Climbing Off The Emotional Roller Coaster of Chronic Lyme's

by Lesley Paterson - World Champion Professional Triathlete, Lyme's patient, Paleo eater, and official member of "brought back from the brink by Dr. David Minkoff" club.

"It ain't about how hard you can hit. It's about how hard you can get hit and keep moving forward." Rocky Balboa

I often think that living with chronic Lyme’s disease is like a boxing match. Some days I’m in total control of the fight, my symptoms are under control, and I’m the boss of the ring (my body). Then out of the blue, BAM! I eat something odd, I swim in contaminated water, I get overly stressed or tired and suddenly a few symptoms rear their ugly head. I can go from hero to zero in 48 hours. On the Saturday, I’m just crushing the local group bike ride, but on Monday, everything just feels blocked -- like someone has a choke hold on my mitochondria and it feels like I have the flu. I can struggle to run at a 10 min/mile pace when the week before I was banging out a 5:45 min/mile pace while barely sweating. Now this doesn’t seem that bad, especially to my fellow sufferers who struggle on a much more serious level than I do…. even getting out of bed or a chair can seem like climbing Mt Everest. The reason that I get so stressed about struggling to run a 10 min/mile is that my mortgage payment depends on me running very fast – and a 10-minute mile ain’t gonna cut it.

However, by far the hardest part is the unpredictability of my symptoms and the massive dent in my athletic identity that comes with struggling to train like a professional athlete. Over the years, I’ve learned a valuable lesson in how best manage this roller coaster. I used to react to my symptoms in way that paralleled the 5-stage Grief Response discovered by Dr. Elizabeth Kubler-Ross. At first I would be in total Denial (stage 1). I would look to every reason why I felt a bit off, except the obvious. “Oh, it’s just that I’m over tired” or “I think it I might have bit of food poisoning” or whatever. When I came out of denial, I would get really Angry (stage 2). “Why now?” “I have a big race coming up, this cannot be f*****g be happening now.”  The anger would give way to Depression (Stage 3) (“everything is ruined,” “I just want to be left alone”) before I started Bargaining (Stage 4): “I swear, I promise to never swim in that lake again, or I will never eat food from that restaurant again, just please let this pass.” Of course nothing helped, so eventually I would reach Acceptance (Stage 5): “It’s Lyme’s. It’s back. We gotta deal with it.” On and on this cycle would go. Exhausting.

After years of being on this emotional roller coaster, I got so exhausted with it that I decided a better option would be to skip straight to Acceptance every time my symptoms reappeared. I can’t say I’ve fully mastered this, but I am a lot better at it! One technique that has helped me skip straight to acceptance is meditation. I never considered myself the meditating type (whatever that means!). But meditation helped me stay in the present -- to see the thoughts associated with my symptoms as simply that, emotional reactions to a physical state. I made a choice to first welcome, not fear, these thoughts but then just chose to let them float past.  It was as if they were dark clouds I was watching pass over head before choosing to see blue sky again. My symptoms remained, but my outlook changed. I only mediate for 10 minutes a day but it really helped. I use a great little app called HeadSpace, but there are plenty of other apps and tools out there to teach you the skills. In essence, I trained myself to accept acceptance.

So, here’s a new challenge to those of you tired of being on the emotional roller coaster. Train your brain to accept your symptoms and to keeping moving forward with life. Yup, who would have thought it? Words to live by from Rocky Balboa.  Lesley P.