This article was first published on the Global Lyme Alliance blog on June 12th, 2017. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
This morning my co-worker walked around to each of our offices to tell us that there were muffins the conference room left over from a meeting. Every time I passed the conference room the fresh blueberry muffins were calling out to me from the paper plate. I argued with myself throughout the day—it's just one little muffin. What could it hurt? But I know what it would hurt. It would ramp up the inflammation in my body, eventually leading to aches and pains in all my joints. All that from a plate of muffins, which most people wouldn't even think twice about.
I try not to live in the past. It's not a good use of my time and energy to wonder what could have been…What would've happened had I never gotten sick? What if there had been better information about prevention at that time and I had gone to the doctor after those tick bites? What if my body was able to fight off the bacteria?
But there are days. Days when I miss staying out late at night. Days when I miss eating anything I want. Days when I miss not taking handfuls of pills and supplements with every meal. Days when I miss feeling full of energy.
When you are diagnosed with a chronic illness your future becomes full of unknowns. Chronic illness is a lifetime companion. Even if remission occurs, there is always the fear that it could come back, so I doubt I’ll ever entirely return to my old ways of going to all day festivals or binge-watching TV shows until three in the morning. This new life is here to stay, and sometimes I really miss the old one
Summer is especially difficult. Some of my fondest memories are of being on a roof deck restaurant in Chicago. My friends and I would go there on warm days and drink cold beer and eat giant soft pretzels cooked on the grill. Because of antibiotics my skin is now sensitive to the sun, so roof deck restaurants are no longer an option. I probably wouldn't enjoy it anyway, because the diet I follow doesn’t allow alcohol or gluten.
I don't spend as much time outside during the summer anymore, because I'm afraid of reinfection. I miss walking on nature trails without fear and not worrying when my dog runs behind our garage into the brush. I used to see the beauty in a field of tall grass, now I just see the potential for ticks.
What do I do when I miss my life before Lyme? I allow myself to be disappointed for awhile. It's okay to be sad that things are different now.
After the disappointment, I shift my perspective and give myself some gentle reminders. I have a chronic illness, not a terminal one. My illness is not rare, and there is a community millions strong I can lean on for support. My illness may not be curable—yet—but it is treatable.
It's only then that I'm able to think about the ways I'm grateful for Lyme. Lyme has offered me the chance for personal reinvention. Instead of just being the person who can’t do things she used to, I’ve decided to become the person who explores the new things I am able to do. I've taken up meditation and gentle yoga. When I make travel plans, I look for places with plenty of opportunities for rest and relaxation. I've shifted my finances away from nights on the town and toward massage therapy and organic food. My focus has shifted from outward to inward and I’m okay with that. I like the new, low-key version of me.
Lyme has also taught me not to take anything for granted. I may not be able to eat a muffin or sip beer on a roof deck, but there is still a world of things that are available to me, like the occasional gluten-free cupcake or going to an organic farm-to-table restaurant with big open windows that let in a cool breeze in from outside.
There will always be reminders of what it was like before Lyme and sometimes I will feel nostalgic and even sad. It’s taken some time, but I've learned to love my life with this diagnosis.
"Stress occurs when you care about something...think about how to use what stress tells you to create a life more vital than the one you had before." - Alia Crum
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.