Adjusting to My New Reality of Being 'Reliably Unreliable' With Fibromyalgia

Its’s 3:30 a.m. The pills in my system say I should’ve slept all night, my body is in complete disagreement. I would love to say this is unusual, but since being diagnosed with fibromyalgia and having it hit hard at 40, it’s more like the new normal. As are the repercussions from the sleep deprivation and all it does to my body.

I’ve always prided myself on being reliable – I am a Boy Scout after all. Daddy’s little girl, the Troop’s little sister, my children’s Leader and a Camp Director. My motto is if you’re not 15 minutes early, you’re late. Be prepared. Be trustworthy and honest to your word of what you so kindly do. No where in the Scout Oath and Law does it say be unreliable.

woman holding a snake to teach about wildlife

My staff is my extended family, and for them and the kids I teach I would do anything. Which is why the new normal makes me feel like a hypocrite. How do you set an example and teach servant leadership when your ability to lead and serve can be snatched away at a moment’s notice with an onset of pain or exhaustion?

black creek scout reservation summer camp staff 2017

I’ve decided that leaves me to be loyal and brave. Loyal to finding new ways to set an example and run the program we’ve built in the last three years. Brave to face those who don’t understand and speak poorly when the year one Linda isn’t who they see. It’s the new normal of being reliably unreliable; planning ahead so I don’t lose me and they don’t lose me either.

a drawing given to Linda with an acronym of positive adjectives corresponding to her name

It’s taken me almost a year to find this “ah ha” moment. I can’t say every time I have to step away the guilt doesn’t come glaring back or tears aren’t shed. But then my husband comes along, a text from one of my biological or staff adopted kids, a stuffed shark to hug. Then I realize being brave and doing my best is still me. Still the servant leader. I’m just adding a new lesson of perseverance along the way.

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