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Good News & Bad News in Last Couple Weeks

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.

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Getting Out & About (and Lessening Migraine’s Hold on Me)

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?

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Where Have I Gone? Seeking My Identity & My Life

This started out as the saddest post I’ve ever written. It gets better, much better, but the first part still makes me cry. (Mom, skip to the epiphany.)

RANT
I sometimes forget I’m an interesting person. People ask what I’ve been up to and my answer is basically nothing. We used to go out all the time. We’d see friends at least twice a week, more often three or four times. We’d go to plays, baseball games, concerts. We’d eat dinner out nearly every night.

Listening to friends talk about going out made me realize how much is missing. In the last couple years, I’ve really lost something important to my identity. Where did I go? Do I go out less because I feel worse or because I am more aware of how bad I feel?

It is no longer a matter of pushing myself. The last couple times I’ve tried to meet friends for brunch, I’ve left the restaurant in a woozy daze, shaking uncontrollably and feeling like the world is on its side.

Our car is in for a tune-up at a garage literally five blocks from my house. I’m trying to figure out if I can get there before it closes at 5 and what I’ll do if I can’t. It is a gorgeous day. I want to be outside, walking and enjoying it. But I feel horrible.

You know I hate to dump my complaints on you. The problem with finding the positive twist is that I don’t know if there is one. I miss myself.

Creating my Facebook profile, I was surprised by how many interests and activities I could write. There was a sense of deception… Do activities have to be something I’m currently doing in my life? I do them when I can, but that isn’t too often.

Have I become an “I can’t” person? If I have, it is with reason. The last six months have shown me that I can’t make classes that I sign up for, that I have to lie in bed while my friends play Rock Band, that I can’t make it to parties, that I cancel on friends at the last minute. Everything proves to me that I can’t do it. That’s not Kerrie. At least, it wouldn’t be if I had my say.

I am so sick. So much more than I’ve ever let myself believe. I want my life back. Hell, I’ll take any life these days.

*EPIHANY*
When I feel bad, I feel awful. When I feel good, I feel tremendous. There aren’t in-between push-through-it times right now. As is my pattern in life, my headaches, dizziness, wooziness and nausea occupy the extremes.

I’m writing this sitting in my hammock, which I hung after I got home from picking up the car, going to the library and getting coffee. A shower energized me today, though it usually makes me feel worse. I only have a mild headache. The wooziness is slowly creeping up, but I’m still happy.

I’m not lazy or moping. I do whatever I want or need to do as soon and as long as I’m able to do it. I think I am an “I can’t” person. But almost exclusively when I truly can’t!

LOOKING UP
The last two days have been particularly bad. Wednesday started out great, but three-hours spent at a new neurologist’s office was exhausting. The appointment was great, but it wore me out more than I have been in a long time. I woke up Thursday with such a bad migraine I canceled my appointment with a different new neurologist. I also skipped the baseball game Hart went to with some friends. And the migraine was with me until 11 a.m. today.

My outlook is much improved over this morning’s take. I don’t get to do many activities I want to do. I feel bad more often than not. I am much sicker than I’ve ever acknowledged. These things suck.

Still, I have a life that I love: An amazing husband, wonderful parents and family, friends who haven’t forgotten about me even though I’m not around much, a beautiful house, trips to incredible places, a blog with a huge readership and readers who care about me.

I enjoy this life most of the time. This morning was bleak, but I still have hope that I can live a happy life in the face of illness. I just have to remind myself of that once in a while.

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Have Chronic Daily Headache & Migraine Absconded With My Spunk?

Watching the crowd at the music festival bounce in unison, seeing fans passed from hand to hand, I knew the crowd was infected by the intense energy of Gogol Bordello. I wished I felt good enough to join in.

“You’re the kind of person that would be right in the middle of it” was Hart’s bittersweet reply when I told him this. Tears pricked in my eyes. I had to wonder: If I’m not up to being part of the crowd, am I really that kind of person?

The thought has haunted me since Saturday. I have to think that my fundamental nature hasn’t changed. I’m positive that if I felt OK that night — and Saturday was a particularly bad day — I would have been in the middle of the crowd.

Thinking and rethinking the situation all weekend, I concluded that I’m not that kind of person anymore. Today I’m reconsidering my position.

I danced with some guy at Vegoose last year and noodle danced until 4 a.m. the year before. I danced at a show earlier this summer even though the floor was so sloped I was afraid I’d tumble to the stage. I’m dancing in my chair as I write this.

I still have my spunk. I am the kind of person who will celebrate with the crowd. I have no doubt.

This isn’t the first time migraine and chronic daily headache have caused me to question my very self. What a relief to look deep and see core traits unchanged. And, as cliched as this is, having a chronic illness has made me appreciate who I am and the time I have.

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Migraine Down, Motivation Way Up

I often worry that even if my migraines were under control, I still
wouldn’t accomplish anything. That the problem isn’t my illness, but
that I’ve become lazy. The last three days have shown me just how much more motivated I am when I don’t have a migraine and my headache is mild.

I’ve taken care of many tasks that hang over me but I usually don’t have the energy for. Even now, with the house picked up and all my phone calls made, I’m looking for more to do.

The voice in my head is saying, “You need to rest. You feel great now, but will crash — hard — if you keep pushing.” I’m proud of that voice. It took so long for it have a permanent spot in my head that I truly appreciate the reminder. I’d listen to it if I didn’t know that a migraine could make my head explode and steal my energy and mind at any moment.

What a relief to know that migraine and chronic daily headache haven’t permanently snatched a integral part of my personality. Maybe they’ve made me appreciate it even more and have (almost) taught me to back off before I overdo it. I’m not ready to give it the Pollyanna treatment, but maybe, just maybe, there are some hidden blessings in this illness.

I’m going to try to listen to the wise voice in my head now. I need to eat a sweet and then will snuggle up with Harry Potter. I encourage you to relax and enjoy your weekend too. Taking care of yourself can be magical.