I feel like a hypocrite…
Lately, I’ve been sleeping on the couch instead of in my bed next to my husband.
There was no torrid affair with a movie star or falling out. Instead, this is all thanks to the plethora of illnesses that I’ve collected over the years. The biggest culprit as of late has changed from my mostly-controlled Systemic Juvenile Idiopathic Arthritis (SJIA) to my Fibromyalgia. With that comes allodynia, or that thing of when sensations that shouldn’t hurt you do hurt – like clothing touching your skin. Our couch is super soft and feels like a fleece blanket so, when my Fibro flares up, that’s where I live.
That doesn’t mean I slow down by any means. I do a million things from that couch: work on my masters, plan advocacy events, raise awareness of illnesses or money for new treatments, mentor others, write, run two websites, host a weekly chat, Skype or game with my sister, be a badass friend, play with my guinea pigs, pass out and snore, and more! I do sleep – promise.
I’m not superwoman. I know this. I have dealt with such bad fatigue that, when I have the energy to accomplish these things, I have to act. Call it making up for lost time, being stubborn, hogging opportunities – I call it helping others. That’s what I love to do.
Participating in such a wide variety of things contributes to stress and, in turn, pain at times. It takes away from things I might be able to do with family or for self-care. The topics I write about – relationships, self-love, sexuality, dealing with comorbid conditions, managing healthcare, recovering from childhood abuse, and more – resonate with others. They are topics that aren’t covered well by other patients, physicians, healthcare professionals, organizations, and more.
I do all of this because I know that I could have used someone like me as I grew up, as I learned more about my illnesses, to show that you can still be sassy, realistic, have a crummy backstory, and STILL live an awesome life despite rocking a replica House, MD cane sometimes.