It’s been awhile since I’ve journaled here about C.D. I’ve been busy with a therapy program that is pretty time consuming, and it’s going to be a long, slow process. I’ve been trying to develop a routine that works for me that I can maintain long-term. There’s no cure for Cervical Dystonia (a.k.a. Spasmodic Torticollis), but apparently there is hope for managing the symptoms. If you’re interested in knowing more about recovery, check this out.
It has been a year now since my diagnosis and I am still trying to figure this out. The disease has gotten progressively worse and I now hold my head almost constantly. I let go for a few seconds here and there when I absolutely need both hands to open a jar, for instance, or butter a piece of toast – things like that. When I do that, however, I have to be willing to let my head go where it wills. That is always to the left, either quickly or slowly, but go it will. I’m learning to do things by feel because sometimes I can’t see what I’m doing due to the fact that I can’t make my head stay straight. I make a MESS in the kitchen these days and now leave the knife work to someone else.
That’s just a small sampling of my new reality. Social anxiety is now a thing. I’ve gotten to the point where I don’t like going anywhere without backup – someone who understands my situation and will provide emotional and practical support. I hate that! It’s not someone going with me that bothers me as much as the fact that I feel I NEED someone to go with me. A lot of times, I’d rather not go at all. I use Amazon and grocery delivery more than I ever have. A big part of that is also the fact that driving is a bit of a challenge now as well. Thankfully, I have an ’03 Tahoe that allows me good visibility and the headrest fits me well. Long highway trips are not as bad as in town where constant head movements are required. I wear a brace when I drive and that helps. Still, it’s not as easy as it used to be.
This disease makes it so easy to give up because it’s a constant physical and emotional battle. Fighting your own body all day is exhausting and disheartening. My arms get tired from trying to hold my head in place while my neck muscles are contorting and contracting, and they do it almost constantly. I take a break every day and lay with my head in a U-shaped pillow, practice breathing exercises and nap for about 30-minutes. The symptoms go dormant when I sleep and the pillow helps hold my head as I attempt to relax. I have NEVER been a napper. I’ve always had too many other things to do and was rarely even tired enough. But, I am now! 😴
I’m not sharing these things to complain as much as to chronicle my journey and what I’m dealing with or learning currently. Right now, I’m still learning to adjust. I’m learning to trust that God allowing this in my life doesn’t mean that He doesn’t love me and still have good plans for me. He does and He will work this all for good. I’m also still learning what it is that I’m supposed to be learning, aside from what I’ve already mentioned. I have a feeling that there are going to be many lessons in this.
One of the more important things I’ve learned for myself is that I don’t want to give in to this disease’s temptation to give up. I need to accept that functioning differently is not giving up. Letting someone else chop the veggies while I do something I can do with one hand is not giving up, it’s functioning differently and practicing kitchen safety. 😉😂 Asking for help of any kind is not giving up. Granted, it’s hard to do sometimes, but it’s still not giving up. C.D. Is just one huge adjustment of almost every aspect of my life . . . and that’s life. As the ancient philosopher, Heraclitus, once said, “The only constant in life is change.” I’m doing my best to adapt to this particular season of change and I think that’s all any of us can do – our best. 🤕