I want your honest opinion about truth and lies in blogging.
I’ve been writing an alphabetic, upbeat, happy, yes-you-can series about living well, despite everything, but perhaps I’m unintentionally misrepresenting something.
If, on this blog, I never write about my fibromyalgia, am I a liar?
As a fellow fibro-blogger, Cait Gordon, accurately describes: It’s very difficult to explain Fibro to people … [especially] when people in the medical field dismiss it as a behavioral problem. My answer to them is, ‘I’ll transfer my flare-up to you. It’s going to feel like people have inserted hot curling irons all over your body. Now, go and fix it with your behavior.’ ”
There are two things that have caused me to not talk about having fibromyalgia:
- that hang-dog sad look I get from people (please don’t pity me);
- unsolicited advice (please don’t give me any).
But to never talk about fibromyalgia on my blog is dishonest; because having it makes my life really, really, really hard.
In my weird Fibro world, pain is the daily normal. This makes energy a rationed resource. Every physical or mental effort costs me (this is explained by Christine Miserandino’s Spoon Theory):
- It’s as if every day I’m given 12 energy-coupons to spend on doing stuff.
- When the coupons are gone, I can’t stand up and I can’t think my way to the end of a sentence.
- If I try to do anything after my daily ration is used, I get punished. I get tortured by a demented demon who sizzles me with a zillion hot irons.
- The only way I can make the demon go away is to go to bed, pray, do relaxation exercises, and fall asleep.
Do you have any idea how hard it is to do relaxation exercises and fall asleep when you’re being tortured?
I have frequent nightmares. Buffalo trample me. Lions and Dobermans chew me up. And I always wake up in pain. Always.
- Mustering the willpower to overcome the pain to get out of bed costs.
- Bathing and dressing–ka-ching.
- Doing the laundry so I have something to wear costs. Shopping for new clothes costs more.
- Shopping for toothpaste so I can brush my teeth costs.
If my husband doesn’t do the laundry, make my tea, fix my breakfast, and do the dishes, I spend a quarter of my daily allotment before my day even begins.
- Talking to someone; writing; reading; going somewhere… ka-ching, ka-ching.
- Eating a meal costs. Eating refined sugar, refined white flour or food additives–costs extra. Skipping a meal costs triple. Eating in a restaurant is over-the-top (noise, sitting in one place, trying to find something healthy to order–all stressful).
- Stress–getting upset, angry, exhausted or scared–costs more than you’d ever guess.
If I lie down in the afternoon for an hour, I get a few bonus coupons.
- If I don’t stop whatever I’m doing every half hour to stretch and move around, penalty! I forfeit a coupon.
If I don’t exercise every day, I pay 6 penalty coupons. The kicker is, it costs me a coupon to exercise!, and I get at least an hour of the hot curling iron treatment after.
Do you have any idea how hard it is to take an aerobic walk when you know you’re going to get tortured with hot irons after?
But I exercise every day because it gets me at least 4 bonus coupons to spend on cool things like going out for clam chowder with my girlfriend, or going for a boat road in Newport harbor. There’s a strict limit to the number of bonuses I can earn, however; too much exercise costs 4 penalty coupons. And the rule-maker keeps changing his mind about how much is too much.
I’m guessing Kafka dreamed up this game.
- Going to an event–a family reunion, a concert, wedding, a funeral–costs 24 coupons. I have to save up, or borrow from the future, and then I’m put on even stricter rations until I pay back what I borrowed.
- Riding in a car costs. Driving costs double.
- Every little detail needs to be thought about. And thinking about it costs.
Living well, despite everything is hard. I didn’t mean to make it sound easy.
It takes discipline and persistent effort to face adversity in life.
But even when life throws adversity in my face, I’m convinced life is still an amazingly beautiful, astonishingly blessed gift, worth celebrating.
I’d like to hear from you, dear readers, bloggers, social-media mavens–
When writing about our difficulties (in order to encourage and inspire each other), how do we tell the truth without sounding like a whiny, buffalo-sized pain in the patootie?