Monday, March 11, 2019

When Lyme Bloggers Stop Blogging - They Got Their Life Back!

When I was first very sick and doing hours of research on-line about Lyme disease and trying to figure out what was wrong with me, I noticed a trend on Lyme blogs. Often there would be a big gap between posts or, there would be a post from a couple years ago and then no more. I got frustrated because I desperately needed to read about how the story ended. Where did this person go? Did he/she get better? Did he/she get worse? What happened?

Now that I have been in the Lyme trenches for ten years, I understand what happened. Lyme treatment and healing is a full time job, so writing blog posts takes a back seat. The Lyme journey is extremely traumatic and personally, as I began to get better, I wanted to focus all of my energy on healing. Whether that was positive meditation, gentle yoga, time spent with family and friends (time that had been lost in the depths of my illness), or just enjoying a slow walk for exercise, I wanted to forget about all things Lyme for a while.

It's been three years since my last post and much has happened in that time. I am working part time for the Lyme non-profit where I was volunteering, running a state-wide tick prevention educational program. I got married! I wrote and directed a short film that is still playing in film festivals. All of this while managing what is now a chronic illness. While I finally climbed my way out of the deep, dark hole of the worst of the illness, I am still dealing with residual effects of all of the meds, an ongoing Epstein-Barr infection and debilitating migraines. Being sick is one battle, being on the road to recovery and working/joining life again is another (enough for another blog post!) But I am not in bed every day, the way I was when I started this journey and blog.

I share my accomplishments here because if you are reading this and feeling like your life is over and Lyme has robbed you of everything you thought you would do, I'm telling you that you can still achieve your goals. It's just that you took a big detour and your road to those accomplishments will be different. As we say in the Lyme community, it's your "new normal." I never thought, ever, in the depths of my illness that I would not only be working again, but getting married and making a film. Filmmaking/acting was the dream I was living/pursuing when I first got sick and I was certain that part of my creative life was over. And interestingly, it was the quiet time forced upon me by illness that turned my energy towards writing (I had been focusing on acting), which turned into my short film. I ended up where I wanted to be but took a very different road than I thought I would take. I fought it sometimes along the way while battling Lyme, but once I gave over it was much easier.

So go easy on yourself in this moment. Don't stress that your life "is over." It feels that way because you are trying to survive an illness that is debilitating, scary, painful and isolating. But don't give up. I wanted to, oh how I wanted to give up so many times. There were days I fantasized about throwing all of my medicines out the window and just disappearing in my car. But I'm back here writing another blog post after three years of being lucky enough to just live my life and, if you're reading this, I came back to write this for you.


  1. That is a welcome post Amy. Thank you

  2. Great post Amy. I’m so happy for you. Sending love for continued health!

  3. So happy for you and proud of you that I could burst! xoxo