Enter My "Lyme-Machine": Tips from my future self for tackling Lyme disease
Living with Lyme disease has taught me so much about my body, health, and lifestyle. Reflecting on my journey leaves me wishing I could take a time machine back three years to teach myself what I know now before I started treatment. Unfortunately, I do not have a time machine so I've decided to create a "Lyme Machine": a way to share my experiences so others can start their journey equipped with the tools they need.
My hope is that sharing my experiences will help you or your loved ones accelerate your path towards healing. I'll start with some practical advice that I have learned and mastered through my Lyme treatment.
Recruit an Advocate
Chronic Lyme disease can be lonely, invisible, and misunderstood. One of the major themes you hear when a Lyme patient talks about their experience with the illness is that their relationships suffer. They feel like they are constantly needing to explain the disease, their situation, and prove that they are truly sick to friends and family. An advocate is someone healthy who will:
Listen to your symptoms and trust your experiences, even if they don’t always understand them
Attend doctors appointments and help you synthesize information, follow treatment protocols and identify areas of your health you can reasonably focus on
Do research on Lyme disease and learn what they can to support you in conversations with friends and family
I wish I would have done this more deliberately when I was sick, but I was lucky to have a family that supported me. Reach out to a friend or family member and ask them to be your advocate.
Find some control
Lack of control is one of the top stressors in life. It is easy to feel like you don’t have control over this disease, but you do. Find ways to control the things you can and let go of the things you can't. You do have control to listen to and trust your body. You can stop treatments that you don't feel are working, find a new doctor if you aren't happy, and treat your body and mind well through mindfulness, nutrition and exercise. A great way I have found to do this is to track my symptoms and treatments to get data around my disease. Even if I don’t always understand why I’m feeling the way I do, at least I can accurately represent how I have felt to my caregivers. Your advocate can support you with this too!
Ask for Help
Be gentle with yourself, you are doing the best you can and needing help is completely human. Throughout my treatment, I was always hearing from friends and family that they wanted to help but they didn’t know how. My instinct was to reassure them that everything was OK but, over time, I realized that attitude didn’t help anyone. I finally started asking for help on specific things and we even created a YouCaring campaign which helped to completely turn around my treatment and health.
What does this look like in your normal day? Ask a friend to walk your dog for you or bring you over a meal. Hire someone to clean your house (it’s OK). If your brain is too foggy and you’re too tired, but you need to get groceries and pick up your kids, see if someone else can grab the items while they are on their own shopping trip and drop off your kids while picking up their own.
Learn to make your world small
Dr. Rawls at Vital Plan offers good advice on this topic. We are in a unique life situation with chronic Lyme disease. Our bodies are in a constant state of stress and inflammation. A positive way to help reduce our automatic stress response is to learn to make our world small. This means cutting out the horrific news, turning off the loud music, and removing yourself from drama and high-stress interactions. Even stop watching TV shows that have negative, triggering content. Unless something directly affects you as an individual and there is an easy-to-implement solution to address the issue, it doesn’t belong in your life right now. The only important thing is healing and creating a calm, low-stress environment for yourself. The rest can wait until you have the emotional and physical resources!
Just Keep Moving
Looking back on my treatment time, not moving is definitely my top regret. I’m not saying it’s easy - most days I was so tired that I couldn’t get out of bed and was lucky if I could shower and brush my hair, but its important for every system in our body to continue to move. Even if it’s a short walk, 10 minutes on a stationary bike with no resistance, stretching, or rebounding on a trampoline - anything to get your lymph system moving and blood flowing. Nature is your friend so even being outside and getting fresh air will do wonders for your health and your mood.
The road of Lyme disease treatment is winding and bumpy with far too many hills and detours along the way. You may not be able to do everything all of the time but you will learn to navigate it. And you will be able to share those lessons with others through your own Lyme Machine.