The Price I Pay


I am a control freak. A complete and utter control freak. I always have been. What is the worst thing for a control freak? Having a chronic disease like cervical dystonia. Those two go together like toothpaste chased with a glass of orange juice! I am so frustrated with the amount of control I have lost because of this disease. However, giving up control and listening to my body,  has made the dystonia SO much better.

For spring break, we took the girls to Great Wolf Lodge in Mason Ohio and had such a wonderful time! Three days full of absolute bliss. Luckily for me, when Neil booked, a handicapped room was what was available. This ended up being beneficial for me. A wider area made it much easier for me to maneuver around. Our room was far away from the water park, which was fine, just a longer walk.  The exercise is always good for me.

The waterpark was such fun. I stayed with our youngest most of the time while my husband and our oldest went on slides. We floated in the wave pool and lounged in the lazy river for hours. The water park was a little colder than my body would have liked, but that was ok too, and not unexpected. I listened to my body and took breaks in the family hot tub and wrapped myself in the warm towels when it was too cold for me. It was a disappointing when I had to stop playing with the girls and warm up, but it didn’t take away from my joy. I  listened to my body and only did a few slides, paid attention to my neck pain, and limited my riding so I wouldn’t become dizzy. Still, all fine with me. I was perfectly happy floating in the wave pool.

We went to the water park when it opened in the mornings. We stayed until we got hungry and then went back to our room to eat lunch. In the afternoons, we took a break from swimming doing other fun things like the arcade, mini-golf, and bowling. After an early dinner, we went back to the park and swam again until around 9 each night.

I loved our little vacation. It really was perfect. As we left for home, the weather was looking good and I told the girls that I would take them to the zoo the next day. We have not been to the zoo since last October. But something unexpected happened the next morning: I was exhausted. Exhausted as in felt like I’d been hit by a train. I was drained, and I was weakened. I felt disabled. I had to tell my girls I couldn’t take them. This was a first for me and it broke my heart. I pride myself in beating my dystonia every day and keeping control of my life. And I am always in control, right?


This was a new experience for me. I am used to being tired all day every day. But, I have never been exhausted to the point where I had to stop my life for not just a day, not two days, but three days. Crap.

My life with dystonia has become a series of new norms. This could have been a fluke or this could be another new norm for me. Perhaps coming back from vacations will now result in me spending 3 days on the couch. Or maybe it won’t. Now while I realize that being stuck on the couch is not at all a horrible thing in the course of a lifetime, it is still so frustrating!  And as much as I want to be in control, this spring break was a fresh reminder that I’m not.

Current score: Cervical dystonia– 5,126    Me– 1,342  

But my number will keep rising, because I’ll always keep fighting.



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