It has been a week and a half now since I was officially diagnosed with Cervical Dystonia. The gambit of emotions that I have been feeling has my head spinning, metaphorically. I keep trying to remember exactly when I started having problems. It was so slight at first. I was having just enough trouble controlling my neck that I needed to make sure I was sitting in a certain place in church so I could still focus on the pastor. Then one day I looked down at something and my head just went left on its own, but only when I looked down. Eventually, it didn’t matter how I held my neck, it would turn on it’s own and sometimes in the most violent way. It felt like my head was trying to spin around, literally!
It’s been months since I first noticed the lack of control. My neck is injured from an accident and I thought the damage was just progressing. I’d never even heard of Dystonia. I had no idea what was really going on. That in itself has been very eye-opening for me. What other awful things are out there that I have no idea exist? According to some research my daughter did, Cervical Dystonia is rare among people my age and more common in older folks. Rare or common, I don’t think it really matters. It’s a thing!
Something that scares me is that I find myself more and more reluctant to go out in public alone. The grocery store is an anxiety attack waiting to happen. In the aisles isn’t so bad, as long as I don’t have to talk to anyone. Checking out is a nightmare, or at least it was. My hands were busy dealing with my wallet and the card machine, so I couldn’t hold my head. That left me trying to respond to the cashier with my chin in my shoulder, embarrassed and frustrated. I recently came up with a solution to that though. I pull my debit card out of my wallet before I get to the register and throw my wallet back in my purse. I deal with the card machine with one hand and hold my head with the other. When I’m done I just toss my card in my purse, the receipt in a bag, and sort it all out when I get back to the car. It may not be ideal, but it saved me some anxiety. This last time I needed groceries, I had them delivered. 😏
I’m hoping that won’t always be the case. I am not a recluse. I love to travel and meet new people. I enjoy going shopping. My daughter and I enjoy regular coffee dates and I swim with my grandkids once a week. Somehow, I have to learn to actually LIVE while dealing with this.
My neurologist has given me hope. She has seen people cured of C.D. and she has me on a regimen of treatment “exercises”. To be perfectly honest, I’m struggling with that a bit too. I am so thankful to have hope. Please don’t misunderstand. It’s just that my life right now is pretty much doing the exercises. If they work, it will be more than worth it. I guess maybe I’m having difficulty with how everything has changed. Spending my day doing these exercises, having to wear a collar if I want to actually accomplish anything.
I’ve been a stay-at-home mom for twenty-four years and not the kind that sits around and watches soap operas while she folds the laundry. I homeschooled my kids. I cooked from scratch, making my own bread and anything else I could. I gardened. I was busy. Now, my daughter has taken over the homeschooling of the one eleven-year old I still have at home. We’ve been relying on more prepared foods or the two or three things my husband can cook. It’s just all so different and I’m trying to adjust without falling into a pit of depression. And I’ve recently learned that there are a lot of other people in the same or a worse boat.
I don’t know what the future holds, whether I’ll be cured or whether I’ll be living with this for the rest of my life – however long or short THAT is. I’m just doing my best to keep my eyes on Jesus so the wind and the waves don’t pull me down. I am so thankful for my amazing and devoted husband who keeps me laughing and doles out as many hugs as I need. I am also thankful for other people like me who understand, and the supportive communities that I am discovering. I pray that we can all find a way to adapt and overcome, and still enjoy our lives!