I don’t need one more thing on my plate. So when I told my husband that I was starting this blog, he gave me that look. “And why are you adding this right now?”
“My physical therapist made me do it.” She’s always making me do things that I should do but don’t want to. That’s her job, right? I don’t think he bought it.
The truth is, she has been nudging me for a while to document all of the things that I have learned and done over the past two years as I stumble (sometimes literally) through life as a newly diagnosed person with Ehlers-Danlos Syndrome and the mother of two children who also have it (yup.) I am an aspiring writer, and as many of you living with chronic issues know, there is never enough time to meet the goals that we have set for ourselves because of the many setbacks caused by injury, pain, or the demand for extra rest. But this blog idea has scratched its way into my brain, and I can’t get it out now.
I had my reservations for many reasons. I am normally rather private about my health, choosing carefully the moments and the audience for any reveal. Throughout my life, I have functioned on a high level by focusing on positive things and not dwelling on my pain or problems. I don’t want people to associate my name with illness or disability, or to see me as the “one- legged marathon runner.” And yet, living on that island with few visitors did not do me a lot of good when I found myself in a three year stretch of cervical instability and daily, debilitating headaches, and needed to rely on the proverbial village to help me with my kids. I am learning that it is OK to let people know – that it is not the same thing as whining.
Here is what my blog will be: An often humorous, and hopefully informative diary based on my family’s case study. Learning that you are hyperflexible, and that it has caused your body to be very weak, is a weird concept. I am two years in, and I still don’t always get it. My eldest is 11, and she is as sharp as a tack. We often make jokes about how we are flexible, so we have to be flexible (plans are what you make, Life is what happens…) Another one that we came up with is, if we were a business, this would be our cheesy tv commercial:
Our flexibility is our strength!
Hey, it cracked us up, and I love that my kid is already this ironic. She’s going to need it.
Here is what my blog will not be: I am not a doctor or a physical therapist: I cannot tell you if you have EDS. If you identify with the symptoms that I describe, please go seek the advice of a medical professional who is familiar with hypermobility. A good place to start is the EDNF website.
OK, people. Let’s do this.
(first published on Blogger on 3/28/14 7:26 AM Pacific Daylight Time)