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Migraine in “We Were Liars”

“I cannot recall a time when a narrator has brought this much focus on migraine disease with such apt descriptions,” Janet wrote in her Migraine.com review of the novel We Were Liars.

I had similar thoughts when I read the book a month ago (at Janet’s recommendation). The descriptions were so good that I highlighted passage after passage, eager to share them with you. Here are a couple:

“Welcome to my skull. A truck is rolling over the bones of my neck and head. The vertebrae break, the brains pop and ooze. A thousand flashlights shine in my eyes. The world tilts. I throw up. I black out. This happens all the time. It’s nothing but an ordinary day.”

“‘You have no idea what it feels like to have headaches like this. No idea. It hurts,’ I say—and I realize tears are running down my face, though I’m not sobbing. “’It makes it hard to be alive, some days. A lot of times I wish I were dead, I truly do, just to make the pain stop.’”

Then I got to the twist for which the book is known. The power of these incredible descriptions was diffused by a stereotype that, while not untrue, is a major contributor to migraine’s stigma. So much so that all the positive regard I’d had for the book’s depictions of migraine was gone. For me, no matter how elegant and accurate the descriptions, they can’t cancel out the harmful message I fear the book ultimately spreads about migraine.

I was so eager to have a wildly popular book raise some awareness of the severity of migraine that maybe I expected too much. Still, I’m disappointed. I’d like to say more, but don’t want to risk spoiling the book for anyone — it’s a great read.

That’s my take, which is probably a minority opinion among migraineurs. Have you read We Were Liars? What do you think of how it depicts migraine? (No spoilers, please!)

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Life’s So Much Easier Without a Constant Migraine

Hart and I spent the weekend in San Diego. It was a lovely time with Hart’s dad and his wife, though the lingering memory of the trip is the drive home in which I drove four of the six hours. That’s the remarkable memory: I drove two-thirds of the way home. This is a cause for celebration because it means I felt well enough to drive for that long.

Having some relief from more than a decade of debilitating daily migraines has obviously made a huge difference in my life. There are some big changes — I’m writing a ton and investigating freelance opportunities — but I notice the small changes the most. Things like,

  • Waking up after eight hours of sleep and popping right out of bed
  • Going straight to work after getting up
  • Going grocery shopping and cooking and working and exercising and seeing friends all in the same day
  • Making plans and assuming I’ll be able to keep them
  • Not having any downtime in a day in which I can read (that’s a good thing — now I read before sleep, not to entertain myself because I can’t move)
  • Being able to run my own errands
  • Driving when Hart and I go out
  • Not having to break for brain fog or fatigue when I’m writing
  • Thinking that I need to do something around the house and being able to do it

My health is nowhere close to perfect. I have migraines more days than not. I have head pain every moment of every day. It took me nearly two months to recover from my latest dietary snafu and my current diet is a little shaky. Yet, I find myself saying, “I can’t believe I was able to do that!” regularly, which I usually follow with high-fiving Hart.

That’s really the gist of it: I cannot believe everything I’m able to do. The title to this post is so obvious — of course life is easier without a constant migraine — and yet that’s exactly what I marvel about every day. Doing the tasks of day-to-day life were so difficult for me for so long that they now seem impossibly simple. It’s marvelous.

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Chronic Illness and Marriage

Chronic illness and marriage is such a complicated combination that it’s rare to see a healthy spouse’s perspective on their partner’s chronic illness. I read Living With a Husband’s Chronic Illness Has a Bad Effect on His Wife’s Health eager for insight. I didn’t like the insight I got.

I genuinely wanted to read what this woman had to say, to see her difficult experiences and uncomfortable thoughts laid bare. My immediate response? To get defensive and write a long post about it. The gist: “How unfair that she’s taking her husband’s illness out on him. Does she realize he may be watching too much TV because he can’t do anything else? And, yes, that includes folding the laundry while watching.”

Instead of posting my inflamed response, I re-read the article many times over the week. , the author, knows she’s being unfair, but she’s exhausted and burnt out. She knows her husband isn’t to blame, but she doesn’t know where else to direct her anger and resentment. (She may not know that it’s possible to be too sick to fold laundry. I expect not many people can understand that unless they’ve lived it.)

Writing this article took tremendous bravery. Lewis admitted ugly truths about herself and her thoughts and published it anyway. She wrote honestly about a topic so painful and verboten that few people are candid about it (especially in print).

Of course I don’t like what she had to say. I have a chronic illness that’s had a tremendous impact on my husband. I’ve heard the saddest stories about how chronic illness destroys relationships. There’s an oft-cited statistic that the lifetime divorce rate is 75% for people with chronic illness (the overall lifetime divorce rate is 50%). There’s some question over whether this number is accurate, though experts agree that the divorce rate for the chronically ill is very high.

I’m working on an article for Migraine.com about managing migraine’s impact on a marriage. One of the suggestions is to talk about migraine’s affect on the relationship. I say, “The truth will probably hurt both of you. Talk about it anyway.” And then I read this article from a healthy caregiver and was hurt by truths from someone else’s relationship. This is emotionally fraught stuff.

I applaud for her courage and honesty. The difficulties of caring for a chronically ill spouse need to be acknowledged, even though many of those who are sick won’t like what we read.

Here are some resources for learning how to support a marriage in the face of chronic illness (I’ll add my Migraine.com piece when it’s published):

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Rotation Diet for Migraine or Headaches

The cauliflower debacle never really resolved. Even after I stopped eating cauliflower, I began reacting to other “safe” foods I’ve restricted my diet to the last six months. Despair was knocking, so I did what I always do when I need a sense of control — I began to research. Rotation diets were my target.

Rotation diets have come up frequently in my reading on dietary histamine. The idea, as I was introduced to it, is that you don’t eat the same food more than every four days. That’s the preschool version of rotation diets. A true rotation diet involves rotating food “families” every four days. Food families are either botanical families (for fruit, vegetables, grains, oils and herbs) or animal families (fish, bovines, swine, etc.).

The quickest way to understand how this works is this four-day rotation guide (page 7 of the PDF). The belief is that it takes four days for a food to completely clear your system, so that’s why you need to wait. Also, if someone reacts to multiple foods in the same family, they should consider eliminating the whole group (no goosefoot for me). The science behind rotation diets is slim, but I know what’s working for me.

I started it 10 days ago and am thrilled with the progress so far. My migraines are far less frequent and disabling than they’ve been the last couple months (and they’re easy to abort with triptans and/or Midrin). My diet is way more varied than it has been in the last 18 months. I have’t thrown caution to the wind — I reference lists of foods that contain histamine, tyramine and benzoates (the best lists I’ve found are in Dealing with Food Allergies by Janice Joneja). Instead of avoiding those foods completely, I choose carefully which ones I test.

The rotation diet is allowing me to eat foods that were never a regular part of my diet (mangoes, dandelion greens, persimmons, pomegranates). It’s helping me identify more definite migraine triggers (nuts, cabbage, quinoa, beets). I’m also figuring out how frequently I can eat a food and in what quantity without a reaction.

Wondering why I’m so excited about this strict diet? Here’s a recap of the past 18 months: Failsafe; chicken, white rice and oatmeal; feeding tube formula; six to 10 fruit and veg that I ate every single day. I don’t know how many different foods I’m able to eat now — that’s major progress!

Some people are on rotation diets indefinitely. I’m hopeful I’ll be able to figure out what my thresholds are for certain foods and not have to follow the diet rigidly for long. It doesn’t feel like a permanent change to me, more like another part of the diagnostic process. I’m more optimistic about this diet than I have been since I started my current migraine diet journey in January 2012.

Want to learn more? Here are the resources I’ve found most helpful:

I included migraine and headaches in the title because I’m using it for migraine, but I’ve read that it can help with chronic non-migraine headaches as well.

7/17/14: If you have true food allergies, please seek the guidance of a health professional before reintroducing foods in a rotation diet! I only have food intolerances/sensitivities (not allergies) and am not at risk of a life-threatening food reaction.

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I Relocated for Migraine & Found My Home

I moved for migraine and found my home in Phoenix.When I was in Seattle last summer, I wrote about my grief that migraine kept me from living in the city that felt like home to me. A few months later, when friends were visiting for Thanksgiving, I was hit with the realization that Phoenix had become my home. I continue to be surprised by just how much I like living here now.

Returning to Phoenix wasn’t in my plan until I made the connection between weather and the severity of my migraine attacks.* I only agreed to come back after Hart and I decided I would try to spend summers in Seattle. That’s not just because summer is hot and stormy in Phoenix, but because I felt like I needed that time in Seattle. Not anymore.

I often describe my relationship with Seattle as troubled romance. Despite how much I love her, we’re not compatible. In fact, with her cloudy skies and rain, Seattle can be downright cruel to someone with weather-triggered migraines. I’m pretty sure I loved her more than she loved me. We broke up years ago, but I always thought we’d get back together. I’ve officially moved on. (Though I wouldn’t be opposed to summer flings.)

I’m no longer angry that migraine forced me to give up my favorite city; I’m thrilled that it has led me to discover Phoenix anew. I don’t wish I lived anywhere else, though I’m still eager to travel and explore the world. I miss my friends elsewhere, but adore my loved ones here. Pine trees and lakes, which I definitely still need, are only a couple hours away (and Ponderosa bark smells like vanilla).

My emotional “home” in Seattle was on the sofa in front of the fireplace. I don’t have a special place like that in Phoenix. That bothered me until I realized I don’t need one. My entire house is my center, the whole city is my home. I no longer think “I want to go home” during a bad migraine; I’m already here.

*Moving didn’t reduce my migraines as much as I’d hoped when I first returned. See Relocating to Reduce Weather Triggers, on Migraine.com, for the full update.

(photo by John Stavely)