Saturday, February 26, 2011

Puppet Legs

Hands down, Lyme disease recovery is the hardest thing I've ever gone through. It is a private struggle; people with Lyme disease are usually too sick to go out much. When I do venture out, it's because I'm feeling "good," which means people who see me get a very distorted picture of what it's actually like to have Lyme disease.

In fact, most of my closest friends and family have not even been exposed to the ugly side of my disease. They get to see the "good days," and although they may hear me talk about being sick, most people have no idea what Lyme disease is really like.

The things that happen to your body when the Lyme bacteria are dying off are very scary. This is the absolute worst part of Lyme disease and the side that most are spared from seeing. This is when those of us with Lyme appear to have dropped off the face of the earth because we are very, very sick.

My blog is my way of letting the world know I haven't disappeared. So, now I'd like to open the curtains and give you a peek at what it's like behind the scenes-I'm going to share one of my recent Herxing experiences. I was feeling fine a few days ago when suddenly, out of nowhere, my legs gave out on me. One minute I was fine and the next I was very much not fine. My anxiety, which has been relatively quiet lately, kicked into high gear and I was hit with a burst of nervous energy and I couldn't sit still. So I was left pacing anxiously around the house with legs jiggling and bobbing like a marionette puppet.

I was hunched over like a little old lady and for whatever reason, physically unable to stand up straight. My body was twitching and jerking all over. I didn't have any help for the day and so I was home alone with my two kids. I called up a friend on the phone, a fellow Lyme sufferer, and she talked me through the worst of it and calmed me down. She forced me to sit still and let my body rest. She knew to distract me from the anxiety and fear that comes with being trapped in an uncooperative body where anything goes.

The episode lasted for about 45 minutes. My legs eventually stopped wiggling, waggling, and wobbling, but I was left with a fatigue so debilitating, a word doesn't even exist with which to describe it. By this time, one of my close friends had come over to help me and carried up the steps so I could rest in my bed. It is incredibly humbling to be so weak you have to be carried. But on the other hand, it is amazing to have people in my life that care about me enough to literally and figuratively carry me through this.

Lyme disease takes you to the darkest places you can ever imagine. You are literally at the mercy of your body. I've had times when I've been too weak to walk to the bathroom and have had to be carried. I've had times when I've been too weak to even talk.

As scary as they are, those are the times that make me reflect on my Lyme journey the most. My heart floods with gratitude for the amazing people that have helped me get where I am today, and I truly wouldn't have made it this far without the help of some pretty incredible people. I try to remember how hard my body is working to get me healthy again. My heart is full of love for my incredible doctor who risks her job to help people like me get better.

Today, two days later, I'm still feeling the effects from my puppet legs incident. My leg muscles feel like I asked them to run a marathon. My neck and back are so knotted up and painful that I wonder if perhaps I was actually in a car wreck and forgot!

I really don't like writing posts like this, but I want so badly for people to know what it's like living with Lyme disease. The easy thing to do is to close your eyes and let me, and others with Lyme disease, drop off the face of the earth. Most of us with Lyme disease are fighting not only for our health, but for acceptance, understanding, and validation of our disease. I love to hear from my readers, so please leave me a comment!


  1. You have described the herxing so well and I dont think people really get it until they experience it. My NAET practitioner told me her colleague said "I had no understanding of the pain people with Lyme talk about until I got lyme myself".
    Keep sharing...keep journaling...and keep moving foward when you can. Your courage inspires the rest of us too!