Thursday, July 24, 2008

choices, decisions and resentment

Having such chronic migraines means, at this point in my life, I'm living with a lot of resentment.

I've talked before about the resentment I feel for my disease itself. Migraines have stolen much from me, and I resent that this disease has taken up so much space in my life. Usually I can use this resentment and anger to keep me going on my path toward getting better.

But I find other resentment in my life as well, which I don't talk about much. In the spirit of honesty and sharing with my readers, however, I'll talk about it now. And that is the resentment I feel toward other people. Before you close your browser window in disgust, please do read on.

It's not that I resent specific people. It's more that I resent (and envy) the carelessness of good health. I see it all the time, the ease with which many others live their lives, blissfully ignorant of the continual attentiveness that is chronic illness.

Most of my energy during the day goes to thinking about and coping with the little challenges I come across. I'll reference here the Spoon Theory, written by Christine Miserandino, the founder of But You Don't Look Sick?, a wonderful site for anyone with invisible illness. Anyone with chronic illness knows the very real challenge of living within your limitations, learning to conserve and use your energy (spoons) wisely. I've found that just to conserve my spoons, or to prevent spending them too quickly, in itself takes a lot of spoons.

This is something that is very difficult for people without chronic illness to understand. I don't (usually) resent them for it, but I do envy the decisions they don't have to make.

A friend of mine once described it like this:

On choice:

Most people simply make their choices and leave the momentous decisions for things like buying a house. It sounds to me like the difference is that simple choices become decisions for you. So in that sense you don't get choices. You're forced to make decisions, and the weight of each decision carries with it a stress load quite unlike that of mere choices. And since other folks don't have that load, they really aren't likely to get how the process affects every other aspect of life. "Well, why can't you just...?" You can never "just..." anything.

And that is the essence of this second type of resentment. I can never "just" anything.

A perfect example: my team is having a BBQ tomorrow after work. Deciding whether or not DBF and I will go has been putting a lot of stress on me. Do I have enough spoons left from the week to do this extra activity on Friday? Will I have the energy to socialize? What will I do about food? I can't eat any of the food being served (hamburger, hot dog, veggie burger) because of my strict diet. Will I have a good time if I go? What won't I be able to do this weekend if I decide to go to the BBQ? How will this affect my work next week - will I have enough energy to make it through the full 40 hours? Questions like this have been buzzing in my head all week. There's no easy answer. I want to go, but I don't know if the cost to me will be worth it. (And I'm not even talking about the $10/person contribution to the food/beer budget.)

Most of the people on my team have not had to face these questions. If I was healthy, it would "just" be a matter of, is my schedule clear? Do I want to go? Yes + yes = go to BBQ.


Next Wednesday is my 25th birthday, the third birthday I'll have during this current bad migraine cycle. Never did I think I would be sick for so long. I'm trying not to be depressed about it. I will get to spend it with DBF, a wonderful, caring man who has been through so much with me on this confusing and difficult journey. And he's buying me ice cream cake. It's completely against my diet, but I'm not willing to skip it completely. I've had to give up so much already that I just need a slice of normalcy.

Have a good weekend, everyone.

Be well,

Monday, July 14, 2008

July's headache carnival is posted!

The July Headache Blog Carnival - How Spirituality Helps Us Cope with Migraine Disease - has been posted over at Diana Lee's Somebody Heal Me. Yours truly has submitted an entry, along with many other worthwhile entries I'm still working through.

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month's carnival for a collection of informative entries on how spirituality helps us cope with migraines and headaches.

Be well,

Saturday, July 12, 2008

call for submissions - tell your own story

Fellow chronic illness blogger Leslie, over at Getting Closer to Myself, has put out a call for submissions.



Are you:
- A woman in your twenties or thirties who has a chronic illness, or
- A woman who is older, but was diagnosed with a chronic illness in your twenties or thirties?
- Are you either one of those and you blog about your illness?

If so, I am working on a project collecting essays from women about their experience with chronic illness. There are many books available that chronicle the story of one person. And they are great, but… I’m interested in providing women like me with a variety of stories that they can relate to. Although the diseases and symptoms may be different, the overall experience of chronic illness is very similar. I am also interested in having people tell their own stories.

These stories should be in your own words! Tell it well and tell it from the heart!!!

I know I would love to see a book like this come to fruition, so please consider sending her your story. Full details and submission requirements can be found at the original post: Getting Closer to Myself: Call For Submissions!!!

Be well,

Friday, July 11, 2008

on migraines and a path to harmony

I did not originally plan to write a post about spirituality and migraines, as my faith is erratic at best. I'll admit to you now that after reading fellow blogger Megan Oltman's entry on the subject (God Grant Me the Serenity to Accept Migraines I Cannot Change), I felt moved to write my own thoughts. (Thank you, Megs.)

I consider myself agnostic. I was raised Catholic in my family of five, though as time passed, we five Catholics became five different faiths. My father has become more Catholic as he's gotten older. He and I aren't on the best of terms, and perhaps that contributed to my ultimate rejection of Catholicism. (That isn't the subject of my post, however, so I won't detail it here.) My mother is atheist, though she often refers to the power of the "cosmos". My sister converted to Judaism; my brother is "spiritualist other". And then there's me.

My spirituality is best explained as a search for harmony within myself, and with the world around me. I live my life honestly, trying to be true to myself and to those around me. I've been drawn to yoga and now tai chi as an extension of this search for harmony, as they serve as wonderful stress relievers, as well as a way to listen to my body.

Listening to my body. Hmm. Turns out that's key to living well with migraine disease.

Like many others, I finally crossed the line from Catholic to agnostic in college. That is also the time I discovered how important it is for me to listen to my body. At times, I could (and did) override its needs. But college is also when I started yoga, and having that hour-long class each week - even though I didn't always stick with it - gave me an opportunity to hit pause and dig within myself to listen to my needs. And it also gave me a way to reach out to my environment and listen to what was going on around me, to appreciate the simple beauty in a tree or flower.

Now that my migraines have become chronic, and a singular migraine, I've found again the importance of harmony within myself. As an attempt to ease my pain, I've begun to live a much healthier lifestyle. I keep a strict diet. I sleep regular hours. I moderate my indulgences. I do a relaxation exercise every night at bed, to reset myself and to combat my chronic insomnia. And I try to do moderate exercise every week, tai chi with a DVD when I can or even just a walk in town. (Unfortunately, all of these changes have made negligible difference on my daily pain.)

More than anything else, though, I listen to my body and try my best to create harmony and balance for myself. One of the many reasons seeking harmony is important is that it lets me feel I'm doing all I can for my body - and mind - to live healthfully. If I'm living as healthfully as I can, then I can feel confident I'm doing my part in my migraine treatment.

Studying 35 mm photography in college, a hobby and love I have continued post-graduation, taught me to look at the world differently. To find beauty in unexpected places, in the curve of a path in a garden or the grit of a city. I've learned since then to find the beauty of harmony within myself, which has been an essential coping tool living with migraines.

Perhaps my flavor of spirituality is unconventional, or even offensive or silly to some. Perhaps some will see this as an opportunity to convert me; please understand I am not interested in that. I do think that the basic idea of harmony is one that many of us can embrace, especially in the context of chronic illness.

So, on the days of severe pain, when I rage at the unfairness of it, I try to slow down, breathe, and delve deeper into that part of myself that is separate from the pain. It won't make the pain go away, or easier to bear, but it does help me find a spot of peace in an otherwise turbulent world.

Be well,

Thursday, July 3, 2008

RWM is on vacation

Just a quick note: DBF and I are on vacation until July 10, so Rhymes With Migraine will return later this month. In the meantime, I invite you to check out the many great blogs on my blog roll.

Happy Fourth!

Be well,