Staying grounded while recovering from Lyme disease
I would have missed this award-winning documentary on PBS by a young woman named Jennifer Brea had my brother not alerted to me to it after he heard a segment on NPR. (See below for streaming links).
Here are a few words that were in my mind as I watched: Brilliant. Inspiring. Courageous. Talented. Heart-rending. Timely.
Two things in particular sustain me: natural beauty and friends.
Photo: LifeLoveLyme
For a long time now, I’ve been in a place where viewing the lives of friends through the window of Facebook is incredibly painful. What’s wrong with me? Why can’t I just enjoy the happy happenings of others instead of being overcome by my own piercing grief, frustration, and regret?
I checked my page today and saw a lot of posts from folks, many of whom I have not seen since I got sick. They’re experiencing all kinds of major life events. Meanwhile I’m facing major limitations.
Credit: Lyme Chick
“You look great!”
Many days, I wince when someone says that to me. I want to shout in frustration “I FEEL AWFUL!” And when I try to explain, I want to hear “I believe you”—not “But really, you do look great!”
I’ve felt hurt because even those closest to me don’t see my suffering sometimes. But I’m realizing it’s hard for them to believe how awful lyme can be if I don’t clue them in. Especially when it comes to pain.
Not long ago, my longtime neighborhood book group got together for a potluck dinner. I was just getting to the point in my recovery where I could leave the house occasionally. So I said I’d love to come if I felt okay. Especially because they let me off the hook when it came to cooking a contribution for the table, which I knew I couldn’t manage.
Happily, I made it to the dinner. A few days later someone sent around a photo that included me. By the time I checked my email, a couple of others in the picture had piped up, making jokes about how the picture should have been photo-shopped…the usual chatter of people who hate photos of themselves.
I’m usually one of them. But I opened the file and had to admit I looked, well—great. Yes, great.
The thing is, I felt like hell on the inside.
Mo says, “Time to go out and greet the neighbors!”
I woke up this morning gripped firmly in the vise of depression. The minute I opened my eyes, I felt the weight of negative thinking pressing hard on me: “I will never again have my life back as I knew it.”
Sure, since my total relapse a couple of months ago thanks to a new tick bite, I’ve improved drastically. But still, on a good day I can manage only one or two activities—and manage is the key word. The rest of the day is an interminable stretch I try to fill with reading, movies, and rest enough to keep the pain at a tolerable level.
I miss walking, running, biking, hiking, traveling, shopping, visiting my kids, cooking wonderful meals, visiting friends, volunteering in my community. Not to mention working. I’m not always able to be positive about my slow but steady improvement.
Fear that I’ll hit a plateau weighs me down. But I’ve learned I can help myself by sticking to this anti-depression strategy: enjoy one social encounter a day.
Taking care of yourself isn’t, well, rocket science…
[Dr. Robert Goddard. Credit: NASA on Flickr/The Commons]
Here are some lessons I’ve learned. Maybe you can benefit by taking them to heart now, instead of learning the hard way like I did over time and missing out on benefits you could have enjoyed much, much sooner. Continue reading
I always keep a pile at hand, in case a book doesn’t grab me.
I have fond memories of reading days in college before exams, when I holed up in the university library to immerse myself in my studies. My life is a bit like that now, with many lyme-imposed reading days spent in bed or on my red sofa.
And right now, I have an added challenge. I had a couple of good days, so I thought I was cured. Right. Will I never learn? I did ten leg lifts lying on my back—and blew out my lower back. I did too much too soon. Excruciating muscle pain on top of lyme symptoms mean I’m literally flat out today.
Fortunately, stepping up reading time is a pleasure for me. In grade school, when our public library limited check-outs to three at a time, my mother got special permission for me to get ten so she didn’t have to make the long drive into town from our farm quite so often. On a lazy summer day, I could knock out a couple pretty easily.
For the past two decades, I’ve met monthly with not one but two book groups, reading and talking about everything from plays to fiction and nonfiction. In one group, we decide on a reading list by committee. In the other, the hostess of the month chooses a title. The latter gets me trying books I might not have voted for, and I’ve made some great discoveries.
Needless to say, I have missed most of the meetings over the past year—but I have read all of the books. I also have many book-loving friends who share recommendations. Yet sometimes it can be hard to find those books that draw me in, the writers who take me away from my world and fully into another. Continue reading
LifeLoveLyme 