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No Treatment is Guaranteed Forever (But I Really Hope it Lasts)

Like an athlete who knows all the clichés to tell the press, I say all the right things about my recent migraine reprieve. The improvement may not last… I’m taking it day by day… No treatment is guaranteed to work forever… Sometimes I even believe myself.

When my migraine pain hit a level 6 last week, I didn’t panic. I still have migraines most days and even though the pain rarely even hits a 5, I know that more painful migraines could always resurface. I can handle it. For a day. After that level 6 pain was followed by three more days with level 5 pain, I officially freaked out.

Days when level 6 pain is a cause for celebration could come again. (Writing that sentence made my stomach turn.) I got through it before and I will once again. But I really, really, really don’t want to have to.

Last week’s migraines were likely hormonal, so they’re probably not here to stay. This is somewhat reassuring, but I couldn’t rest until the stretch of more severe migraines let up. Even now, after a couple days with little pain, fatigue or brain fog, I’m still more nervous than I was two weeks ago.

It’s not that I’m obsessing over future uncertainties, but I’m wary of making plans. I have some great ideas for TheraSpecs that require a long-term commitment of physical and mental energy. I’m also considering moderating Migraine.com’s forums. There’s no problem with doing either one right now, but what about three months from now? How about next year? Severe daily migraine attacks were the story for so long that it’s hard to believe they won’t return.

I don’t ask for much. I just want work to consistently, keep my household fed and running, and have fun with my loved ones. Having a taste of that life has been so amazing that I’m walking around like someone newly in love. Back to the (true) clichés, I’m grateful for every day, living this life to the fullest, focusing on the now, enjoying life in the moment. But I can’t deny that I will be devastated when (if?) it stops.

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Chronic Migraine Time Management… and More Self-Doubt

While time management for accomplishing daily tasks on schedule despite chronic migraine still eludes me, I’ve found a system that works for me for big activities, like a party, travel, or even attending an important work function with Hart. I have to budget my time very carefully. I plan out everything I need to do, break it down into small tasks I can reasonably expect accomplish each day, and allow for a few extra days in case I have to take a day off. I always give myself way more time than I think I need and work in time to rest as well. I focus all my energy on these specific tasks and set aside everything non-essential.

I’ve just arrived in Seattle where I’m house sitting for the rest of the summer to get away from Phoenix’s monsoon season. Getting here has been convoluted. My mom, who lives outside of Portland, OR, is lending me her car this summer. Monday I flew there and spent the evening with my family. Tuesday I drove to Redmond, WA, to stay the night with a high school friend. Wednesday I picked up groceries (I’m still on an über strict diet that requires making all my food super fresh and freezing it) and moved to the place I’m house sitting for three weeks. This was all after spending last Thursday to Saturday in Flagstaff, AZ. I did some packing for Seattle before Flagstaff, then dedicated Sunday to finishing that up.

A healthy, energetic person wouldn’t find this schedule taxing; I found it stressful and exhausting. I’m more than a little embarrassed about that. Most of my years with chronic migraine, I have pushed myself constantly, pretending that I had a healthy body that could withstand a normal schedule. In admitting that I don’t and I can’t, I’m able to manage life and cope with the migraine attacks a lot better. I am mostly happy with it in my day-to-day life, but writing about it publicly is uncomfortable.

Admitting how much effort I expend to accomplish so little is humiliating. I hear the voices of all the people who have told countless migraineurs (and those with many other chronic illnesses, I’m sure) that we’d get better if we only tried harder or worked at it more. Despite knowing that method is not only fruitless, but counterproductive for me (and probably for most people with chronic illness), I still feel ashamed to share the unimpressive minutia of my daily life. I know intellectually these naysayers are wrong — and I’m even beginning to believe this in my heart — but I nonetheless feel defective in the eyes of society.

Being sick is really hard work. Those who have never had an extended illness have no idea how difficult it is. And, sadly, many of them are unwilling or unable to step outside their experience to consider what we go through. Still, those are the voices that haunt me as I work my butt of to manage chronic migraine. I want to be well and I want to be a productive member of society. It’s infuriating to know that others refuse to see this and instead pass judgement, assuming their way is the only right way, and that I must be doing something wrong if I’m not getting better.

I’m not one to care much what other people think… unless I fear there is truth to what they believe. Rationally I know they are wrong, but I can’t seem to shake my own doubt. I’m not defective or lazy and I want others to stop thinking that I am. Because if they don’t believe it, maybe I won’t either.

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Learning to Listen & Respond to Your Body’s Needs

I’ve done what journalists call burying the lede in this post. If you want get to the heart of body scans, skip on over to Learning to Listen to Your Body, my latest post on Migraine.com. To understand how listening to your body relates to your life, migraine, chronic illness, and society, keep reading.

Spending time with mothers of young children recently, I’ve been struck by how in tune they are with their children’s needs. Even though the child can’t speak, their mothers know that that a certain squirm means “let me down,” while another indicates a dirty diaper, that a particular squeak means the child is hungry.

Imagine being that in tune with your own body. Think how valuable that knowledge could mean for someone with migraine, whether episodic or chronic, or any other illness, for that matter. If you can identify early warning signs of an impending attack or downturn, you can take appropriate medications or avoid overtaxing yourself, resting when needed rather than only when you’re completely exhausted.

This knowledge is particularly valuable in migraine, since the first phase of an attack, called prodrome, causes physiological changes in the body that many of us are unaware of. Some people yawn a lot, feel tooth sensitivity, have a creative surge, get hyperexcited or depressed, or a host of other symptoms. Unless you’re aware of the minute changes in your body, you may not know a migraine is coming on before it whacks you over the head. Knowing your personal prodrome symptoms are crucial, since migraine abortive medications are more effective the earlier in an attack you can take them.

We are all capable of being as aware of our own bodies’ needs as a parent is of their child’s needs. Living in a culture that prizes busyness and activity over any downtime most of us have never learned how to listen to our bodies or take care of ourselves. When we get sick, we continue ignoring what our bodies have to say — sometimes as a coping mechanism, sometimes because that’s the only way we know how to function. We do so at our own peril and, I fear, ultimately worsen the symptoms of illness.

Fortunately, listening to our bodies is a skill we can learn, just as we can learn to play the piano or bake cookies. Meditating is one way I’ve learned to listen to my body. A body scan, which can be part of a meditation practice or done on its own, is an excellent, clear-cut method for learning to hear what your body is telling you. Learning to Listen to Your Body, my latest article for Migraine.com, walks you through a short body scan and recommends some resources for a guided body scan. Like mastering any skill, it takes practice, but the reward is worth the effort.

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Pushing Through Migraine Attacks… More Harm Than Good?

What would happen if, as soon as I noticed a migraine coming on, I took meds and rested instead of pushing until I absolutely can’t do another thing and I’m beyond exhausted before sitting or lying down? “I’d never get anything done,” is my immediate response, and I’m guessing most chronic migraineurs would think the same thing. But what if the behavior I see as helping me cope with chronic migraine — pushing myself — is actually making my health worse?

What if resting at the first warning of a migraine would reduce the severity of that migraine attack? What if pushing myself to the brink actually makes the migraine attack worse? And beyond individual migraine attacks, what if my habit of constantly pushing myself to severe fatigue compromises my body and health in such a way that makes me have more frequent migraine attacks?

These are some of the thoughts floating in my head thanks to therapy and the article about validating pain that I wrote about last week. I have no answers, but asking these hard questions feels like a step in the right direction.

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Is it possible to validate one’s pain and still live a life beyond bed when you’re chronic?

“Short and simple, Validating Your Pain is the First Step to Getting Stronger by Danielle LaPorte is astonishingly powerful in its approach to pain,” I wrote yesterday. My first instinct was to tell you it is an absolutely must-read article for anyone with chronic illness. I even wrote, “Read it now. Right now. Really.” Then I let the ideas simmer for a while and began to question how they could realistically apply given the constraints of chronic illness and pain.

Head on over and read the post. It’ll only take a couple minutes and the ideas are intriguing. Then come back to read what I’m thinking about it and share your impressions.

I love, love, love the thought that people with chronic migraine, including me, might stop denying the reality and severity of this illness to everyone around them, even themselves. Pushing through despite our debilitating symptoms, pretending we feel better than we do, brushing off others’ concerns. . . These strategies seem like the only way to survive, to have some semblance of a life while also having chronic migraine. But they also lock us in a battle against ourselves, where we’re constantly denying how we truly feel physically and emotionally.

“Validating your pain is the first step to sanity, strength, and healing,” LaPorte writes. My therapist has expressed a similar message. I’m listening. And I really want to buy into what they’re saying. Yet, I cannot help but wonder how to follow their lead and still get anything done. Three of LaPorte’s points tied my mind in contradicting thoughts of “That would be amazing” and “How is that possible?” They are:

Endurance can be a very unwise choice. As inevitable as emotional and physical suffering is, it doesn’t always serve to make us stronger — sometimes it just wears you right down. Sometimes, the test of strength is to say “This isn’t working,” the millisecond it’s not working.

Believe your pain. It’s not a friend you want to invite over, but when it does show up, it always — always — brings you precious information about what’s best for you.

Dare to be high maintenance. I bet you’re invincible in many areas of your life. But when you need it, ask for special treatment.

It is a good time to note that LaPorte does not have chronic pain, but extreme sensitivity to dental work. She’s talking about validating her pain a couple times a year. Applying her ideas to the daily life of chronic illness is so seductive. Imagine recognizing (and stopping) every time you’re wearing yourself down by trying to push through, listening to your body’s signals and resting accordingly, asking for special treatment. Sounds blissful. And utterly inconceivable, a life-sentence of confining yourself to bed.

Still, I want to believe that these concepts can apply to some degree and improve life with chronic migraine. I want to validate my pain and listen to my body, ask for help when I need it. For LaPorte, honoring her body and her needs leads to an effective treatment for her pain. Many chronic migraineurs don’t have the luxury of surefire way to manage their pain, nausea, dizziness, vomiting, photophobia, and numerous other migraine symptoms. Admitting our pain doesn’t get us a numbing agent, it just takes us away from living our lives.