One year ago today I was sitting at my desk when I noticed a voicemail notification. I tapped to listen to it and it was the doctor I had seen the week before. “Your blood test came back as positive for Lyme Disease.” My heart dropped. I retreated to the hallway at my job and immediately called back my doctor. He said based on my bloodwork, I have had Lyme Disease for quite some time. I scheduled an appointment to see them again about treatment, and I sat back down at my desk feeling disbelief, shock, and confusion.
I’ve learned a lot since April 10, 2018. When I first got that call about my Lyme Disease diagnosis I barely knew what it was, just that you can contract it from a tick. But here I am, a year later, feeling better than this time last year, and having learned so much from living with Lyme Disease.
Last year at this time I constantly felt like I had a fever, was almost always dizzy and had frequent spouts of vertigo. Something felt very off and I knew I needed to find out why. I’m lucky the doctor I went to tested 12 vials of my blood that day, one being for Lyme Disease. I remember the nurse practitioner mentioning if I’ve ever been tested for Lyme Disease in my initial checkup, and I remember saying no and not even giving that possibility a thought.
When I heard the voicemail that revealed my diagnosis, I didn’t know what to think. Can Lyme Disease kill you? How long will I have to deal with this? What does Lyme Disease treatment entail?
First, it was telling my mom, who didn’t know how to respond. We were both wondering if it was serious because neither of us knew anything about it. I called my boyfriend, Mike, and he was relieved I had found out what was wrong with me, but he was unconcerned with what he thought Lyme Disease was. Neither of them, including myself, knew what was coming.
What was coming was months of antibiotic treatments, months of me having more bad days than good days, months of me missing work and other commitments, months of pain, discomfort, and exhaustion. What lay ahead of me was lots of research and learning, getting used to my new “normal,” and rest. So much rest.
What no one told me about Lyme Disease (about Chronic Lyme Disease) was that I would still be feeling symptoms after treatment. Lyme Disease is not a one round of antibiotics and done illness; once it has been inside of you long enough, it’s THERE. It burrows its way into your cells and hides from antibiotics and other treatments and moves around stealthily from one part of the body to the next so as not to be detected.
I’ve been thinking a lot about me then vs. me now, and what I have learned about Lyme Disease, myself, my body, my relationships, and my future. Here’s what I would say to myself one year ago:
“Breathe. You will get through this, but be prepared. You must be prepared to make some changes for your health. You must be prepared to feel worse before you feel better. You will not do this alone. Mike will always be there for you and support you on your very worst days. Your job is not at stake, they will work with you and make sure you are doing what’s best for your health. You will find a doctor who has knowledge about treating Lyme Disease, and who cares about you as a patient.
Just breathe. You will still have a social life, but you will stay in much more often, and that’s okay. Learn to listen to your body and trust what it’s telling you.
Some people in your life are going to understand this, and some won’t but that is ok. You will never be alone in this and screw those who doubt you or don’t take it seriously. YOU know what you are going through and that’s all that matters.
Remember to breathe. Remember to take one day at a time. Remember to find moments that bring you joy. Remember that the pain won’t last forever. Remember that tomorrow is a new day.
Breathe, because you will get through this, and you will be stronger because of it.”
. . .
I wouldn’t say I am in remission, but I would say I’m closer to it than I was one year ago. I’ve found healing in all ways one can find it, and I make small steps every day to get back to who I used to be.
I am not my Lyme Disease. I am a person who has Lyme Disease but knows that there is still living to do.