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Recovering from Lyme Disease Is Like Climbing the Basement Stairs

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I had my first visit with a Lyme-literate doctor last June. He listened to my story, the details of my health struggles, understood the pain and the long months of going undiagnosed. Then he offered me hope. He told me that I have Lyme disease and that he knew I could improve. I have since visited him every six to eight weeks. I’ve been told the same thing several times: It took you a while to get down into the basement, and it’s going to take you a while to climb the stairs back out. Every symptom you have had will flare back up. And the last symptom to leave will probably be the first symptom you had.

You see, Lyme is so difficult to diagnose. What started out as a horrible backache slowly changed into so much more. Every few weeks a new symptom would appear. Stiff neck, numbness, nerve pain, tingling, muscle pain, eye floaters, joint pain, anxiety, depression, unable to sit, and the list goes on. I saw doctor after doctor. I was diagnosed with a wide range of issues ranging from slight bulge in a disk to it all being in my head. There was “nothing wrong with me that would cause me to be in the pain that I was in.” For over a year I slowly descended into the “basement.” The basement was a dark place that I hope I never return to again. It’s hard to even let my mind go back to that time.

But I’m climbing the stairs back out of the basement. My doctor told me I would experience it all again. And I did. And I still am.

There was no magic pill to take to make me better. The antibiotics and IV treatments created a Herxheimer reaction. It’s the Lyme rearing up and fighting back against what is trying to
make a person better.

Standing in the darkness of the basement I looked up for the sunlight at the top of the stairs. It was so hard to see. It was a tiny glimmer of light, of hope. The first steps up were full of wondering if I would ever feel improvement. It was a struggle. It was pushing myself to
believe that the treatments were helping me. It was exhausting. It was painful. It was scary. There was no magic pill to take to make me better.

But my family was there with me every step. They encouraged me to rest. They drove me to my treatments. They cooked and cleaned. They listened to my pity parties. They were always there pushing me up, encouraging me to believe. My friends sent cards, texts, and asked about my health. And slowly I noticed little changes. I noticed that I could sit down and eat dinner without hurting. I noticed that I could staple some packets at school and it didn’t bother my back. I continued to climb. Each step was like a mountain to climb.

The improvements happened so slowly. It was sometimes hard to tell that I was feeling better. It was more of a reflection of, “Last year I couldn’t do this, now I can.” Or, “A few months ago I couldn’t go to the grocery store, but now I can.” It took months to climb a single step. The new antibiotic threw me back into brain fog and constant fatigue and wanting to sleep all day. But then I would notice that I could ride in the car for more than 20 minutes. Slow and steady. As long as I am climbing up, up, up!

I think that I am well over halfway up the stairs now. I can see the top! I’m getting closer to my goal. I still have symptoms. I still have pain. And I still have Lyme. But I have learned so much about myself on this long journey. I have learned so much about the power of positivity. I have learned simply to believe I will make it out of the basement.

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Thinkstock photo by serpeblu

Originally published: March 31, 2017
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