I get asked the same questions over and over again by friends, family and strangers who want to understand my disease better. The most common one by far is “what was life like before your diagnosis?”. This was my life…
I was a wife, mom to two dogs, had a full time job and slept about 14-18 hours each day. I could never get enough sleep! I was always failing in one area. If I was good at work I would be a horrible wife or a horrible student. This was so sad and frustrating as someone who puts 100% into everything. My 100% was not good enough. I would wake up and take a shower and want to go back to bed. I had been to MANY doctors in the Northern Nevada area and no one knew what I had. They gave me simple answers like it was all in my head or I needed to take medicine to manage all of my bizarre symptoms. I would take seven pills each day and two-three of them had side-effects that sometimes did more harm than help. My symptoms consisted of really weird sensation to touch on the back of my body. The slightest touch on my back would cause me to burst out in tears uncontrollably…because of this I avoided hugging people. I would get so anxious when it came time to meeting or leaving anyone because I hated the dreaded hugging part. I never knew if I would be in pain so instead I would leave or greet someone and come off a snob! It was the better of two evils at the time. The hardest thing about this weird sensation on my back was some days it would be so bad and painful that I couldn’t even wear clothing. I would have to call into work or cancel plans because I couldn’t get dressed! How ridiculous, right?!
Another strange symptom I had was the nerves in my eyes didn’t work together. I took one medicine that helped to dumb down the nerves so they could work together. While I was waiting for a diagnosis I had to stop driving and get rides everywhere because I couldn’t tell if cars were moving into my lane or what was going on. I included a video of my eyes when they were bad. If you look closely at my right eye it “jumps” when it tries to track my finger. This slight movement of my eyes not working together made life miserable.
I also had some weird things, like my body was extra sensitive to medication. When someone my size would take 200mg of a pill I would respond to 50mg of the same medicine. Doctors looked at me like I was a freak. It was embarrassing that I could not take normal people medicine and have it work for me.
Close to the time I got my diagnosis, I lost my balance. For work and play I would wear heels all the time because I am so short. One day I woke up and I just couldn’t walk while wearing them. It was so depressing. I had laid in bed so many days thinking if my body continues on this path and my back sensitivity continues to spread, it won’t be very long until I am stuck in bed or in a wheelchair. When I lost my balance this truth was quickly becoming a reality.
Something to keep in mind as I disclose my story and my life with Lyme – not all Lymies are created equal. This disease attacks the nervous system and it doesn’t ever act the same in people. The list of symptoms for Lyme disease includes almost any symptom you can think of. The best way to find a person with Lyme disease is look at their symptoms and see if it can all be traced back to the nervous system of the body (this includes that brain and everything else). A blood test is the true determinate of Lyme disease.