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Learning How to Survive

Living with Lyme disease can be a long and arduous journey, filled with struggles, disappointments, and frustrations. As someone who has felt like finding the solution to getting healthy feels like surviving a never-ending carousel of doctors, I know the struggles all of us Lyme patients go through. For years I struggled with Lyme symptoms, but all the Lyme tests came back negative. I thought I was crazy. I had very little energy, increased joint pain, damage in my knee, and severe neurological problems. Finally, I was diagnosed with Lyme disease when I was in eighth grade, and I have spent the past five years trying to accomplish my end goal of getting healthy ever since.

When I first got sick, I went into the journey with full positivity and a clear future path still in sight. I was just happy I had found a doctor who believed me and promised relief. Things quickly changed as I realized getting healthy was not as simple as my innocent self thought. My life rapidly changed from my preconceived normal to my “new normal” as I switched from traditional school to homeschooling. At that time, I could not do even two hours of schoolwork daily. I thought I would never graduate as I could barely do school and had to manage 8-hour IVs every week along with all the other medicines I was taking. While I was fighting the Lyme, the Lyme was fighting back. I had a fever for two years straight and always felt like I had the flu, but I had no choice but to keep going.

A few months after I switched to homeschooling, COVID-19 hit, and the whole world was isolated. I felt alone and not alone simultaneously, as everyone around me also adjusted to this new isolation. It was not until things started to become normal again did I realize quite how isolating homeschooling was. I was at my worst and needed to figure out how to get myself out of it. Although we all have support systems, seen and unseen, we must help ourselves to be able to let others help us. 

Throughout my battle with Lyme disease, I discovered five strategies that played a pivotal role in helping me navigate through the darkest moments and regain my positivity. In this article, I share these strategies in the hopes that they may provide comfort and support to others facing similar challenges.

1. Pursue Your Passion, Even in Small Steps

When I was at my lowest point, bedridden and barely able to walk, I found solace in playing tennis, my beloved sport. Starting with small steps, I would go to the tennis court and simply absorb the atmosphere. Over a very excruciating amount of time, with the unwavering support of my tennis coach, I gradually regained strength and pushed my limits. Even if it feels impossible, try engaging in something you love, no matter how small, to break free from the confines of your world. Embrace the feeling of normalcy and build upon it.

2. Leverage the Power of Support Systems

During treatments and on bad days, it’s crucial to remember that you are not alone. Reach out to your friends, as they can provide invaluable emotional support. Sometimes just having someone to coexist with is enough. If physical visits are not feasible, explore virtual connections. Arrange video calls, engage in fun activities together, or simply spend time conversing. Support knows no boundaries, and knowing that you have people there for you can make a significant difference.

3. Prioritize Self-Care

When we are unwell, self-care often takes a backseat. However, making a conscious effort to care for yourself, both mentally and physically, is essential for progress. Treat yourself to a luxurious bath using bath bombs, lavender salts, or Epsom salts, turning a mundane activity into a rejuvenating experience. Additionally, establish a skincare routine that suits your needs, even if it means simplifying it on regular days. On particularly difficult days, go the extra mile and indulge in all the steps that make you feel hydrated and refreshed.

4. Escape Through the World of Books

Discovering the joys of reading became a transformative experience for me. Books became a portal to new worlds, providing temporary respite from my reality. Reading purely for pleasure, without any specific purpose, allowed me to step away from daily struggles and immerse myself in captivating stories. Choose any type of reading material that you find enjoyable, and let it transport you to a different realm, if only for a little while.

5. Alleviating Your Symptoms

One of my most distressing Lyme disease symptoms is debilitating headaches. To alleviate this issue, I found relief through various means. Consuming caffeine in the form of high-quality, low-sugar dark chocolate or enjoying an iced coffee with oat milk provided me with some respite. However, if you want a more traditional route, I suggest essential oils, as they have proved to be an effective remedy for relieving my headaches. Not everyone’s symptoms are the same. What works for some will not work for all, but do not be afraid to try things and see what will make your top five list. 

Living with Lyme disease can be an ongoing battle, but it’s important to remember that it does get better. Take each day one step at a time, paying close attention to your body’s signals and limitations. Allow yourself to be vulnerable and seek comfort from those willing to help you. Remember, you don’t have to face these challenges alone. With time, support, and perseverance, you can overcome the hurdles that Lyme disease presents.

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The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. 
GLA Contributor

Lucia Zugel

GLA Contributor

Lucia Zugel is an 18-year-old girl from Holmdel, New Jersey, who has recently graduated from High School. Although she was diagnosed with Lyme and Bartonella when she was 14, she believes she was born with it as her mother has also battled from Lyme for a prolonged period. As a GLA intern, she hopes to spread awareness and hope to all those suffering.