The past couple weeks I’ve been teetering on the tightrope of fibromyalgia. Each step, each day brings a moment of uncertainty – is today the day I lose my balance and fall off? Or will I be able to firmly plant my foot and continue inching forward over the threatening abyss below?
It’s a metaphor I’ve used a lot when describing my daily life to friends, family and acquaintances who have no experience with the precariousness of day-to-day living under the storm clouds of a chronic medical condition. I am blessed with a husband who intimately understands – he battles with Type I diabetes – but the feelings of isolation while walking that tightrope can be debilitating. Not just physical limitations, but the aloneness of managing life with an “invisible” condition.
Look at me – what do you see? A tall, athletic woman. Standing straight, walking a normal, even fast, pace. Cooking dinners, laboring in my garden, heading off to work, and traveling the world. So I must be perfectly fine, right? Healthy. Cured. A typical 20-something woman who should be able to keep the house clean and presentable, the yard immaculate, and engage in energetic social activities with friends and colleagues. I manage working part-time, so I must be able to arrive at home ready to whip up a healthy meal and keep up with an exercise routine, all while devoting time to my husband and staying in touch with faraway friends. And by the way, when am I going to return to full-time teaching or start having kids? I mean, I look fine, right?
But here’s the catch – as I walk this tightrope, straining my muscles and curling my feet for a grip on the wavering rope, I have to channel all of my energy and focus into maintaining my balance. I may successfully walk the entire tightrope for one whole day through my job, gardening, chores, and social engagements, only to wake up the next morning to discover I went one step too far yesterday and now my muscles are so weak, I cannot stay on the rope. One bounce, one little hiccup to my day, and I’m falling without a safety net.
This life is exhausting.
I’ve mentioned before that the secret to successfully walking my tightrope day after day is managing a routine that incorporates healthy eating, enough sleep, a joint-friendly exercise routine, physical therapy, and massive amounts of stress management. But I keep falling off. This isn’t easy. I’m not cured and I never will be. No matter how disciplined I may be, the smallest stressors can knock me off again into a cycle of pain and fatigue that’s difficult to climb out of. There is no end to this tightrope.
And that’s an extremely isolating and frustrating life journey.
I don’t have all the answers, only hope and a grit to carve out some quality of life for myself within all the challenges of fibro. That’s part of why I have made traveling the world such a priority, despite the obstacles presented by my condition. It’s also why I’ve begun to bow out of the rat race that is the American way of life. Enough of trying to work as much as possible to earn as much as possible to buy stuff and achieve some sort of golden social status. Those values will only keep me falling off my tightrope in despair time after time.
I only have so much energy to devote to living my life – so how do I want to spend it?
I haven’t fully answered this for myself yet, but I’m working on it. And when I’m focusing on practicing my German, exploring the world, reading a good book, gardening fresh veggies, playing Scrabble with my husband, or visiting my nieces and nephews – I can honestly say I’m content. Despite the pain. And that’s a start.