It’s been awhile since I shared anything about my journey with Cervical Dystonia, so I thought I’d pop in with a few words because today is one of those days that I think a lot of us experience, some more than others maybe. We talk a lot about the physical aspects of this disorder, with good reason, because they’re dramatic. Dystonia turns us into painful contortionists and the domino effect on connecting muscles is mind-blowing.
The mental game is no joke either though, and it is a head game. There’s the whole grieving process when we’re first diagnosed. Then, for me at least, my emotions ran the gamut from depression to determination. I was diagnosed a little over three years ago and it has been a roller coaster ride. Some days I’m at peace and coping with it, and other days I’m dealing with anxiety and depression. A lot of days I’m angry and frustrated very often throughout the day.
Then there’s the head trips I take myself on. I think that I should be able to do something I’m failing at and feel guilty for it and have to remind myself that I am now “differently abled” and need to cut myself some slack. Or, I need to run an errand and the thought of going out in public makes me feel uneasy and I have to psych myself up just to go to the grocery store. In fact, I don’t usually go grocery shopping by myself anymore. A small example of my uneasiness: my husband and I were in the grocery store recently and he suggested that I go find something we needed in the produce section while he went in search of something in another area of the store. That meant that I had to walk through the store by myself. I hesitated, feeling a moment of anxiety, then agreed.
I have to hold my head when I am walking so that I can see where I’m going (walking with your head twisted to the side makes it difficult to see clearly ahead of you). With the way I hold my head, I look like I have an elbow growing out the side of it. I feel very self-conscious, and I mean VERY. I usually deal with this one of two ways; I completely ignore my feelings and everyone around me and laser-focus on the task at hand, or I cheer myself on the whole way and smile at anyone who stares at me – depending on my mood, I guess.
I don’t consider myself a particularly strong person, emotionally. At the same time I’m a fighter and don’t like adversity to get the best of me. I don’t like limitations and usually do my best to break them, but at the same time when I encounter an unpassable obstacle I won’t beat my head against it until I have a headache. I will either look for a way around or choose a different path. I try to rest when I really need to rest and push through when I think I can do so without making things worse.
It’s a constant battle physically, mentally, and emotionally. Some days I’m just tired of the struggle – so tired. Today is one of those days. I don’t want to leave my comfy bedroom chair where I can sit and situate my head so that it will be straight and mostly still. I can pretend that I’m normal again. I am typing this right now with both hands and my head looking straight at the monitor. I can do this because when my head tries to turn I can push it into the back of the chair and stop the turn. My head is mostly pressed into the back of the chair, but at least I don’t have to hold it with my hands. Small victories, I’ll take them!
You know, life doesn’t stop because we have challenges no matter how debilitating or life-altering. I can let this disorder rob me of my quality of life and my joy, or I can not. Most of the time I choose the latter. Even when I choose to watch life go by for awhile I know that I can jump back in when I feel stronger and ready for more of the rollercoaster. Life doesn’t stop, but we can get off and take breaks now and then, and it’s okay. It’s when we completely give up that we’re in trouble and I personally am not ready to completely throw in the towel. I might be getting close, but not yet. And really, that’s up to God anyway.
As long as I have breath in me and my Jesus keeps strengthening me, I’ll keep fighting the good fight – taking breaks when I need to be refreshed. It’s how it is with us humans. We are not all-powerful and endlessly energetic. Especially those with chronic diseases and disorders. Our tanks run low more quickly than completely healthy, able-bodied people. You know, 12-year olds. Hahaha! I’m kidding. There are 70-year olds who could give those 12-year olds a run for their money. I know a couple.
Ok. I’m feeling a little better now. Sometimes it helps to just talk things out a bit. Thanks for listening. I appreciate you! I think I’m about ready to put my pads on and get back in the game. 🙂