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Illness & Romantic Relationships

Chronic illness takes a massive toll on romantic relationships, particularly because one’s partner is also usually their caregiver. Unfortunately, there’s not much helpful information on the topic; even academic research is sparse. You can help by completing a short survey (it took me 10 minutes) on the impact of migraine on one’s life and relationships, conducted by headache specialist Dawn Marcus and researchers from the University of Pittsburgh. The survey closes this Thursday, February 28.

Here are a few resources on illness and relationships:

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Illness or Not, Plans Get Derailed

Yesterday I described the aunt I wanted to be before migraine interfered with my life plans. Although migraine has commanded all my attention for the past decade, there’s no guarantee I would have been that ideal aunt even without chronic illness. Maybe my career or the 1,300 miles between my nieces, nephew and me would have gotten in the way, or maybe our relationships would have developed differently than I’d hoped.

It is easy to point at particular circumstances and say that if these problems hadn’t occurred, we’d be living the life we’d projected. But, chronic illness or not, it never works out that way. Few humans have designed their lives and then lived exactly according to that plan. Things come up. Whether in drastic and life-altering events or simply by making choices to go a different direction than expected. That’s kinda what life is all about — making it up as you go along.

I’d like to believe that my life would be exactly as I imagine it if only migraine hadn’t gotten in the way, but that’s not how it works. If not for migraine, some other factor would be exerting influence. My life would be different for sure, but it still wouldn’t be all cake and balloons.

As odd as this may seem, I find that tremendously comforting.

 

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The Migraine Thief Breaks My Heart

My oldest niece has been accepted to the college of her choice. I’m so, so proud of her and excited for the adventures awaiting her. And I’m crying because I missed her middle and high school years. Debilitating chronic migraine robbed me of the chance to watch, and help, my niece grow up.

Much of what migraine has taken from me I can still have — the career, time with friends, travel — but kids don’t stop changing. There’s so much I wanted to do and be for my niece and her sister and brother. Yes, they know I love them and that I’d visit and call more if I could (at least as well as kids can understand the havoc chronic illness wreaks on an adult’s life), but I wanted to be present as they grew up. I wanted to watch them mature from kids to preteens to teenagers to young adults. I wanted to be an adult they could call for help navigating the perils of adolescence.

The opportunity hasn’t completely passed me by. I truly believe I’m on a path to more migraine improvement. My oldest niece is 17, the younger one is 15, my nephew is 13. Many chances remain for me to be in their lives, especially if I do continue to feel better. Still, I’ve missed so many years, so many pivotal experiences, so much growth and change.

I’ve said that I don’t think I could survive these years of horrendous migraines without my innate optimism. I can always find the silver lining. Not today. Knowing I may have good times ahead cannot make up for all that I’ve missed with these kids I love so much.

My heart is breaking.

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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).

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It’s the Little Things, Like Folded Underwear

Seeing an oddly shaped stack of my clean, folded underwear brought tears to my eyes. It was a visual reminder of how kind my husband is. After working on TheraSpecs tasks all day on a Sunday, he’d done the dishes and folded the laundry that was decorating our family room. (Chores are normally my task since he’s crazy busy starting two businesses, but things pile up when I’m in a bad migraine spell.) And the guy FOLDED MY UNDERWEAR.

Not to bore you with the details of my undies, but you need a little background to understand why this is so great. For the first 13 years we lived together, I crumpled my underwear and threw it into a drawer. Then Hart’s mom did laundry for us once and folded them, thus introducing me to the wonders of folded underwear (they take up so little space in the drawer! and are so easy to find!). I never told Hart that I’d adopted a new practice and, until this week, when he’s folded laundry, he’s tossed it in a rumpled pile like always.

When I went to grab some underwear off the table, I saw two stacks. One I had folded and another folded, but slightly disheveled stack, which was Hart’s handiwork. It was so sweet I thought my heart would melt. He did his best to fold them, but each pair wound up in a strange, lumpy sort of shape. Because really, folding women’s underwear is not an intuitive thing, especially if you’ve never even worn them. But he tried and I never even asked him to.

People often ask how I manage to cope with such debilitating migraines. Having an incredible husband who does the little things is a huge help. I’d hate to be this mired in migraine without him.