The word Banphrionsa is Irish for princess, and it’s in my Twitter handle @BanphrionsaCait. But I always tell people that it’s not a spoiled brat persona, but more of a warrior princess sort of thing.
When I look back upon my life, I see that I have fought many battles. Bruce, my husband, calls me “tough chick,” which is true. I have the battle scars to prove it.
These days my ongoing war is with a spoiled diva called Fibromyalgia. I have had many health issues since I was a child and have managed to pound them all into submission. But Fibro is like a Sith Lord of the Dark Side of the Force. Except maybe more hissy-fitty and unpredictable. For those of you who don’t know, Fibromyalgia is a complex disability that causes widespread muscular-skeletal pain and debilitating fatigue, which lead to a whole other range of symptoms.
Lately much of my fatigue is caused by dolts who think the disease is all in my head and can change by modifying my behavior. To them I say:
If only I can transfer the bilateral pain in my neck, arms, hips, knees, and ankles, not to mention the chest pain from inflammation in my rib cage and sternum, along with feeling like I haven’t slept for the last 14 years. I’d give you all that mess, that pain and fatigue that goes up to 11, making you feel like you’ve lost your mind, and then I would say to you, “Go ahead, change it with your behavior.”
I try to do a lot to cope with this disability. I eat a gluten-free diet, because I was diagnosed with an intolerance and suspected Coeliac disease. Exercise is tough. I used to be a runner and now I walk with a cane. However, humor is a great pain reliever and I have now put Dr. House-like flames on the end of my cane. It does make me look like I’m walking faster! Working part-time is really hard, but it gets my mind into a different head-space. I couldn’t do nothing, or else I’d only be concentrating on how terrible I feel. And a great stress-relief and muscle builder is playing drums. I have a Hart Dynamics mesh kit that is my own personal physiotherapist. I named it Roxy Hart.
Recently I was interviewed by Julie Ryan, the author of Counting My Spoons, a blog about Fibro sufferers. I was one of her Wednesday Warriors in May 2014. You can read the interview here. I’m glad for people like Julie, and the admins on the Fibro Warriors 1 Facebook group. We need to stick together and remind each other that it’s the doubters who are wrong, not us. The more of us that speak up about the disease, the better. We all can’t be having a hyper-hallucination. Heck, this isn’t Woodstock ’69! 😉
And if you follow me on Twitter and feel that I’m talking about Fibro a bit to much, well, this meme I wrote sums it up well: