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The Eternal Asterisk of Chronic Illness

“Join us for dinner, I feel like cooking.”*
“Yes, get me a ticket for the baseball game.”*
“See you at yoga tomorrow.”*
*unless I’m too pained, dizzy or nauseated to do so

For about 10 years, this was the pattern whenever I’d make plans: My excitement would build as the dinner/concert/play/party approached. I’d spend the day resting, hoping to build energy reserves, and give myself a couple hours to shower and dress. The migraine pain/exhaustion/dizziness/nausea would persist despite my best efforts to supplicate it. I’d push myself and become distressed, and worry and panic would fuel the migraine. Angry, I’d crawl into bed (or sometimes collapse on the floor) and ask Hart to call our friends to cancel.

After years of disappointments — and lost friendships — from last-minute cancellations, I stopped making plans. The pattern was just too painful to repeat. I withdrew further into the isolation of chronic illness, dragging my husband in with me.

Moving back to Phoenix, where my friendships are long-established, I began making plans again, knowing my friends would understand if I had to cancel and that, if we had couple plans, they’d welcome Hart even if I couldn’t come. So now I make plans with an asterisk. I’ll come to your party, meet you for tea, go to a mini high school reunion, as long as I’m up for it. I still don’t like rescheduling and am reluctant to buy tickets for events that I’m not sure I can make, but I am no longer ashamed or embarrassed when I have to stay home.

Shame or guilt were only part of the problem. If I couldn’t go out, I felt like I was letting migraine win. Like my default mode was healthy and deviance was an anomaly. Truth is, my default mode is migraine (“chronic” might have been the first clue). I’d been too stubborn to see and too ashamed to admit that I was too sick to live a “normal” life. Coping with chronic illness isn’t a matter of winning or losing, but of being honest with myself. And that may be the biggest challenge of all.

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Leaning on Your Support System

“People cry, not because they’re weak. It’s because they’ve been strong too long.” The National Headache Foundation posted that on Facebook last week, right when I was wondering how much more I could possibly endure. I’d had five weeks of nearly perpetual migraine and I was well beyond the end of my wits.

Sunday night I had an epic crying session. I wanted out of this body, this cage. I was tired of having to fight to do the smallest tasks, like eating or showering. I didn’t want be sick anymore. I howled and shook with frustration and fear for hours. My sweet husband held me and told me that even if I was too exhausted to fight, he was not. He told me not to underestimate my own strength. He told me that even if my life is harder than it has any right to be, it is a life worth living. With his kind words and solid grasp, Hart reignited my courage and determination.

My illness has changed Hart’s life nearly as much as it has altered mine. He married an equal, yet now finds himself supporting us financially, running our household and taking care of me. Instead of spending evenings at concerts, movies or with friends, he makes popcorn and we watch Netflix. I try to minimize the impact of my illness on him. I’m honest with him about how I feel, but when I’m in ruts like I was last week, I tend to stop talking about it. Since I isolate myself from everyone else when the migraines are bad, Hart’s my lifeline.

Sunday’s emotional implosion was not only because I’d been strong too long; it was because I did not allow anyone else to ease the burden. I don’t know how I will overcome the desire to isolate myself when I am sick, but I can’t keep trying to manage this life on my own. Though strong-willed is one of my defining characteristics, no one can carry the weight of chronic, debilitating illness alone.

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You’re Doing Everything Right

“You’re doing everything right,” a friend wrote to me two years ago when my migraines were at their very worst. That sentenced has sustained me through many difficult patches. It has been so helpful for me that I want to tell you that you, too, are doing everything right.

The next 10 days afford many opportunities to talk with (hopefully) well-intentioned friends, family or co-workers who will tell you about the person they know whose horrible migraines were cured with a sun lamp/energy cleansing/daily enema. Maybe you’ll be lucky enough to encounter someone who tells you that all you need to do is think positive thoughts and your health will improve. Before you explode, try to take some deep breaths and remind yourself that this person probably means well but doesn’t understand the magnitude of your illness.

Then, instead of jumping on the guilt and self-doubt train that awaits folks with chronic illness (“I’m letting people down” or “I need to seek new treatments more aggressively”), remember that you are doing everything right. That’s really the only truth that matters. Whether or not you live up to someone else’s judgments, real or perceived, is irrelevant. Maybe you cancel plans or show up at the party without the requested potluck dish. So what. As long as you get up every day and try to live your life around your illness, you are doing everything just right.

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Mindfulness & Meditation: An Introduction

Finally! Here’s an explanation of mindfulness meditation and the practice of mindfulness in general. The post is long but worth sticking with. (I think so at least!)

Mindfulness = Paying Attention
Mindfulness is captured by simple terms:

  • Paying attention
  • Being, not doing
  • Present moment awareness
  • Being “here”

Easy ideas, complicated concepts. The ubiquity of multitasking is an excellent example of the challenges. Home, work, play, school, friends, family… There’s so much to think about and it all fights for attention. With our minds everywhere at once, they are often far from our actual lives.

The UCSD Center for Mindfulness, part of the medical school’s psychiatry department, gives this definition:

[Mindfulness] is a quality, which human beings already have, but they have usually not been advised that they have it, that it is valuable, or that it can be cultivated. Mindfulness is the awareness that is not thinking (but that which is aware of thinking, as well as aware of each of the other ways we experience the sensory world, i.e., seeing, hearing, tasting, smelling, feeling through the body).

Mindfulness is non-judgmental and open-hearted (friendly and inviting of whatever arises in awareness). It is cultivated by paying attention on purpose, deeply, and without judgment to whatever arises in the present moment, either inside or outside of us. By intentionally practicing mindfulness, deliberately paying more careful moment-to-moment attention, individuals can live more fully and less on “automatic pilot,” thus, being more present for their own lives.

How is mindfulness part of meditation?
Meditation can be broken into two basic categories: Concentration and mindfulness. Until my recent introduction to mindfulness, I’d always thought of meditation as concentrating on clearing one’s mind or focusing on a narrow idea. To me, mindfulness seems the opposite.

What I love about Western medicine’s approach to mindfulness meditation is the focus on becoming aware of your body, to be rooted in what you are experiencing. Having felt that my body has “betrayed” by giving me migraine and chronic daily headache, I am amazed by all the good it does.

That said, mindfulness meditation also involves paying attention to negative sensations (i.e. pain). I’ve long been a fan of burying my nose in a book to distract myself. Paying attention to the pain, nausea and vertigo is indescribably difficult. I get frustrated nearly every time. Tears and yelling are not uncommon. But I keep practicing and, like with any knew skill, it becomes a little easier each time.

This approach fully acknowledges that the mind wanders. In fact, one of the CDs I use says that the nature of the mind is to wander. Thinking of it this way makes it easier to let the thoughts go and return to the practice. There’s a non-judgmental quality to it and one that I, with practice, am learning to accept.

Think it’s not for you? Think again.
If I can do it, anyone can. Seriously. I have only be involved with it for two months, but my health has already benefited. The definition I provide from the UCSD Center for Mindfulness is rather academic, but my experience hasn’t been. You’ve probably caught on by now that practice is key. I started with, and still use, a 20-minute CD segment. I feel my body relax as I progress and am always surprised when it ends.

The point of all this is not “enlightenment,” but better health. I now notice when I start to feel flushed, which is usually the beginning of a crash. Sometimes I push, but sometimes I stop. In the airport recently, the rigmarole, crowds and general feeling of being rushed got to me. All I did was sit down and breathe and felt better within 10 minutes. I also thought of a small step I could take to ensure I stayed calm: I could pre-board. Boy, did that help.

Want to join me?
I already know that mindfulness will become an integral part of my treatment. As such, it will likely become a main topic on The Daily Headache. You can follow along with my experience and may even want to join me. I’d love to get a dialog going where we can learn from each other.

Resources
I’ve found some websites with good introductions to mindfulness and mindfulness meditation. Some get kind of abstract and spiritual sounding, but try to think of how it can apply to your health and self-care. Following links about mindfulness-based stress reduction (MBSR) may be helpful.

For books, I recommend starting with Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness. Basically a book version of UMass’s Stress Reduction Clinic’s program, it takes a strong Western approach. It reads like the self-help book it is, yet has great information. You’ll help support The Daily Headache if you buy it through the link above or you can probably get it at your library.

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Looking Beyond Illness: Adding Up the Smallest Joys

A few smiles a day can make a big difference in how we perceive pain — and our lives. This occurred to me today as I bought Spike Lee water. (That’s sparkling water to anyone outside my household.)

I was taken aback when my then six-year-old niece asked me for her Spike Lee shirt a few years ago. My sister translated: spikelee means sparkly. I was so amused that the phrase became a fixture of my vocabulary. “Give me sharp knife,” said in a serious and clipped tone, is another favorite from when my nephew was three.

I drink sparkling water and use sharp knives every day. And I remember these funny stories. I also think of the kids I love so much and who make me laugh, intentionally or not. These inside jokes aren’t that funny to anyone else, but they mean the world to me.

Remembrances are only part of the picture. Consciously thinking about the happiness in every day may be the best way to revive joy. I know a woman with bipolar disorder and migraine who writes down the good parts of each day before she goes to bed at night. This reminds her regularly how rich her life is despite illness.

As the migraine that’s been coming and going since Thursday threatened to consume me, I struggled to see the positive aspects of today. Let’s see, I was only 10 minutes late to my appointment this morning, biofeedback kept my migraine at bay long enough to go grocery shopping, I made myself laugh by deciding our house really needs a periscope.

So many cliches say to enjoy the little things in life. A good sentiment — one that can seem impossible to put into practice. The items on my list of what’s good today border on minutia. Had I not seriously thought about and recorded them, any happiness would be lost in a day dominated by pain and exhaustion.

Now, as the pain grows more assertive, I’m grateful knowing I did something more than have a migraine today. I was productive and laughed aloud. These nearly forgotten pieces of each day come together, creating a quilt to wrap around myself when I most need reassurance that my life is beautiful and fulfilling.