The Aftermath of Lyme Disease

During my treatment, as life passed me by, I would stare out my windows anxious to rejoin the world. I lamented all of the things I was unable to do: riding my bike, rock climbing, going for walks with my husband and my dog, paddle boarding. I was certain that in remission I would hit the blocks like a sprinter and race off into the sunset. The reality, the aftermath of Lyme disease, isn’t quite so fairy tale happy ending-ish. It takes work to get back on the horse. After you’ve been bucked off time and time again, your instincts shy away from the pursuit. I thought the fight would end when my treatment did. But it didn’t end, it simply took on another form.

In my post, Finding Peace in the Struggle, I talked about how I managed to stay sane during my treatment. I have also shared with you the endeavor of Learning to be Well Again. In this post I’d like to share my real experience in the aftermath of Lyme disease. The reality is that the trauma of chronic illness is a whole-nother beast. The talon-like grip of psychosomatic memory is difficult to release. If you have found yourself well from Lyme disease yet still fending off old fears, you’re not alone.

Still floating on the sea of desolate misery

This past weekend was fantastic, full of relaxation and fun times. My husband and I went paddle boarding and basked in the sun. We went swimming and puttered out on our sailboat to rock in the waves of Flathead lake. It was spectacular.  And yet, I woke up this morning, two-and-half-years out of treatment, and felt a loneliness and sorrow wash over me. So, why did I wake up this morning sad and lonely? I was momentarily perplexed. It took only a few short moments of reflection to recognize this slide back into my days of treatment.

My mind and body still associates Mondays with a return to the forlorn days of suffering alone in our tiny condo. Instinctively, my body wants to curl up in a ball and wait out the fearful unfurling of loneliness. Those days were so painfully difficult that my mind has yet to break that feeling of floating in the sea of desolate misery. My only recourse is to jump right in the shower and tackle the day like the healthy person I am. As the day passes, so does that unconscious slip into sorrow.

The fear of a return of symptoms

There are any number of Lyme disease-like symptoms that still creep up from time to time. They inevitably cause reactions ranging from sorrow to outright panic attacks.

Occasionally, I get busy at work and don’t have time to eat lunch until I get home. As my hands start to tremble with hunger, my mind fights the fear that whispers in the back of my mind. I know that my tremor, caused by Lyme disease, is gone and the shaking is the result of hunger. But, the trauma still remains. As the anxiety builds up, my hands shake worse and before I know it I’m fighting off a panic attack.

The occasional diarrhea sends me into a questioning panic. Is this a return of Lyme disease? Bartonella? Babesia?  Do normal people suffer from diarrhea unrelated to any illness?

I experience minor dizzy spells from time to time. They are likely caused by a need for food or too much caffeine, but my mind still reels with fear.

Last night a storm woke me up at 2:30 and while I was awake I went potty. This is perfectly normal. But, after twenty-plus years of never sleeping through the night, I found myself spiraling the rabbit hole of angst.

Last week I had a particularly busy week that didn’t allow for my usual late-afternoon nap. After decades of seeking the refuge of my bed I’ve had a difficult time relinquishing its comfort and necessity. I did, however, make it through those busy days without any need for a nap. Yet, the habit still hangs around my neck like a heavy yoke.

A few weeks ago, with the onset of summer and warmer days, I went for my first paddle of the year. The next morning my muscles were achy and sore from exercise. My heart sputtered and my mind reeled with the bodily memory of years of pain in my bones and muscles. Moments later, relief washed over me as I remembered my pursuit the day before.

Yesterday, while recounting a story to my husband, I stopped abruptly mid-sentence. My mouth worked up and down, with no sound emitting, as I searched for the word I was looking for. I imagine even people who’ve never had Lyme disease search for words sometimes. That doesn’t stop the tingling fear from slowly rising up my spine.

I’ve been feeling nauseous all day today. I snacked on some pretzels but it didn’t really help. I stopped to take a break from writing and realized my nausea was directly related to this weekly dive back into my days in treatment. As soon as I hit Publish I know that the nausea will subside.

Thanks to antidepressants, and a lot of therapy, it doesn’t take quite as long to recognize what’s happening. When these flashes of symptoms pop up, rather than spinning out for a day or two, it may only take a few moments to calm myself down. But, the aftermath still remains.

The symptoms that may never go away

Unfortunately, I have a few symptoms that I may deal with for life. For instance, the floaties in my eyes and the buzzing tinnitus in my ears. Sometimes I don’t notice them at all. Other times I find them incredibly distracting. They have improved greatly from pre-treatment days but they’re still present.

On bad days I chase the floaties as though they’re flies buzzing my head. The ringing in my ears gets bad enough to necessitate turning up the TV.

Thankfully, those days are pretty rare. However, they’re still a constant reminder of the long battle I fought against an invasive, elusive and cruel disease. In some sense, I wear them like a badge of honor. They cause me to reflect on the multitudinous symptoms I defeated and kicked to the curb. An image of myself ruminates in my mind’s eye of myself as a warrior, wielding an ancient, gilded sword.

Be kind to yourself

Whether you’re still in treatment or in the aftermath of Lyme disease, be kind to yourself. It’s important to stop and recognize yourself as a warrior. You are fighting a very real battle against an enemy intent on invasion and destruction. Every day that you get up and forge onward is another day closer to defeating your invaders.

Since I started therapy for PTSD, I’ve systematically gone through my memories and hugged myself in those most scary of moments. I picture that scared woman and wrap my arms around her. Holding her hand, I tell her she’s going to be okay. I whisper in her ear that we make it through this moment. With reassurance, I tell her that we’re happy and thriving. It’s been a truly rewarding process.

Remember, we’re a community of Lyme warriors and our shared experiences make us stronger. What were some of your scariest moments? How did you cope through the pain and uncertainty? What are your greatest fears? Your greatest successes? I’d love to hear from you.