Tag Archives: lyme chick

Believing in Lyme When Looks Are Deceiving

Credit: Lyme Chick's Facebook page

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.

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It Hurts So Good: The Jarisch-Herxheimer Reaction

"The Scream" by artist Edvard Munch.Credit: Christopher Macsurak's Flickr stream

“The Scream” by artist Edvard Munch.
Credit: Christopher Macsurak’s Flickr stream

Sometimes during my recovery, I want to scream. But I tell myself to hang on. Because with Lyme, you often have to feel worse to get better. Welcome to the Jarisch-Herxheimer Reaction, or “herxing.”

Today, for instance, my chest is tight and burning, and there’s an uncomfortable sensation like ice water running through my veins. I feel ill all over, like you do when you have the flu or a high fever.

There’s more: Joints in my left foot throb, along with both knees and hips. My legs and arms are on fire with a burning pain deep in the tissue, as is my digestive tract. Add in weak muscles and low energy, and you can see why I’m on the sofa.

My mind might as well be underwater, my thinking is so muffled and remote. (As you may have guessed, it’s actually taking me several days to write this post). Chills crawl over my lower back and hips.

On the worst days, I don’t feel up to reading or watching a movie or visiting with a friend by phone. All I want to do is lie here. I’m good with that. Here’s why.

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