Lets talk about my bro, no not my bestie or an actual brother, my fibro. For those who don’t know, “fibro” is short for fibromyalgia a condition currently characterized by a hyper-sensitive and over active nervous system. It usually manifests as widespread chronic pain but has a myriad of other related and lesser known symptoms. In any case fibro makes life thrilling, never a dull moment for sure. But just like any brother, or family member for that matter, fibro is a bit pesky, temperamental, and sometimes just plain rude. It doesn’t care about your plans, hopes or dreams it just wants your attention and wants it NOW, if you know what I mean.
My journey with fibro happened long before I actually had a diagnosis. Doctors…I’ve seen 8…aren’t quick to diagnose it. Its true that its a tough condition to diagnose but more importantly its not well understood so many doctors don’t think of it quickly. Unfortunately these two factors mean that people go undiagnosed and untreated for YEARS. While many are able to remain functional, like myself, people with fibro often times struggle to reconcile why living what seems to be an “average” life is so difficult. More importantly we struggle to reconcile that to the outside world we look completely normal while on the inside some wires got a bit crossed.
Now I’ve heard people use the spoon analogy to describe what its like to have lupus and I’ve heard it applied to fibromyalgia, but having fibromyalgia is more than not having enough spoons. Its not having enough spoons while also using them faster than average. So I like to use this analogy more…
Think of your energy as if it was a river. Your body has built a dam on that river creating a pool of energy to draw from as needed. You have a solid dam with one outlet to draw energy out of. You can regulate how much you open or close this dam. For example, lets say you want to go for a walk, you simply open up your dam a bit more and use the energy to propel yourself forward. Or maybe you have a big project deadline at work, so you hunker down and put in some extra time, drawing on your reserves to pull you through.
Now lets say your someone with fibromyalgia. You too have a river of energy and a dam that helps regulate its use. Except unlike the average person your dam isn’t so solid. Its got lots of micro fractures and leaks created by fibromyalgia and its related conditions. Insomnia…that's a crack…Chronic pain, that's another crack…inadequate digestion.. another crack…chronic headaches…another crack…you’re probably getting the picture.
For someone with fibromyalgia regulating their energy is difficult because so much of it is lost from all of these cracks. We have to make choices about what we can accomplish in a day. We have to make choices a healthy human being doesn’t have to…like can we go to that movie after work and still accomplish the tasks we need to the next day. Or should I drink that glass of wine at dinner with friends and suffer the potential for catastrophic digestive upset…i’ll spare you the details. Someone with fibro makes all these micro decisions continuously throughout the day all while appearing relatively normal, I might add.
So the next time someone says I have fibro, you’ll know a bit more about it and can ask, hows your fbro today.
remember…life…is about the journey
Hi, I'm Liz. I like to write about life and the wisdom I cull from it. I use words and images to inspire empathy and connection with each other and the world.