What Does It Feel Like?

As a recovering Lymie, I get asked a fair amount of questions regarding my condition. The most commonly asked question is, "What does it feel like?"

Sometimes the symptoms aren't very strong, and sometimes they're so strong that it takes all of my energy to have one conversation, walk up stairs or get out of bed. Before the diagnosis, Lyme made me feel absolutely dreadful all day and all night for years and years. I just sucked it up and blamed myself; maybe I worked too hard at the gym, maybe I didn't drink enough water, maybe I didn't take enough vitamins, maybe I was stressing too much. But when opening a car door, holding a purse or walking down the stairs made me cry from pain, I knew I needed a doctor's opinion. I had a feeling the prognosis would not be pretty.

My "problem child" symptoms are joint pain, muscle pain, migraines, severe fatigue, nausea, heart palpitations and vertigo. Now that I'm healing, I only have a couple symptoms at a time, and they fluctuate. On a bad day a couple years ago, I could hardly sleep because of the unbearable joint and muscle pain, and I lost my joy in life due to the neurological problems. I couldn't tie my shoes or open doors, or fit rings over my fingers. Walking to the bathroom felt like running a marathon after being beaten head to toe against a brick wall with a baseball bat. I cringed when others stared at me limping helplessly and struggling to open a Ziploc bag. I just wanted to be normal again. This is because I was misdiagnosed with Rheumatoid Arthritis, and was taking immunosuppressants, which were killing me. I was preparing myself for the reality that I would not make it to my 30th birthday. "I'm doing what the doctors are telling me, and I'm dying anyway," was my rationalization. I didn't realize it was their mistake.

But now that I'm actually receiving proper treatment, a bad day means moderate joint pain, a migraine, loss of appetite, sadness or insomnia. It may sound crazy, but it's actually a massive improvement. Because a couple years ago, I felt like I was dying. And according to the electrodermal test, I was; my organs were literally shutting down. Lungs, pancreas, heart, brain, muscles, thyroid, pituitary gland, thymus, lymph nodes, small intestine, large intestine. All compromised and functioning at less than half their potential. It was excruciating and terrifying to come to terms with my mortality. I'm so thankful to just have a sleepless night or a migraine instead of excruciating pain. I'm lucky to be alive.

I didn't make this post to whine or get sympathy; I simply want to raise awareness of Lyme symptoms and make it more relatable and less foreign. If you aren't familiar with Lyme disease, it's easy to have no idea what a patient goes through. But all I ask is that us Lymies get your respect, because we've already earned it.