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
Its been a while since I posted. Life got a bit ahead of me in the past six weeks and I just barely kept up. In that time I came to realize how important and powerful honesty can be. It was one of those humbling life moments that reminds you, you can’t know it all, that in fact sometimes it is better that you live in the curiosity of questions you don’t yet fully know the answers to. Learning to appreciate the journey, understanding that those questions will find answers that will only lead to more questions and discoveries.
In the past six weeks my outlook has changed, my goals have shifted. I've had to take a hard look at my life and ask myself what I truly want. What I found, was that what I want has remained very constant. I want to help people. I want to help people so that this world can be full of more courageous empathetic forward thinkers.
Now I don't expect to accomplish this in any grandiose way. Rather, I hope that by sharing my journey through this blog that others will find inspiration and courage to follow their own paths and be the change they want to see in the world. Perhaps in this way I will leave this world a better place then when I came into it.
There is nothing about my journey that I believe is exceptional but there is plenty of wisdom I think I can cull from it. It may be your basic everyday sort of wisdom for some but for others it might be full of epiphanies. In any case this is just a long-winded way of saying I'm going to start writing more. But more specifically I'm going to start writing more about the fact that I've been diagnosed with a chronic incurable condition. A condition that has shaped my life for several years now and will continue to shape it into the future. A condition known as Fibromyalgia.
I hope that by sharing my journey that I am able to provide a voice to those who are like me but more importantly a voice that reminds us all of the humor, the tragedy, the hope, the opportunity, and the beauty that life can provide us. It is true that life is short, that it throws us curve balls we never saw coming. In the end it is up to us to find a way to catch those curve balls and make the most of what we have been taught by life.
…Its 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.