Community for Lyme Warriors

One of my biggest complaints from the time I spent in treatment was the lack of community for Lyme warriors. That’s truly why I started this blog. For those who are in the midst of battling it, it can feel really lonely and scary. I know that I felt scared and alone for the better part of two years. At a time when so many strange and inexplicable things are happening to your body, community is important. I needed a single outlet where I could read about others dealing with what I was dealing with. I hope to create that support network here.

Searching for Answers

I spent countless hours googling the strange things that were happening in my body, just to know that I wasn’t alone. Or, that I wasn’t going to die. Weird things like, “black tongue and Lyme disease”, “left side aches and Lyme disease”, or “does the moon make Lyme disease symptoms worse”. I would end up down crazy google machine wormholes without ever finding what I needed. Support. Recognition. Validation.

So, I’m here asking you, “What do you need from me? How can I help you feel less alone?” I’m also here to listen and provide support. I may not have experienced everything you’re experiencing but maybe I know someone else who has. Or, maybe I can help you find some answers. Really, I want you know that you aren’t alone.

This is Not My Body Anymore

While I was writing my book one sentence kept coming up over and over in my journal. I feel like the shell of the person I once was. Lyme disease had taken everything from me and left me feeling empty. I felt vulnerable, like a delicate blown-glass vase. One step in the wrong direction and I would shatter to pieces. For this reason, I worried constantly. Fretting over what I should eat, if I should try to exercise, making sure to take my meds diligently. I’m sure I’m not the only one who felt that way. Reach out to me. I want to share my fears and here about yours.

This is Not My Mind Anymore

Not only did I lose my health but I also lost my essence. I lost joy and excitement. Then, when my doctor put me on Samento and Banderol, I literally felt like an empty vessel lost at sea. My days were filled with dread and fear. So often, by the middle of the day, I found myself asking if this day could just be over already. “I’m done with this day, can we move on already.”

If you find yourself feeling similarly, know that you aren’t alone. You are not lost at sea. If you look around you you’ll find hundreds of other boats drifting along side yours. Rest assured there are others who can’t recall the word ‘contact’ or ‘similar’. There are others who got lost driving to the grocery store they’ve been driving to weekly for years. I know, I was one of them. Your mind will come back. But until it does, we’re here with you.

Resources

My battle began in 2017 and a lot of progress has been made in the Lyme disease community since then. My go-to when I was sick was Lyme disease.org. It is still one of my favorites for finding real stories and real information. I also found good information at Tired of Lyme.

However, the thing I was really looking for was difficult to find. I needed to hear from other people like me. To know that someone else had to get up in the middle of the night, change clothes and put a towel down in their bed because their night sweats were so bad. I needed to hear that the sun made your heart race too or that you would become enraged by the sun shining through a crack in your curtains while you were trying to nap as well. So, let me hear your stories, your fears, your bizarre symptoms. We don’t have to be alone in our suffering. There is a vast community of Lyme warriors. I hope you’ll reach out.