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A Day in the Life of Someone Navigating Chronic Lyme Disease Treatment

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The Centers for Disease Control estimates that each year, 300,000 people are diagnosed with Lyme disease in the United States. The CDC claims 60 to 80 percent of people develop the classic bull’s-eye rash; however, this number could be a huge overestimation. Over 56 percent of patients with Lyme disease test negative using the testing system recommended by the CDC. Due to the lack of awareness, inaccurate testing, and widespread symptoms many doctors misdiagnose Lyme disease leading to several dead ends before a patient finally obtains answers. I was lucky and only had 19 doctors’ appointments and one ER visit before getting diagnosed.

This is the story of just one day in the life of one of many trying to navigate the turbulent waters of Lyme disease treatment.

It is morning after about eight hours of sleep; man I wish it had been 12 hours or maybe even 14.

Too tired to get up, four snooze alarms later and I can barely drag myself out of bed.

Time for my first round of medication — five morning pills and 10 drops under the tongue.

Fast forward through the morning routine including one shower that causes lightheadedness and heart palpitations, two instances of poor fine motor control while putting on makeup (did my makeup brush really fall in the toilet again!?), and one episode of retracing my steps to make sure I didn’t forget anything.

I finally make it to work. Despite my history of being an extremely punctual person I am now falling behind five to 10 minutes on a good day. Ugh, I bet the people who watched me walk in late think I am a lazy, good-for-nothing employee. I try, I really do. I am just so much slower these days.

In the solace of my office I find three new charts to process, work that I can thankfully manage with my day-to-day symptoms. But after two hours at the computer the lights are too bright, the floaters and tinnitus are making it hard to focus. Push through.

Mid-morning, time for two more pills, along with one cup of detox tea. I’ve learned to ignore the chest pain and heart palpitations. Mostly.

It’s now time for lunch and my friends are approximately 1,200 steps away but my symptoms are in full swing by now and the blurred vision, dizziness and lightheadedness make me feel like a drunken sailor trying to stumble home. I don’t think I could fake it with them today. The anxiety is starting to set it and I’ll likely just have a panic attack. Another eight pills and lunch by myself.

I dread afternoons. During those hours at work is when I feel the worse and when I have to fake it the most convincingly. It’s 1 p.m. and I’m sitting with a client trying to engage, but my head is foggy and my vision glazes over and my body feels heavy. Here comes the wave of dizziness. Oh God, I feel like I am going to pass out. Please don’t pass out in front of this stranger and embarrass yourself. Pulse monitor reads a pulse of 120. I want to escape, to give up and go home and sleep. But I push through. It takes 10 internal pep talks and three hours of white knuckling it, but I persevere. This disease will not beat me.

Finally, I get to go home. As a survey my house I notice three to five things that need to get done, but I simply do not have the energy. Instead, I lie on the couch and hope I have it in me to make dinner tonight. Another 20 drops in water before dinner.

About this time the air hunger sets in. My boyfriend jokes that we can’t just have air for dinner and I laugh and appreciate that we can both be lighthearted despite my struggles. I trudge through dinner preparation with at least five sighs and an equal number of offers from my boyfriend to help. He makes a delicious peanut butter sandwich, but I think we both know who the better cook is at the house.

After dinner there’s another five pills.

If it has been a good day we try to go to the gym and I feel triumphant completing 50 minutes of physical activity. I think fondly back to the days last year where I was pushing myself to leg press 900 pounds and wonder how long it will take me to get back to that point. I look at myself in the mirror and am ashamed of what I see. But I am sick, and getting well has to be my top priority.

Hallelujah, it is time for bed. Another seven pills and I lay there counting my 1,000 blessings. I may be sick today, but I am thankful that I will one day be well. I am thankful for an amazing partner that has been my rock throughout these struggles. I could not have survived the bad days without him. I am thankful for my family and friends who have been supportive and caring. I am thankful for the moments of joy I find in each day and for the hope that keeps pushing me forward. I am lucky for the life I have despite the hardships, and I am strong enough to overcome this. I am counting down the days.

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Lead photo by Thinkstock Images

Originally published: January 17, 2017
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