One year ago, I was diagnosed with Lyme.
And I still can remember all the difficulties I faced as my Lyme progressed from annoying symptoms to full-blown pain, brain fog, dietary issues, weakness, and exhaustion, and finally, being out of work for six months.
I can remember early on, trying to keep a semblance of routine at home and make my daughter’s lunch for school. That 10-minute job caused me extreme exhaustion, and a return trip to bed for two hours.
I remember trying to exercise on the advice of medical doctors, which never went well. Later on in that winter, I tried vacuuming a 5×7 rug. I needed a three-hour nap after that.
I remember starting what I call my Lyme Bible. It contained sections with each doctors’ contact information, copies of my blood work reports, diagnoses, as well as my food diary and symptoms tracker.
I remember my husband asking me one morning, “Where is the jelly?” And I literally did not know. I couldn’t tell him, and I got upset because I knew my brain was literally fading a way bit by bit, and there wasn’t anything that any medical doctor was telling me that was helpful or hopeful.
I remember being frustrated listening to people with MD after their names giving me any number of diagnoses: Lyme, not Lyme, fibromyalgia, coxsackie, EBV, a virus…and even, “Yes, you have Lyme, coxsackie, and EBV in your blood work, but we don’t know what is causing your symptoms. Just eat right and exercise.” I’ve got letters that I’ve started that I intend to send to all these medical professionals to both ease my conscience and anger, but also potentially change how they actually address a patient’s course of treatment when they have Lyme disease.
I remember hearing about a holistic practitioner that helped a cancer patient who had tremendous results after major health issues. At that point, I was ready to find a new avenue that didn’t lead me to another medical doctor whose hands were tied against me.
I remember thinking during my first appointment, his methods seemed so strange and out of the box in terms of medical treatment as I knew it, and yet, after only 4 months, I was back at work full-time and able to conquer my full teaching day without turning into a puddle by 10:30 am!
I remember feeling so tired from work, I was in bed by 5:30, and still not rested to face the next day. Squeezing the shampoo bottle in the shower bothered my right thumb, and drying my hair with the hair dryer made my elbows hurt tremendously. Even driving would bother my elbows. And reading…forget it. After ten minutes, I could feel my mind drifting away from the words on the page.
I remember a time last year when I didn’t put the my prized under-the-counter radio on when I was in the kitchen. It’s presence changed from a comfort to just noise. The feeling of wanting music on had left me, and it didn’t bother me for many months that I didn’t put the radio on to keep me company.
Tonight, I connected my Bluetooth Pandora on my phone to that radio. I listened to a Martina McBride holiday channel, and I sang along to almost every song. It was like a drug to me; I realized how much I had missed my music and I finally had the chance to enjoy it again. I had to force myself to turn it off and go sit down when tiredness of the day trumped the music.
As I am writing this, I am thinking of how fortunate I am that my health has returned almost to normal and I am enjoying things that I couldn’t do a year ago.
What a difference a year makes!
Yours In Lyme Adventures,