Lyme Disease and Chronic Fatigue

I spent most of my life wrapped in the heavy embrace of fatigue. For many of you suffering with Lyme disease, chronic fatigue has become a part of your daily life. In fact, fatigue is the most common symptom of Lyme disease. And because it shares so many of its symptoms with Chronic Fatigue Syndrome, it is often misdiagnosed. You will also relate to the fact that once I started treatment for Lyme disease, the exhaustion got even worse. It wasn’t until post-treatment that I learned what “normal people” (those not suffering from a chronic illness) meant when they said they were tired.

Fatigue Can Steal Your Thunder

My first memories of being tired are when I was about eleven years old. My mom had started me in ballet at the age of three. I immediately fell in love with ballet and going to dance class was my favorite thing to do. I would jump in my mom’s car after school with enthusiasm, excited to flit around the dance studio. But, by the time I enter middle school, the images of an energetic young lady start to fade. Instead, I see a young girl struggling to stay awake.

From then on, exhaustion follows me around like a shadow. As a young girl I was able to push through it, but as I grew older it became harder to ignore. When I entered college, the lethargy came roaring to the surface. I was weary all the time and struggled to stay motivated. In the absence of parental guidance forcing me to go to school or work, I crumbled. My inner voice and desires became too prominent to ignore. That exhausted person was saying, I’m tired, let’s go back to sleep. You can miss one class, it won’t hurt anything really. Needless to say, I failed my dance class my freshman year of college. Ultimately, I would stop dancing altogether. I would give up my lifelong dream of being a professional dancer, due to Lyme disease and chronic fatigue.

For the next twenty years I floundered through life, losing one job after another. By the time I was finally diagnosed, at the age of thirty-nine, I couldn’t get through the day without taking a nap. I no longer felt capable of holding down an eight-hour-a-day job. As you can imagine, my finances were taking a big hit, as well as my self-esteem. As I would come to discover, this exhaustion would seem like child’s play once I began treatment.

Lyme Disease Treatment Will Make It Worse

I hate to break the bad news but I can’t sugar coat it for you. In all reality, the word fatigue doesn’t do justice to how incredibly tired those who are suffering through Lyme disease feel. There’s a heaviness that never leaves your body. Everyday mundane chores begin to feel like climbing Mt. Everest. Getting dressed in the morning, brushing your teeth, taking a shower. Even taking your dog for a walk feels seemingly insurmountable. I remember one day in particular when the exhaustion felt as though it would overwhelm me. It’s a day that still makes me cringe in remembrance. It was July 25, 2017, a month into my treatment.

“My beagle Ollie didn’t get many walks in those early days of my treatment. Most days it was torture simply walking the twenty feet down the hallway to exit our condo building, then the next twenty-five feet or so to reach the grass where Ollie could relieve himself. Maybe I had a burst of energy that day. Maybe it was a guilty conscience, as regards Ollie’s lack of exercise due to my illness, that drove me further away. Whatever the reason, I decided to take Ollie for a walk. I was about a block and a half from home when I knew I had made a mistake.

The lethargy hit me like a ton of bricks. The sun beating down, shooting heat rays of searing fire into my entire being. I became lightheaded and dizziness overwhelmed me. I thought for sure I was about to faint. My heart hammered as though it would pound out of my chest, the sound of it echoing in my ears. There was a moment where I considered sitting down on the pavement, certain that if I didn’t sit voluntarily, the ground would reach up and violently drag me down. Images flashed through my foggy, fear-stricken brain. An image of me crawling back home, the blistering hot asphalt abrasive on my knees, Ollie whimpering beside me, worried about his mommy. I was staring down strangers as they drove by, hoping they would see the desperation in my eyes and offer me a ride home. I really didn’t think I would make it.

In that moment, a memory flashed in my brain of that poor woman in the documentary Under Our Skin we had watched just a month ago. The images of her trying to walk across her lawn, the images that weakened my knees to the point of collapse and sent me into a fearful fit of crying. I thought to myself, This is really happening. I am just as weak and feeble as she was. But, just like her, with grit and sheer determination, I put one foot in front of the other and slowly, ever so slowly, I made it home. It would be a long time before I attempted another walk alone.”

It Will Get Better

Those first few months of treatment were the darkest of days. There were times when it all felt like too much. Although Lyme disease and chronic fatigue go hand in hand, I am here to tell you that I made it through. I climbed that mountain time and time again. Every day, with sheer determination, I set my sights on a brighter day. I kept my eye on the light at the end of the tunnel. Even when it became dim under the veil of my condition.

On March 6, 2020, I was officially declared in remission from Lyme disease. It was a glorious day. Now today, I no longer need a nap every day. I shower regularly and I can clean my whole house in one day. I can go for a bike ride and out to dinner on the same day. There are some symptoms that still linger, but, I am no longer ruled by fatigue.

**This post includes an excerpt from my memoir The Battle Within: My Lyme Story.