Why Fibronaut? Because Fibromyalgic, much like Fibromyalgia, sounds made up. So why not go by a name I made up myself that has meaning to me. A Fibromyalgic is someone suffering from a painful condition whereas a Fibronaut is someone navigating an illness that is so much more than pain. Pick up any book on Fibromyalgia and you will find a very extensive list of symptoms that includes not just pain, but fatigue, depression, difficulty concentrating, and irritable bowel syndrome, just to name a few. Doctors are still trying to understand the condition and how people go from normal healthy lives to having half the energy they used to have and ten times the pain experience of most people.
So how do I understand, live with and explain this disease/condition/syndrome (everyone seems to consider it to be something different) to the people I love? How do I explain to my children that Mommy loves them and would love to do all the things I used to do, but I just can’t? Even my husband Cameron (if you know him, you know he’s the most laid back, understanding, supportive and fun-loving person on the planet) sometimes forgets that on my good days I’m still not that great. This is why I’m not a sufferer, although I do suffer. I’m doing the best I can with what I have and trying to help others in the process.
Before I quit working, I had a customer sit down at my desk one day with a newspaper. He was well known for poking fun and putting people on the spot and that day was no different. He showed me the front page featuring a female astronaut and asked if that was me. I replied “I may be a space cadet, but I’m no astronaut”. I was pretty proud of myself for coming up with that on the fly and I definitely earned his respect with my witty response. This is an exchange that has stuck with me and has really been something I can identify with. Just because I’m not doing what I used to be doing and at the level I performed, doesn’t mean I’m useless.
If you’re reading this and you know someone with Fibromyalgia, I encourage you (if you have the time and inclination) to reach out to them. If they are anything like me, they will refuse help do to stubborn pride, but force your help on them and they will be happy for it eventually. I had some really awesome, generous friends, alumni of East Middle School and Hinkley High School in Aurora, CO chip in and buy me a MINT automatic floor cleaner. My parents help me with dishes and laundry and my entire family has learned that I am not who I used to be physically (I’ll visit the emotional side in another post) and that sometimes I need help.
Thank you for reading. I sincerely hope that people will follow my posts and that my doing this blog will help not only me, but others in similar situations.