A Day in the Ring With Fibromyalgia
It’s often difficult for those of us who live with chronic illness, both mental and physical, to explain to someone how complex sleep can be. Sometimes, getting two hours of restorative sleep does me better than getting eight hours of restless sleep, but people will see two versus eight merely as a matter of numerical order and send sympathies on the nights of shorter rest. Sometimes, sleep is merely an escape, a chance to surrender to what we’re dealing with, and give ourselves a much-needed break from consciously battling our own minds and bodies.
My own approach when attempting to explain my day-to-day struggles with fibromyalgia, depression, hypothyroidism, rheumatoid arthritis – the list goes on and on – is to come up with stories. I’ve always loved creative writing; I even went to college to receive my Bachelor’s degree in English. The only pastime I’ve ever loved more than writing is working with children – from babysitting, to nannying, to teaching play classes, and most recently working as a daycare lead teacher. So, when it comes to explaining my illness, most of it is to my little ones who may wonder why I can’t chase them around the yard without getting tired, why I may want to build a fort and watch movies over playing a second hour of Twister.
Believe it or not, these stories I’ve created to explain to children the struggles of having a pain condition come in handy with adults, too. We have become a vastly visual society, understanding what we see versus what we hear, what we can clearly visualize versus what we can merely imagine. So, this morning, when I awoke and shared my 12 hours of sleep with a select few friends, and all but one replied with “Man, you’re so lucky!,” I came up with the following story…
Imagine spending your day in the boxing ring with your disease. For the sake of this story, we’ll narrow it down to your largest opponent. For me, on a rainy day, it’s my fibromyalgia. So. You’re in the ring with Big Bad Fibro, throwing punches, ducking blows. You get yourself out of bed, showered, dressed and into the office – ding ding! Round 1: You.
You finally sit at your desk and suddenly feel swarmed with dizziness, nausea and fatigue like you haven’t experienced since last week’s rain – ding ding! Round 2: Fibro.
You manage to push through the flare-up to get done the weekly work required of you on a Monday morning. You’re feeling proud and accomplished. You decide to eat your lunch at your desk because you’re too tired to go out or sit elsewhere, but hey, you’re getting through this! One smack, two smack… You think you’ve got the third round in the bag when ding ding! Round 3 goes to Fibro for the sudden muscle spasms, causing you to drop your lunch and hot tea on the kitchen floor when moving it from the microwave to the table.
Punches are flying left and right, the crowd’s on the edge of their seats as you nearly escape each fatal blow, from 9:00 a.m. through lunch hour, into the early afternoon, when finally, the clock hits 4:15 and you surrender. “I know my day ends at 5:00, but I’m calling it, I need to go home.”
But the fight’s not over yet. You get yourself home, stumble to make yourself a basic PB&J, dropping utensils, making a mess, and when you finally get the food in your stomach, you retreat to your bedroom. Heating pads in place, pain cream applied and you’re ready to unwind. You take out the book you’ve been trying to read for weeks – you can see the light at the end of an awful fight. One smack, two smack – and you’re hit with the final blow.
Your vision’s blurry on the left, completely gone on the right, the pain reeling as it creeps along the top of your scalp, every strand of hair suddenly ablaze. “Enough!” you scream as you wave your white flag. Ding ding – and the match is won. You grab the pain suppressor/sleep aid, and you finally surrender to your opponent. The last bell rings like nails on a chalkboard in your ears and you can feel yourself slam to your bed. Here it is: KO.
You awake 12 hours later, head spinning, eyes heavy, body aching from the blows. You lift yourself from bed, reach for your phone, respond to the ones who have reached out in concern, apologizing for not responding as you’ve been knocked out for the last 12 hours…
…“Man, you’re so lucky”…
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Thinkstock photo via Gutzemberg.