Chronic Migraine, Coping, Triggers

Finding My Life After Years of Saying “I Can’t”

Telling me not to do something is a surefire way to get me to do it. My mom swears reverse psychology was the only way to keep me in check. So it seems laughable that my motto for the last two years was “I can’t.” There’s no laughter here, just sadness at the realization I’ve held myself down. In trying to not overextend myself and avoid migraine triggers, I have lost myself and my spunk.

I stopped reading in January 2008 when I noticed that it triggered migraines. I also unwittingly handed migraine control of my life. I could only think of it in terms of “I can’t read” and “I can’t work on the computer.” That was just the start. The list of what I couldn’t do grew quickly. I couldn’t go places with bad lighting or loud noises, do any exercise that raised my heart rate (including yoga), go to movies, play Rock Band…. Eventually coming to rarely being able to leave the house.

All along, I thought these were choices migraine made for me, not ones I made for myself. To a large degree they were. These (and many other) activities did trigger migraines. Ceasing all of them, however, didn’t make the migraines go away. I’d eliminate one trigger, then another would pop up. The migraines have only gotten worse.

Now I wonder if giving my power over to migraine worsened the illness. By abandoning activities I love, I crippled essential elements of my identity — an identity already ravaged by migraine and depression. Restricting myself so I don’t overdo it or not engaging in activities I love hasn’t made me feel better. It has curtailed my personality and fed my sadness.

Pushing boundaries is what I do. Actually, charging right through boundaries is what I usually do. When that didn’t help the migraines, I held myself back, playing it safe to a fault. Now I’m practicing nudging the limits, with good results.

  • Using the largest font on Hart’s Kindle, reading no longer triggers a migraine every time. If I want to read, I try it out for 10 minutes. If I feel worse than when I began, it is time to put the book down. (Though I am annoyed that I have to buy books instead of getting them at the library.)
  • The migraines aren’t always worse when I walk. Sitting on my couch or lying in bed aren’t my only options. I can stand in the kitchen. It may take an hour to load the dishwasher, but I’d otherwise spend that hour on my butt or back.
  • Showering often makes the migraines worse, but, again, not always. Two days last week it did. I had appointments both days so I meditated/napped for 45 minutes to regain my strength. I was able to enjoy the next four hours of both days.
  • Raising my blood pressure through exercise always triggers a migraine. Or so I thought. I’ve walked on the treadmill maybe 15 days this month and it has only triggered three migraines. Many days I only last 10 minutes, but yesterday it was 37. Quick I am not, sometimes I’m not even walking two miles an hour. But moving my body feels so good.

I got so scared of the migraines that I stopped doing things that bring me joy. I’m finally seeing the place between too much and not enough. Slowly, gently. I’m coming back to life.

Chronic Migraine, Coping

Three Things Each Day, Even if That’s Only Breakfast, Lunch & Dinner

Continually setting my expectations too high and continually being let down is a common theme in my life. As much as I know there’s an overachiever inside of me, I also know that I physically can’t do everything I put on my to do list each day. I try not to feel bad about it, but a small sense of failure always lingers. Sound familiar?

My meditation teacher said to our class today something she told me a couple weeks ago: Set three priorities a day, even if they are breakfast, lunch and dinner. The idea is to have appropriate goals for what’s happening in your life. By having realistic expectations, you’ll see that you are successful and able to do what’s most important to you.

I’ve been trying her recommendation. For the most part, I can reach my goals each day and not focus on all I haven’t done. My list is limited and I don’t feel as overwhelmed. I’m also open to revising it throughout the day. A day may start out well, but by afternoon I know washing my face before bed will be the most I get done. I’m a little harder on myself in that case. . . .

Today’s list was ambitious considering how I’ve felt: Go to meditation class, buy groceries, pick Hart up at the airport. The first two were checked off by 1 p.m.; Hart’s flight isn’t in yet, but I definitely feel up for the drive. I even managed to go to the library and post office, both of which I’ve been trying to do for days.

Knowing I’d taken care of the first two items on my list and that going to the airport tonight was a priority, I let myself rest this afternoon. I still feel a little guilty for watching three episodes of 30 Rock and three episodes of Weeds in the middle of the day, but knowing it was part of my plan makes it easier.

Tomorrow’s list: Go to my massage, meet my sister and nieces in Tacoma, and be back home in time for Hart to take the car to his poker game. It is kind of ambitious, but I’m pretty sure I’ll make it. If not, I’ll remind myself that even getting myself fed was a challenge that I rose to.

Community, Coping

Balance & Illness: Tips for Slowing Yourself Down

“Holy Toledo Bat Girl.” You gotta respect any email that begins that! In response to Balance & Illness (and Always Pushing Myself Over the Edge), Carolyn sent me a caring, sympathetic note. She shared her experience with and tips for keeping herself from overdoing it.

About 4 years ago I got into rebound headaches for the second time, I had just started a new job, I had signed up for a class, and was started in with a new volunteer group. I think it was then with my migraines out of control and these things that I had to cancel-the class, the group, etc, I realized I had to find balance. I have found more through trial and error, what works best for me.

Here are my rules:

  • I don’t commit to do something on a weeknight, after working it’s just too much.
  • On the weekends we do chores, I do laundry and groceries and I try to cook a batch of something for the week (I like to cook too).
  • If I need to go outside the house for errands I limit that to about 2 stops or about 2 hours. And I would limit myself to one event a weekend.
  • I try not to double book. I tire easily. Social things tire me. I just don’t have the stamina that other people do.

(But I do understand the need to make “real” lemonade. I catch myself doing stuff like that. The need to have both families over at once. I cut that out. It was too much.)

Carolyn’s rules got me thinking about the constraints I’ve put on myself — ones that are obviously insufficient. I have to eat. I have to rest for a little while. If I feel myself going too far, I must sit down. I followed all these rules all three weeks. The problem is I didn’t see that three weeks of activities could wear me out, even if I rested.

When I told Carolyn that I have trouble convincing myself that I’m not lazy, she had another thoughtful response.

I think because we have a chronic illness when things go wrong (like when you ended up in bed for the day), you may have blamed yourself. We are always on the lookout for what is causing a flare up and what we did wrong to cause a flare up.

Living with a chronic illness is so hard because we are always trying to manage it by doing the right things. So when the illness flares up we tend to blame ourselves, when really, we are trying our best all of the time. If I look at my friends and family they aren’t nearly as careful as I am day in day out with diet, exercise, schedule, balance, etc.

Many readers have told me they learn a lot from The Daily Headache. What you may not know is that I learn just as much from you.