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Making Room for Restorative Activities

Baking. Attending yoga classes. Dancing to live music. Traveling with Hart. These disparate activities have a vital common thread: they restore me. How bad the migraines are, money, time, concert schedules, and even which migraine diet I’m on influence how often I do each thing, but at least one of these activities has to be a constant in my life for me to remain emotionally stable. They’re so crucial that I prioritize them unwittingly. Until this summer.

After I went off antidepressants, I was feeling off-kilter. I kept trying to pinpoint why. Was it because I’d stopped the drugs? Was it the weather? Was I homesick? Missing Hart? Bored? Lonely? Grieving my migraine losses? I finally figured it out this past week when, after returning home from Seattle, I went back to yoga for the first time since April and felt a deep calm that’s been elusive: I’ve barely engaged in any of my restorative activities in months.

How I Got Off-Kilter
In April, my yoga studio moved to a newly remodeled building. Even though they used eco-friendly materials to create the beautiful new space, the outgassing was too overwhelming for this sensitive migraineur. I looked for other studios, but couldn’t find another within a 30-minute drive that had frequent gentle classes.

Part of the reason I love to bake is that I love to eat baked goods. There are no “safe” baked goods on my current diet, so I haven’t been baking much. I still bake for others occasionally, but instead of being a relaxing endeavor, it feels fraught with danger.

Funk, world music, and jam bands are pretty rare occurrences in the Phoenix area. Having a band in town on a night I feel up to dancing and playing early enough it won’t wreck my migraine-dictated sleep schedule is even rarer. Hart and I have traveled to shows and festivals in the past, but that’s on hold while we’re launching TheraSpecs.

In fact, all travel is on hold while we’re living on an entrepreneur’s shoestring budget and dedicating all our time to TheraSpecs. Hart did spend a great week with me in Seattle, which was our first vacation in a couple years. Yay for frequent flier miles and friends who let us stay at their houses!

Prioritizing Rejuvenation
When I was desperately ill, I managed to work at least one of my necessary activities into my life. Now that I’m feeling better and more functional in years, I let them slide. This seemed ironic at first, though it makes sense upon further reflection — I’m no longer constantly craving rejuvenation. But, whether I’m aware of it or not, I still desperately need it. In fact, it may be even more important now that I no longer focus all my energy and attention on taking care of myself.

Unless tickets for this weekend’s Phish shows in Colorado fall out of the sky, yoga will be my revitalizer for the foreseeable future. I’m hoping to rejuvenate and get back into shape. Thankfully, the yoga studio has aired out enough to no longer be a migraine trigger.

What About You?
What activities restore you? Does your headache disorder interfere with them? Do you have to make time for them or do you do so without even realizing it?

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The Power & Strength of Vulnerability, Even in Illness

Just the thought of being vulnerable makes most people recoil. Open yourself  emotionally to the whims of others? No, thank you! But when you’re sick, you have no choice. You must rely on others to take care of you or the responsibilities you cannot deal with; you have to repeatedly reveal your deepest agonies to health care providers (who may not be understanding) and hope they’ll give you the treatment you need; you have to let others see you at your worst, when you have absolutely no strength to keep up airs.

The vulnerability inherent in illness feels like a weakness, when the truth is actually the exact opposite. Vulnerability is a sign of strength and courage, as well as a powerful tool that allows us to connect deeply to others and live wholeheartedly, according to the research of social work professor Dr. Brené Brown. Her TED talks provide an inspiring look at vulnerability and shame (another major emotional factor in chronic illness).

I highly recommend watching both. In The Power of Vulnerability, Brown discusses her research and personal aversion to vulnerability, as well as how important vulnerability is living fully. Listening to Shame addresses the power of vulnerability as well, but looks at the epidemic of shame in our culture and the difference between guilt and shame — an important distinction for those of us with chronic illness.

Brown’s talks aren’t proscriptive, but provide insight into the power and strength of vulnerability. Although I didn’t realize it, I’ve been applying the principles she discusses as I’ve become increasingly open about the true impact of chronic migraine on my life. In letting people see me when I was at my sickest, in reaching out for help when Hart and I were alone in a new city, in not hiding the magnitude of my pain or degree of disability from friends, my connections to others are so much deeper and richer than in all the years I tried desperately to pretend I wasn’t as sick as I am.

By trying to hide chronic migraine, I was putting a wall between myself and anyone who tried to connect with me. Because of my shame over being sick, I wasn’t living honestly or authentically. No one could know me, not even myself. It’s not coincidental that I lost my sense of identity at the same time I was attempting to be invulnerable.

Vulnerability is frightening for everyone. To be open about an illness that is heavily stigmatized and often dismissed as inconsequential or made up is even more terrifying. And, yet, Brené Brown’s research shows that being vulnerable is the key to living wholeheartedly and authentically. It is also a sign of tremendous strength. As she says in her talk on shame, “vulnerability is our most accurate measurement of courage.”

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What Matters

It doesn’t matter if we do things right, “doesn’t matter if we do things according to the book or what we expect or what others expect. What matters is the quality of heart and integrity we bring to what we do. . . . What matters is remembering that we care about as many moments of our life as possible.” -Tara Brach

So often I feel like I’m failing. Failing my family and friends by not keeping in touch, failing my husband by not being the equal partner I signed up to be, failing the folks I write for at Migraine.com by not submitting more posts. Failing you by not writing more often, by not responding to comments, by not updating my blogroll. Failing myself by not having a career, by not being able to support myself financially, by not doing more activities that nourish my soul.

The funny thing about these “failures” is that they are not my fault. I would participate in the world if migraine and chronic daily headache did not drag me down the way they do. This is not to say life would be cake and balloons if I didn’t have migraine; I’d still have challenges and frustrations, but chronic illness has hijacked my personality. I am not the unproductive, antisocial being that illness has turned me into. And so I fret. Fret about the difference between who I am fundamentally and how I behave because of migraine.

What if, instead of dwelling on what I cannot achieve, I view my life the way Tara Brach describes? What if I see the quality of heart and integrity I bring to everything I do, the intense focus I give to even the most mundane day-to-day tasks? Then I am not failing at all. In fact, I am overflowing with love and purpose and gratitude.

What matters to you?

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Please Read “An Open Letter to People Without Migraine”

Migraine, chronic or not, has a profound impact on those who experience it, yet even well-meaning family, friends, coworkers and health care professionals often think of it as “just a headache.” An Open Letter to People Without Migraine was intended for my personal Facebook page — until I realized the message was too crucial to limit to a private sphere and decided it belonged on Migraine.com. It begins:

I have a migraine attack 28 days a month. I tell you this not for pity or shock value, but to beg for a smidgen of your comprehension. I want you to understand that migraine is not a bad headache, but a neurological disorder that affects every system of the body. You see, the unbearable head pain that migraine is known for is only one symptom of the illness.

For the rest of the post, which may be the most important piece I’ve ever written, please see An Open Letter to People Without Migraine and share accordingly.

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TheraSpecs FL-41 Glasses Now Available

TheraSpecs Logo

TheraSpecs, the company Hart and I have started, is now open for business selling precision-tinted therapeutic glasses! Clinical research shows they can reduce the frequency of migraine attacks, relieve sensitivity to light during a migraine, protect you from light-triggered migraines (especially from fluorescent lights and CFLs), and reduce headaches and eyestrain. They are available in both an indoor tint and a darker polarized tint for outdoor use.

Learn more or order your own pair at TheraSpecs.com.