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How I Explain Fibromyalgia to People Who Don't Get Why I'm Tired All the Time

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Christmas lights in July… I can hear you thinking, What is she talking about? It’s not even Halloween yet and she is already thinking of Christmas. Well I am not thinking of Christmas, but the aches and pains that make me feel like someone has turned on the twinkly lights in my body. I have always used the Christmas light analogy to describe the fibromyalgia pain to my friends and family. They have a good visual of how the pain travels when I am in constant pain, especially during a flare-up.

Those of you who know me and/or have been following my blog know my struggle with fibromyalgia and fibromyalgia meds and how I have been trying to manage fibromyalgia without any prescription drugs since Feb 2015. But that comes with its own set of challenges, meaning there are no in-betweens — it’s 100 percent pain, 100 percent of the time.

For the most part, I manage to go about my day in a somewhat normal way (as normal as it is for me) despite high levels of pain and fibro fog. If you have just met me, you would never know I am in pain. I do such a good job of faking how I feel that I sometimes feel like I walk around with a mask. But when you add in the fatigue, it is a completely different and debilitating story and it is difficult to explain (even to myself) how I can feel tired all the time, even if I was in bed all day. At least with the Christmas lights, you can imagine pain traveling all over your body, but how do you explain the constant fatigue — especially after a day of complete and total rest? And this is where the “Carbon Bathtub” analogy comes in.

What in the world is Carbon Bathtub, you ask?

This spring, I took an class called Climate Change, Global Governance and Justice at the Heller School for Social Policy and Management at Brandeis University, where the concept of a “Carbon Bathtub” was introduced by Professor Miheala Papa to explain the constant increase in CO2 emissions. The concept is used to illustrate that we are putting CO2 into the atmosphere faster than it can drain out of planet Earth.

So applying the carbon bathtub analogy to fibromyalgia:

Faucet = Sources of more pain and fatigue such as weather, stress, flare-up… anything.

Drain = My pain management strategies without the aid of any fibromyalgia meds — walking, music, strengthening exercise, family time and other new things.

And here is my “Fatigue Bathtub” theory: The speed at which my body accumulates pain and fatigue (as a faucet) is way faster than it is able to drain the pain and fatigue with the aid of the strategies I use. In short, my body is a better faucet than it is a drain.

You may wonder what I achieve by developing analogies. Believe me, after 10 years or so of explaining (or trying to at least), it definitely helps to provide a visual and yet another approach of explaining this annoying, literally pain-in-everywhere condition/disease/illness to yourself and others, because:

“One good analogy is worth three hours’ discussion.” — Dudley Field Malone

A version of this post first appeared on LGV Blogs.

Originally published: July 13, 2016
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