Living With Lyme: Staying In My Body, and Advice from a Petite Pilates Princess

A resting place when not feeling ill during a training walk last week.

A resting place when feeling ill during a training walk last week.

Something’s off.

Even after 20 years of living with chronic Lyme disease, I can tell that something’s not right. Symptoms are not lessening like they should have, after I drastically reduced my work load  by leaving my private chef position in February and adopting a much gentler lifestyle. And new ones have returned from dormancy, which Muffin reminds me existed years ago and were signals that I was entering another period of active Lyme that needed serious treatment.

I’m not jumping to the conclusion that I’m on that path now.

But something’s offAnd because of that, my defenses are down.

Last week was particularly rough, and I got to a point where I felt very vulnerable, and scared, and anxious. It was a physical feeling, and for days I was in a cloud, and shaky, and extremely low. And so I kept breathing, kept working through the brain fogs and shakes, and tried some shadier methods to get everything back on track, to no avail.

So I sat to meditate – my unquestionable source of calm amongst any storm.

And as I sat, breathing slowly, calming my mind, things got worse. Instead of feeling more in control, I felt extremely more exposed. Things I had never worried about before flooded my chest. I was petrified. I talked (out loud) through that fear: “I’m going to stop doing this now, and turn on the lights, and read in bed until I fall asleep, okay, whatever’s out there?” And that’s what I did. It was very creepy. I wouldn’t have been the bit surprised if all my electronics turned on automatically and Mitra’s head spun in a 360.

So, what do you do when you can’t separate your mind from the sensations of your body?

As timing would so beautifully have it, I got a comment recently on last week’s Walking Meditation post, about just that:

“I’ve had 14 years of CFS/pyroluria and when my adrenal function dips below a certain level I find it really hard to do those things I need to – walking on grass barefoot and playing with clay and drawing, meditation and yoga. It’s like the fight or flight takes over and I fall into a fear filled wasteland where there’s not enough time to do those things because a) I can’t reach them anyway and b) who can be wasting their time with such things when I feel so insecure and the financial roof’s about to cave in? I have begun hauling myself out of such a space again; I’m not sure if you experience this place in your own journey or not.”*

Bingo. Jackpot. Yahtzee. Pass Go and collect 200 dollars.

So, here’s what I’m working with, and I would love your thoughts as well:

I’m going to stay in my body for a while. Instead of trying to escape it, I’m going to be really present in it, pain and fear and vulnerability and all. Muffin pointed out that when we’re physically vulnerable and exposed, sometimes our minds are the only things keeping it all together. And where meditation can help you separate from that, and largely has helped me feel in control over the years, maybe now’s a time to let my body get more of the attention.

So instead of denying that something’s off and barreling through, I’m going to coddle my body with extra sleep, and lots of warm tea, and maybe even some time gazing lazily out the window at the rain with Mitra. I’m going to let my body win, and stay inside of it. Not forever. I still want to accomplish things. And contribute. And move my body. And love others. But just for now.

And I have a petite Pilates princess for help.

piper_final“Once upon a time, not very long ago, in a land not far away, there lived a little girl named Piper.”

Welcome to the adventures of Piper The Petite Pilates Princess, the stories of a petite little girl who finds her strength and confidence when her Aunt Kate begins teaching her Pilates. Once Piper finds her own strength and confidence, she continues to discover all kinds of things through Pilates – courage, observation skills, the ability to stand up for herself, how to trust her own instincts, and so much more. As her adventures continue, she’ll learn about the size of her heart and all about beauty.When creating Piper, author Marcia Polas realized hers was one part bedtime story and two parts fairy tale. Initially, Piper was meant to be a storybook, but as she evolved, Marcia became certain that Piper’s adventures should be heard.

I met Marcia Polas via Twitter. And sometime after we’d met in person and become dear friends via breakfast meetings and FaceTime and hour-long commute phone calls, she sent me the first two audio stories of her Piper series. And, standing at the counter one day at my cooking job slicing carrots – exhausted and sore and aching and scared – I listened to Piper’s story. And I smiled. And stood straighter. And felt stronger. Meet Piper personally here.

Marcia works with chefs, actors and dancers alongside her other students, teaching them how to match their alignment and movement with the very physical things their bodies require of them. What she has taught me, through Piper and those phone calls, is to really, truly, slow down. That pushing myself now to accomplish what I want – be it to lose these extra ten pounds, or land that next writing gig, or find that next special man – is only progressively harming my chances of achieving any of those in the near future. That my body has to come first in small, and sometimes fun explorations.

There is joy in the tiny relationships we build when we know our bodies as intimately as those of us with chronic illnesses do. Evidently again, at 31, my body needs to teach me something. And while I sit at my desk with a burning spine, aching neck, shaking fingers and blurry eyes… I’m ready to be taught. I look out the window past Mitra at the rain. And things are green, and pink and white, and dark red… Spring lush with renewal and hope.

For right now I’m staying in my body. What’s going on in yours?

Joyful rainy Wednesday from Connecticut,

– Jacqueline

Here are some things I’ve been reading this week…


  1. Joy says:

    I can relate to all of this, having chronic lyme. Honor your body by slowing down, give it nourishing food and lots of love. Meditation can be challenging and we have to work at it. It doesn’t have to separate you from your body. Being very present is a meditation, like walking meditation. Don’t give up! Our minds run with the story when our own fears set in. Positive affirmations work for me. I love Louise Hays book, YOU CAN HEAL YOUR LIFE. I also love Thich Nhat Hahn’s books about being present.
    Feel better soon.

  2. Pingback: Ramp and Maitake Mushroom Tartelettes (gluten free) | The Dusty Baker

  3. Hope you feel better soon, too! Sounds like listening and being in your body will help, not to mention cutting down on long work hours. Take care! Love the Pilates girl story, really so sweet.

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