Yes, Body, I’m Listening
By Kerrie | July 28, 2010
“C’mon, you don’t feel that bad,” I told myself upon realizing I was slumped over the coffee table with my head resting on my arm. My next thought was “Oh, wait. Maybe I do.” What an exciting moment to realize I was listening to my body.
A couple years ago I conceded that if I find myself sitting on the kitchen floor, I probably feel too bad to be cooking or cleaning. Or if I’m resting on the couch and discover I’m in the fetal position, the migraine is probably pretty bad. Instead of shrugging off my body’s cues as melodramatic, I finally see that unconsciously engaging in pain-soothing behaviors is a good indication I’m in bad shape.
I have long done so much on a good day, trying to take advantage of it, that I push myself into days of sheer exhaustion and severe migraines. That hasn’t been happening so much in the last year. Perhaps this is a sign that I’m paying attention when my body tells me to stop.
How does your body tell you it’s time to rest?
Topics: Coping | 3 Comments »
Migraine Hangover & Recovery Day
By Kerrie | July 26, 2010
The five-day migraine let up! I’d like to be celebrating by cleaning the bathroom, but am instead still idle, waiting for the migraine hangover to pass. I’m sluggish, vaguely headachey and spacey while my body sorts itself after the “extreme neurologic disruption” (I just love that phrase) of a migraine episode. Though the symptoms vary from person to person, anyone who has had a migraine know exactly what I’m talking about (as evidenced by the 120+ comments on an earlier post). What are your migraine hangover symptoms?
Topics: Biology, Coping | 6 Comments »
Remembering Why I Blog
By Kerrie | July 23, 2010
My mood lifted almost immediately after I posted on Monday. When I sat down to write, I had no idea what was going to come out. The ideas that flowed through my fingers surprised me. And released the reminders of why blogging has been a crucial “treatment” for my migraine and chronic daily headache.
While writing, I work through what’s bothering me and discover feelings I didn’t know I had. I speak candidly without worrying you will be distressed by what you read (as I fear my friends and family will be). In fact, there’s a good chance sharing my grief or guilt or pain will somehow help in your journey and provide comfort. I also don’t have to pretend to be someone I’m not. You come here knowing I have a chronic illness. You don’t remember who I was before I got sick, so you don’t miss who I used to be. Nor will I scare you off by talking about my struggles, as I feel I do many new people.
Whenever I talk about the blog, I focus on helping other people who are in a similar situation. I say the relief and support I get from it are lovely, but I’m really doing it for the readers. Now I see I am the true beneficiary. Even though I have been absent much of the last two years, this community has been crucial in my emotional healing. Thank you.
Topics: Coping | 4 Comments »
Revisiting the Pain of Years Past
By Kerrie | July 20, 2010
After a brief migraine respite (by “respite” I mean a few hours each day in which I can cook, run errands, etc. even though my pain levels hit at least a 7 most days), I’ve been back in Migraineville since late March. The last few days have been decent, yet I’ve been reluctant to return to the blog. An increased heart rate and shaking hands betray the nervousness I feel, though I can’t locate the source of it.
As cathartic as the blog has been, I suspect I am reluctant to return to the place where so much of misery is stored. [cue tears] It is difficult enough to look at the migraine diary I’ve kept since February and those are just numbers. I don’t have to re-read The Daily Headache; I know it contains five years just like the last few months. This pain I fight to escape isn’t any better now than when I began.
Blogging also reminds me of the many plans and hopes I have for The Daily Headache. I still believe I will eventually get that newsletter/support group/coaching going. Maybe I’ll even revive the forum I had to abandon in its infancy. Right now it feels far more likely that I’ll be thrilled to get a post written every four months. Kinda like the last two years have been. I can’t help but feel demoralized.
You know how hard I strive to keep a positive attitude. Blessed with a natural optimism, I’m generally fairly successful. But I still long to have my life back.
P.S. My mood was much improved within 30 minutes of posting this. Must be that catharsis thing I mentioned.
Topics: Coping | 7 Comments »
Hey There
By Kerrie | March 30, 2010
Reading is back to being a ginormous trigger. Ideas for posts are constantly percolating so it is particularly frustrating. Hart is looking into dictation software and I hope to get back to writing soon.
The migraines are still bad, though my pain level topped out at 4 two days last week. I’m seeing a therapist and taking huge steps toward understanding myself, depression and the influence of illness on my life. She recently directed me to information on the “highly sensitive person.” The framework fits me well and the potential connections to migraine are immense. I’m looking forward to telling you more!
I hope you’re doing well as well as possible.
Topics: Coping | 18 Comments »
Good News & Bad News in Last Couple Weeks
By Kerrie | March 2, 2010
Bad news: The migraines have reached a level 8 or 9 nearly every day. Being on the computer has been a huge trigger.
Good news: Although the pain levels have been high every day, I was only laid flat one day. I’ve gotten out by myself several weekdays each week, seeing a therapist and a physical therapist, going to the grocery store and even doing some retail therapy (Buffalo Exchange opened nearby in October!).
Hart and I have gone out at least one day each of the last three weekends, visiting the aquarium, the natural history museum and the science museum. We’ve gotten coffee, crepes and hamburgers. Maxalt, a triptan, has been working for me lately, and I’ve taken it for nearly all these excursions. Even then, I usually wind up taking Midrin, naproxen and sometimes Zofran. (I’m careful to not overuse any of them.) The benefits to my spirits are worth taking meds.
Exercise is becoming a more regular part of my days. I try to walk a couple miles a day, whether on the treadmill or while out and about. Today I jogged on the treadmill for a minute! A yoga therapist has come over for a few private sessions. I’ve learned an excellent restorative pose and a modified sun salutation practice. Moving my body is blissful and my body feels better when I move it.
In my outings, I’ve spent some time in Davis Square, a neighborhood that feels homey. (It’s where Buffalo Exchange is.) Getting excited about a place here is reducing the homesickness a bit, though knowing that Seattle has been in bloom for a month is troublesome.
Tomorrow I head to Phoenix for a week. My sister and I are meeting to help our mom prepare the house to sell in the fall. I’m eager to bask in 70 degree weather while wearing summer clothes. Going through storage sheds and closets should be fun, too - an archaeological dig of sorts.
So the news is mostly good. I still have awful hours every day, but I feel more like I’m living life than I have in years.
Topics: Coping | 11 Comments »
Migraine’s Life Lessons: Backup Plans, Optimism & Flexibility
By Kerrie | February 18, 2010
Hart and I planned to go to the Harvard Museum of Natural History last weekend, but a migraine kept me from going out. Instead of sitting on the couch or going back to bed, Hart and I worked in the kitchen then watched a movie and the Olympics. We made salsa, hot sauce and cornbread. It wasn’t what we planned to do and I operated at less than full capacity. But it was a lot of fun and we got to spend time together. In the end, I wasn’t even disappointed we didn’t go to the museum. I still had a great day.
People often ask how I can have such a positive attitude about life with migraine. I always thought it was a joke when I answered “I’d be dead otherwise.” I wasn’t kidding. I can’t imagine how I could have gotten this far being this sick without my optimism. I think it is the lack of disappointment that keeps me going. I can be happy whatever I’m doing (if I’m in the right mindset).
In my “I can’t” phase, I lost the crucial ability to make backup plans. I assumed that if I couldn’t make my original plans, then I couldn’t do anything. Admittedly, this was often because I was so sick that I couldn’t do more than lie in bed or sit on the couch. Yet the art of making plans B, C or sometimes D contributes to the optimism and flexibility that allow me to enjoy life despite migraine and depression. I make lemonade through the optimism that I can still have fun and still do something even if it wasn’t what I intended. I need enough flexibility to come up with alternatives when necessary.
I’m not say it is easy or even always possible to have a positive outlook. I’m fortunate in that I was born a Pollyanna, but I also work hard at it. I try to look for the good (or not too bad) in all that I do. Sometimes it is as little as having the energy to put dishes away or enjoying an episode of Ugly Betty. This helps me stay in the moment and feel like I am truly living my life, not letting it go by in a migraine haze.
I often hear people say chronic illness has taught them to enjoy life. I’ve certainly come to that conclusion. What has life with headache or migraine taught you? How do you get through the days?
Topics: Coping | 18 Comments »
Managing Migraine With Music & Dance
By Kerrie | February 11, 2010
“I want music to be like food. A water or wine.” Chinese opera singer Shenyang (whose voice is amazing) describes music as a necessity. It certainly has been in my tangles with migraine. I honestly don’t know how I could have coped, particularly in the last eight years, without the joy music brings. (And I’m not alone in this.)
I’ve found that listening to music I love is more important than choosing a genre typically thought of as relaxing. My all-time comfort album is the first disc of Dave Matthews & Tim Reynolds playing a live acoustic show. That’s when the migraines are really bad. Most of the time I listen to hippie jam bands and afrobeat/funk/soul − anything that gets my head bobbing or hips swaying.
This may sound crazy considering that a primary characteristic of migraine is that movement worsens pain. Sometimes “dancing” is almost imperceptible foot tapping, other times even that is impossible. When I dance, especially at live shows, I let go of myself and my self-consciousness completely. That release is therapeutic even in memory. When I dance at home, in the car or in my mind during a migraine, my body remembers that freedom and loosens up.
Dancing with Pain blogger Loolwa Khazzoom believes so strongly in the power of dance as a chronic pain therapy that she teaches classes in it. What about you? Have you found dancing or listening to music to be effective in managing migraine?
I was going to include a photo of me dancing at a Phish show last summer. I share so much on this blog, but the picture of me lost in music is just too intimate.
Topics: Coping | 3 Comments »
Getting Out & About (and Lessening Migraine’s Hold on Me)
By Kerrie | February 8, 2010
Nudging my limits instead of automatically assuming I can’t do something has already lessened migraine’s hold on me. Not only am I getting to the gym a few times a week and picking up the Kindle when I think I can read, I’ve recognized that I’m never trapped in a situation or place if a migraine strikes. It may be unpleasant to leave a restaurant mid-meal or to get a taxi when I planned to take the subway home (neither of which I’ve had to do), but I always have options.
In the last 10 days, knowing this has given me so much freedom. I’ve gone to a few restaurants, a craft fair and an opening at an art museum. Hart and I met his college lab partner, her husband and their daughter for brunch. I visited a neighborhood I’m interested in living and spent a few minutes at a park with a pond (that’s where Hart took the photo). I was usually loaded with Maxalt, Midrin and/or naproxen, but I enjoyed myself and didn’t ruin anyone else’s time.
I’m still entirely dependent on other people to get out, though. Someone is always with me when I go out. Friends and family have been staying with us most of the time since Thanksgiving. When they aren’t, Hart is by my side. He drives me to appointments, even though he has to leave work at inconvenient times to do so. He also happily explores the city with me, often knowing we won’t get out of the car. I’m so fortunate to have such an amazing husband.
Yet Miss Independent has been down too long. It is time to start exploring the world (or at least going to the grocery store) alone. That’s the next step to getting the real Kerrie back. I plan to take myself to an appointment on Wednesday. It isn’t too far away and parking is easy. I know how to get there. The doctor runs on time and the appointment will only last 20 minutes. I think know I can do this.
Do you have any suggestions for making steps toward independence after illness has kept you down?
Topics: Coping | 4 Comments »
Trying to Find My New “Home”
By Kerrie | January 28, 2010
Home is where I want to be when I have a migraine. Being nearly housebound since I moved to Boston in August, you’d think I’d be all set. Except that “home” is far more metaphorical than literal. In Seattle, my home was on the couch in front of the fire. Even if my apartment here had a fireplace, it wouldn’t be the same. Home is an emotional place, an emotional state. One that is found by feeling it. One I haven’t found since moving to Boston, not in my apartment or in the city.
Driving from the airport into Seattle the first time Hart and I visited, I knew I’d found my home. In fact, when I was 13 and first visited the Pacific Northwest, it felt like home even though I wasn’t aware of what that meant. Now I’m 3,000 miles away and I feel the distance acutely. I know Boston is a great city and there’s a ton to see and do in the Northeast. Enough friends of friends are here that I’m confident we can build a great social circle. The move isn’t intended to be permanent. All this logic doesn’t erase the ache for Seattle and the forests of the northwest.
Hart and I went back at Thanksgiving. The first morning, we went mushroom hunting. My heart sang as we drove through the city, seeing the water and evergreens. The ferns, the moss and the drizzle in the forest felt so good that I turned my face to the sky to soak it in. Then a severe migraine hit on the drive back to our friends’ place. The subsequent migraines were so bad that, except for a massage appointment, I didn’t leave their house until we went to the airport, 10 days after our intended departure. I have to wonder if not wanting to leave my beloved city was the primary migraine trigger.
Over the last month, the migraines have improved steadily. I even went to Hart’s work’s holiday party Tuesday night and had a great, low-pain time. I also met a lot of new people, all of whom were curious about Seattle. Talking about my city was soothing yet heartrending. The next day, I stumbled upon The Place I Love: Songs About Longing, written by someone from Portland who recently moved to New York. Listening to the songs she shared was another bittersweet comfort.
Seattle’s lakes and trees and cranes and Space Needle fill my soul. Even when I didn’t leave the house, the glimpses out the windows cheered me. I didn’t realize how much the city carried me as I struggled with an ever-worsening chronic illness. Moving to Boston was the right choice for Hart and me and I want to make it home while we’re here. But how do I find my place in a city that doesn’t nurture me?
Topics: Coping | 10 Comments »