.
  • The Anatomy of Hopeby Jerome Groopman, which taught me that hope is not a blind wish, but the belief that one can live a good life against all odds.
  • Anne Lamott’s writing, especially in the writing guide Bird by Bird and her willingness to share imperfect, thought-provoking and hilarious missives on Facebook.
  • That I was able to attend some of the American Headache Society symposium and felt like my engaged, intelligent self while there. And for the dedicated, compassionate, caring physicians, psychologists and researchers I met there.
  • That Excedrin Migraine changed their ad in response to the outcry of The Daily Headache readers.
  • Getting into the groove of writing and that feeling when I get a sentence or phrase just right.
  • The friends who are so supportive of my writing.
  • Being able to read books again. Proof that chronic migraine can improve and we can get back the things we lost.
  • Doctors who pursue unlikely avenues of inquiry.
  • That I’m a natural optimist.
  • Pinterest for migraine distractions. Facebook for keeping me somewhat connected to the world even when I’m hibernating. And Words With Friends for giving me a chance to play with loved ones I rarely see.
  • Friends who don’t mind if I sit on their couch like a zombie because I’ve had a migraine for a week and need new scenery. Even when I smell like a zombie, too.
  • That I know what the basic structure of my book will be. No idea when I’ll have the energy and mental wherewithal to write it, but it will be a tool to help people with chronic illness live happy, rewarding lives.
  • Baking. Nothing I bake is safe for my severely restricted migraine diet, but the process of baking brings me so much joy.
  • Fall weather in Phoenix.
  • My adorable yellow house in Central Phoenix.
  • Oven roasted Brussels sprouts with garlic added. Really.
  • That sleep is usually easy.
  • The quirky, funny, unconditionally loving pets I’ve been so fortunate to live with. A pet is too much work for my life right now, but memories of Cricket, Kayla and Cleo keep me smiling.
  • That the 2012 presidential election is over.
  • My fantastic neighborhood yoga studio.
  • A year-round farmers’ market that’s indoors in summer.
  • The smell of rain in the desert.
  • My perfectly sized and shaped bathtub.

Yesterday I dreamed that a doctor told me I was all out of treatment possibilities and that suicide was my only option. I kept telling him that I wanted to live and he wanted to know why since I had such terrible and frequent migraines. I said, “Don’t you see, I have a great life? Of course the migraines are awful, but they aren’t the sum of my life. I have so much to live for.” I was so grateful to wake up and know that doctor was totally wrong. There is never an end to treatment options. It has been almost a year since I first felt the joy of finding a treatment that helps and I’m thankful for every day of improvement since then (even if I grumble about it sometimes).

Coping

In Gratitude for My Imperfect Body

For many years, I felt as if my body had betrayed me. The physical exhaustion, mental fogginess and excruciating pain of chronic migraine smothered my energetic, spirited personality. I was young and should have had strength and stamina, but was instead trapped inside a broken body. In believing this, not only did my body appear defective, so did my entire self.

Tired of being angry with my body — and, by extension, myself — I focused on everything my body does well, like walking, breathing, circulating blood. From this view, the constant, mundane tasks to which I give no thought become small miracles. Yes, my neurological system misfires regularly, but that this complicated series of systems works at all is far more profound than the frustrations with its quirks.

How could my body have betrayed me? There is no contract, no guarantee that a person will be healthy and pain-free. In fact, the expectation that a body should behave perfectly has come to seem absurd. The human form is a complicated piece of machinery; any one body is bound to have some flaws.

With my new perspective has come an unexpected gratitude: I am now thankful when my body aches after I’ve been laid up with a migraine for a couple days. That deep itch to move and stretch, to use my body instead of just inhabit it, reminds me how resilient this sometimes bedridden body truly is.

Tonight I will go to a more strenuous yoga class than usual. My movements may not be as effortless or graceful as other students’, but the mere fact of my participation is a greater triumph than I could imagine a month ago. I will stretch and twist, bend and balance from the tremendous strength that I now know lies within my beautifully imperfect body.

Coping

It’s Hard to Be Thankful

Living with illness can make even the most optimistic person feel defeated. Rae from Limbodacious has written (yet another) beautiful post about a recent realization.

“. . . [O]n one particularly beautiful autumn day, Husband and I decided to take some of our dogs out for a nice walk. As we rounded the corner coming back towards our house, I was overcome by one of those lovely moments where everything that you hold dear is all in your line of sight. I saw my loving husband that works so hard to make me happy, our charming house that we have fixed up with our own hands, our dogs that never allow our lives to be dull, all on our darling tree-lined street in a friendly and safe neighborhood.”

“And I just thought, wow… my life sucks.”

It’s worth clicking through to the full post.