Chronic Migraine, Coping

Goals, Dreams and Chronic Migraine

A headache specialist who also has migraine wrote an article about the importance of setting goals even if you’re mired in chronic migraine. I can’t find the article to share with you, but remember the gist being that having goals keeps you from succumbing to illness and gives you a reason to keep trying to improve your health. Basically, they give you the will to live.

I remember feeling defeated when I read that article a year or two ago. My goals were sitting on a shelf, put aside when getting out of bed and feeding myself were all I could manage in a day. They did not inspire me, but filled me with despair over all I had already failed to accomplish and everything it seemed I would never be able to do. Even though I felt better than I had in at least five years, I was still so sick. Goals did not feel like inspiration, but a reminder of defeat. What was the point in having goals, I wondered, when migraine demanded all my energy and attention?

That despair was temporary. Try as I might to pretend I had no dreams beyond finding an effective migraine treatment, my ambitions cannot be sublimated. As frustrating as it was to believe my dreams would never be fulfilled, it was even worse to imagine that my only role in the world was sitting on the couch in pain. The sentiment of that headache specialist whose name I cannot remember in the article whose location I cannot find were so true. Having goals keeps me believing that migraine will not forever dominate my life and that, even if it does, I will somehow contribute meaningfully to society. When my life feels unbearably small and worthless, these aspirations give me a reason to strive, even if getting out of bed will be my biggest accomplishment of a day (or week or month).

While the previous sentence would be a fine place to end this post, a reader asked me to share my goals with you. She said that reading about my aspirations inspires her to keep dreaming and believe in the possibility of fulfilling goals despite illness. Doing so has taken me months. Thinking privately about everything I hope to achieve in my life is hard enough with chronic migraine grinding me down. I have often felt like I would never even be able to begin pursuing my goals, much less achieve them. Declaring these dreams publicly feels like I’m committing myself to them, and that if I do not attain the goals I share, I will have failed. Because I know at least one person will benefit from my sharing, I will plunge in and trust that you will understand if I’m never well enough to follow through.

*Deep breath* OK, here goes.

Help people with the emotional turmoil of chronic migraine. In the last year, I’ve come to believe that my experience with and understanding of the emotions of chronic migraine is the most important knowledge I can share with other migraineurs. How I plan to do this, whether through writing, coaching, or even getting a counseling degree, depends on the day. Writing will likely prevail since it reaches the largest audience and I express ideas best in writing. I’m already doing this to some extent on The Daily Headache and, but I want to reach even more people.

Help non-migraineurs understand how serious and debilitating this condition can be. I’ve begun to see this as an extension of the previous goal. The facts about migraine are astonishing (my headache specialist shared some with me yesterday that literally made my jaw drop), but tugging at heartstrings is often more effective than facts. I want to write about migraine in a way that will touch those who believe migraine is just a headache and publish those articles in places that aren’t specifically focused on migraine (like Real Simple and O magazine for starters).

Write a book about couples’ communication and chronic illness. Since my background is in human communication (with a love of interpersonal communication), this screams “dissertation” to me. While the coursework for a PhD would be wonderful, the thought of negotiating university politics and slogging through comprehensive exams and writing with a committee makes me want to scream. Still, I’d learn so much from published research along the way and could gather excellent data for the book. I could massively edit the academic dissertation to make it palatable for the general public. Or I could skip the school stuff and do it myself. Compared to getting a PhD, writing a book looks easy.

Teach people how to bake. There are two “tracks” I’m thinking of: how to make typical boxed goods from scratch with little extra effort and how to make sublime cookies. The first is for folks who think baking is too hard. I’d teach the very basics of making cookies, cakes, and brownies, plus the tricks to make them turn out (like that over mixing after you add flour makes for tough cookies). Nothing overwhelming or complicated, just easy recipes and simple steps. Sublime is where the involved, time-consuming (though not necessarily complicated) recipes come in. These cookies are so good that even people who don’t like sweets are taken in by their delicious addictiveness (like my chocolate chip cookies).

Cook for people. “Love people, cook them tasty food” says the Penzey’s bumper sticker stuck to my recipe notebook. It is an eloquent summary of one of my life philosophies. I imagine it mostly as bartering, as I’m doing with a friend who is working part-time for TheraSpecs. She hates to cook and has a family to feed. I love to cook and want to do something when I have energy but am mentally foggy. I recently spent 28 hours over five days and made at least six weeks of dinners for her family. It was so much fun and I’m happy to know I’m nourishing the bellies and taste buds of people I love. Unfortunately, a week later I’m still paying for all that time on my feet and cheating on my diet as I tested recipes.

How heartening it is to see that I’m already making progress on some of these goals. Until writing them down just now, they all felt big and nebulous and way out of reach given my current health. Big goals are made up of tiny steps after all. I’ve been working toward my dreams without even realizing it. Migraine isn’t holding me back, just slowing me down.

Coping, Favorites, Mental Health

The Guilt of Letting Myself Down Over and Over

Guilt and I spend a lot of time together. It is my closest friend, a friend I happen to despise. This is one bad relationship I don’t think will ever end. I feel guilty when I let anyone down, especially when that person is me. Multiple times a day I make promises to myself and multiple times a day I break those promises.

Lists are essentially promises to oneself. You plan to do each item on the list: make a phone call, clean the kitchen, have dinner with friends, pick up the house, etc. Organized folks will assign realistic dates to tasks. I give deadlines too; usually leaving 48 hours to accomplish all 12 items. Then berate myself for not taking care of them.

I’ve always had high expectations for myself. Even after all these years of migraine and chronic daily headache impeding my success, I think I can do more than I’m physically capable of. I believe I should be able to do everything I want or need to do, even without realistic parameters. Thus starts the cycle of self-blame and guilt.

Letting myself down — and feeling horrible about it — day after day haunts me. Being self-critical is my way of life. I don’t think being hard on myself is the only problem here, but don’t know what else is at work.

Triage is more important than source-sleuthing for now. Not calling myself a flake is probably a good start! After that I’m stuck. I can’t stop setting goals; that would be giving up on my life and giving in to migraine and chronic daily headache. Where is the line between labeling something as unrealistic or as a goal to strive for?

Prioritizing is the most obvious solution. Even that is confusing. How to prioritize when I might not get to the priorities? How do I choose what I really need to do? When do I choose what I want to do over what I need to do?

Learning to let go when I can’t follow through with myself seems helpful — and impossible. Cognitive behavioral therapy, perhaps the ideal solution, isn’t going to make it into my schedule anytime soon. Any suggestions?

photo credit: Raul_d50

Coping, Treatment

The Thief and Grief

I feel self-indulgent talking about this considering yesterday’s reminder of the horrors in the world, but I need to share some of the grief of living with chronic or severe headaches.

I’ve had a nagging feeling for the last month that my version of yoga wasn’t working with my nerve stimulator. The stimulator has a battery box below my collarbone with wires tunneled under the skin over my shoulder, up the neck and to the back of my head. If there is too much stress on the wires, there’s a chance the wires could slip out of place, making the device useless.

With this fear in mind, I worked with an instructor to find poses that we hoped wouldn’t cause problems. In Tuesday night’s class, I could feel the wires pulling and I left worried that this might be the end of yoga. During class today, using even more modified poses, I accepted that class is too risky. I cried so hard, I had to leave. My tears were for losing yoga, but also for the greater losses of this disease.

Headaches steal so much of your life. The list is long, but includes jobs, relationships, having children, self-respect, ambition and identity. Yoga seems minor in comparison, but it is part of my identity. Class is the only time I focus on my body not in pain, but in activity. I don’t feel broken, but am strong and capable. That’s valuable enough that I was willing to risk the only treatment reduces my pain.

After Tuesday night’s class, I was angry and inviting others on some headache forums to share their losses. I won’t name or link to the forums because it would violate the members’ trust, but the responses are heartbreaking.

If you’re comfortable sharing your losses here, please email me at kerrie at thedailyheadache dot com. I’ll post them without identifying you. You might help others accept their losses or explain to their family and friends what this is like. A collective list will make us all feel a little less vulnerable.