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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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Soothing Sneaky Worries With Mindfulness

Friday and Saturday are crammed full of sessions at American Headache Society symposium, Sunday is the American Headache & Migraine Association patient conference. I’ve been fretting for days about how I’m going to feel over the weekend and which sessions I’ll be able to attend.

The worrying was initially disguised as planning:

  • Which talks do I most want to hear?
  • Should I conserve energy for the patient conference or go all out at the symposium?
  • Do I go to the Saturday night cocktail hour and mingle or rest?

Those are all reasonable questions but they devolved quickly into worrying:

  • I haven’t been able to get out of the house before 1 p.m. in weeks, how can I expect to make it to the meetings?
  • Will I even have enough stamina to commit to a few hours Friday and Saturday and all day Sunday?
  • The forecast shows rain for the weekend, will I be able to attend anything?
  • I hope I don’t waste the money I spent to attend the symposium?
  • Will I even be coherent when I meet people at the patient conference?
  • Will I even be able to stand at the patient conference?

Stressing out now is not going to improve my chances of having a successful weekend, so I’m practicing mindfulness to keep myself calm and grounded. When I catch my mind churning, I remind myself that I can’t know what will happen this weekend until it arrives and that right now is the only moment that matters. I bring myself back to the present, close my eyes, and breathe for a few minutes.

This strategy kept me from getting worked up yesterday and I’m determined to keep practicing mindfulness throughout the week. Maybe reducing my stress will give me a better chance at being able to attend all the sessions I want to. Maybe not. At least I’ll know I attempted to live in each day this week rather than giving my moments over to fears about something I cannot control.

(And I hope that committing to a mindfulness practice publicly will help me stick with it.)

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Revamping Traditions to Reduce Holiday Stress

If your headache disorder tends to flare up during the holidays or you get so stressed about getting everything done that you wind up harming your health, it may be time to rethink your holiday traditions. Start planning now to scale back the stress and fatigue of holidays while still honoring your most important traditions so you can join in the revelry instead of curling up alone in a dark room.

Read my suggestions in Holiday Traditions on Migraine.com.

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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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Pacing for the American Headache Society Symposium

The American Headache Society’s annual symposium is in Scottsdale later this week and I’ll be attending for the first time. Or to be accurate, I’m planning to attend the symposium as long as I’m not knocked out by migraine attacks. There’s a world of difference between attending and planning to attend. A difference you’d think I’d fully grasp after all these years with debilitating chronic migraine. Nope.

I imagined myself waking up early and attending the meeting sessions all day Friday and Saturday. Never mind that sessions begin at 8 a.m., two hours before I usually wake up. Never mind that feeling well enough to be out of the house for three hours on any given day is cause for celebration; doing so two days in a row is nearly unheard of. Never mind that I rarely shower before going out because it depletes my energy (this is a little tricky considering that my almost-nightly migraine attacks include night sweats — I can cope if I’m going somewhere anonymously, but am sensitive about it when I’m around people I know or want to make a good impression).

Although the idealized schedule of events rarely comes to fruition, I don’t usually remember that until I’m over committed. This time I was clever enough to see it a week before the event takes place. I’ve gone through the symposium schedule and made a list of sessions I most want to attend and have narrowed it down to a couple hours each day plus Thursday set-up for the TheraSpecs exhibit and dinner with Migraine.com folks. Ideally, I’ll take over the booth for short stints Friday and Saturday so Hart can catch his breath.

I have no idea how much of the conference I’ll be able to attend or if I’ll be of much help to Hart. Still, I’m patting myself on the back for recognizing my limitations (though I’m by no means happy about them) and creating a realistic plan. Starting off with reasonable expectations is far more promising than my usual approach of hitting the ground running, then crashing and knocking myself out for the rest of the weekend. If I can’t make it to all that I have planned, I won’t be blaming myself for overexerting and making myself sick.

Wish me luck. I hope to gather lots of good information to share with you. And I’m super excited to finally meet Teri Robert, Ellen Schnakenberg and Diana Lee in person!