The Valuable Lessons I've Learned While Living With Lyme Disease
Lyme disease has become a major health crisis, and it can be a very controversial topic. Most doctors still don’t understand Lyme disease enough to properly diagnose it, let alone treat it. Given this information, there are hundreds, if not thousands, of individuals walking around with Lyme disease who don’t even realize it — and I was one of them.
At some point in the past few years I was bit by a tick, and since I don’t recall ever being bit, it was most likely a nymph – which is about the size of a poppy seed. At that moment, little did I know, my life would be forever changed. The Lyme spirochetes went straight to work by drilling into my tissues and viciously spreading throughout my blood to eventually infect my joints, nerves, cervical spine, and central nervous system.
By the time I was diagnosed with Lyme disease, I had seen over 10 specialists, including neurologists, rheumatologists, spine specialists, orthopedic surgeons, physical therapists, and a cardiologist. I underwent numerous MRIs, CT scans, X-rays, EMGs (my least favorite of them all), and hundreds of blood tests. Doctors had thrown around the idea of rheumatoid arthritis, lupus, fibromyalgia, or multiple sclerosis. No one could figure out a diagnosis, but everyone agreed on one thing…there was definitely something wrong with me.
Over the course of a year and half my symptoms included: numbness and tingling, severe neck stiffness and pain, joint swelling and pain, bruising, neuropathy, costochondritis, bladder cystitis, paralysis, muscle weakness and spasms, hemiplegic migraines, vision problems, loss of appetite, nausea, brain fog, insomnia, fevers and chills, anxiety, mood changes, hypoglycemia, tachycardia, and myoclonic seizures. The symptoms often migrated, were unpredictable, and could last for days or weeks at a time.
During my journey to a diagnosis, I spent several days helplessly crying in my bath tub because the pain was so severe and my medications weren’t cutting it. I wanted to go to the hospital, but I knew there wasn’t much they could do for me since no one knew what was wrong. There were low points when I really thought I might be dying. But, even on the bad days, my illness does not define me, and moments of weakness do not make me weak. Through God’s grace and a lot of self-care, I have transformed my weaknesses into strength and courage which has helped to carry me through each minute, day, week, and season of my life.
I was eventually referred to a Lyme Literate Medical Doctor (LLMD) in Wisconsin who clinically diagnosed me, and confirmed the diagnosis through more detailed blood work from Igenex. Up until then, I had tested negative on the standard Lyme disease blood test, so I was told by a handful of doctors that there is no way I could have Lyme disease. I knew something was very wrong with me, and I continued to follow my gut until I received a proper diagnosis. I am grateful that my illness was found, but there are so many people out there struggling in Lyme limbo, and I can only hope that they find the help they need through more advocacy, research, education, and policy changes.
Just before the Lyme symptoms came on, I was the poster child of healthy living. I drank green juice daily, threw back wheatgrass shots, cooked organic homemade meals, practiced hot yoga, and ran several days a week. I spent the remainder of my days working as a marketing manager and playing with my energetic toddler and puppy. My life completely changed that day I was bit by a tick, and if it can happen to me, a healthy, young mom from Chicago, it can happen to anyone. To this day, most people don’t realize the deep impact Lyme has had on my family – emotionally, physically, and financially. My hope and wish is that people become more aware of Lyme and other invisible illnesses, so we can work together to develop better prevention, testing, and treatments.
Its been a wild ride, to say the least, but I’ve learned many valuable lessons along the way that have helped me gracefully handle the day-to-day challenges of living with a chronic illness.
1. Get out of bed.
This one is easier said than done, but when you are dealing with a physical (or mental) illness, the first few minutes of the day are the most crucial for setting the tone. If you can make an effort to get out of your bed as quick as possible, you can drive your day with more motivation and energy. The longer you lay around, the easier it is to fall into a pit of despair, fatigue, and anxiety. If it helps motivate you, choose a positive affirmation or two to repeat each morning upon waking.
2. Self-care is not selfish.
One of the best things you can do for yourself when faced with an illness or challenging time is to up your self-care game. It is not selfish to set aside time to take care of your mind, body, and spirit. Get a massage, book a pedicure, curl up with a good book, meditate, visit a himalayan salt cave, go shopping — whatever translates to relaxation for you, make sure to add more of that to your life.
3. It’s OK to say no.
When living with a chronic illness it is important to choose your activities wisely. If you aren’t feeling up for something, even if you already committed to it, it’s OK to back out. Changing plans because of how you feel doesn’t make you a shady person, it makes you a strong person for putting your health first.
4. Protect your energy.
When you are battling a chronic illness, it takes more energy than normal to complete daily tasks. Don’t let your precious energy get depleted by others. Energy vampires are real and they can drain your life force quicker than you cant count to 10. If someone in your life is constantly negative, needy, or you just get that overwhelmed, drained feeling around them, it might be best to avoid your exposure to them during your healing process. Energy vampires can feed on what little energy you have, which will only leave you feeling more fatigued and deflated after any type of contact with them.
5. Just breathe.
When you are dealing with physical pain or discomfort, your body can naturally become more tense as a result which can lead to labored breathing. If you can make it a point to take cleansing breaths throughout the day you can reenergize your body and mind by releasing stale air to clear space for fresh oxygen. If any moment throughout the day feels too overwhelming or challenging, come back to your breath and breathe it out because “this too shall pass.” In through your nose and out through your mouth.
6. Don’t sweat the small stuff.
When you don’t feel well, even the simplest of tasks can seem daunting. Don’t let the little things add weight to your already heavy load. It’s OK to leave the dishes for the next morning, or let the clothes sit in the dryer a little longer. Whatever task is staring you in the face will still be waiting for you tomorrow, and the next day, and the day after that, so rest up and take your time!
7. Kids and pets provide free therapy.
On some of my worst days, it was my 2-year-old son who provided the “best medicine” by giving me a hug and telling me that “everything was going to be OK.” Next time you are feeling sick or defeated, try spending some time with a child or puppy. It is amazing how quickly your mood can change. Their innocence and love can magically pull you out of your misery or pain. The pure compassion a child or pet can offer is stronger than words can describe.
8. Positivity is key.
Your beliefs become your thoughts, your thoughts become your words, and you know how the rest of that goes. Your body hears every single thing your mind says, and with the average human having around 60,000 thoughts a day, that’s a huge opportunity to either tear yourself down, or lift yourself up. Feed your brain with positive fuel it can use to help combat your illness and energize your soul. Keeping a daily journal of positive affirmations is a great way to reshape your mindset.
9. Stress management is crucial.
Stress wreaks havoc on the gut, which in turn can lower the effectiveness of the immune system – see where I’m going with this? With over 70 percent of your immune system located in your gut, when dealing with a chronic illness, it’s crucial to get your stress under control. Prioritize your time and tasks, and don’t overwork yourself. Try utilizing a wall or pocket calendar to keep track of tasks so you can better visualize what your day and week will look like ahead of time. Some people find it beneficial to work with a professional such as a counselor or health coach to help manage their stress and set realistic goals.
10. When life gives you Lyme, make margaritas.
When you are faced with a chronic illness or any adversity in life, you always have two choices. You can either throw a pity party, or you can embrace your situation and make the best of it. You can train your mind to see the good in everything because positivity is a choice. When faced with chronic illness, I refused to be sidelined in my own life. Even though my margarita may be virgin these days, I still love a good party and quality time spent with family and friends. Some days are more difficult than others, but I continue to show up in my life for the people and things that matter. After all, love and laughter heals the soul.
“They” say what doesn’t kill you only makes you stronger. This sentiment could not be more true when it comes to Lyme disease or any chronic illness. Just remember that you are stronger than you know and braver than you think. So, raise your full glass and cheers to health, healing and happiness!
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