C.D. Journals – December 29, 2021

This is exhausting! Fighting my own body every waking hour of every day just gets so draining. So many with this affliction spend most of their days in bed and I can certainly understand that. For me, that would be even more devastating than the disorder itself.

I already struggle with melancholy (I don’t want to say “depression” because I don’t think that’s what it is. I just battle chronic sadness.). To completely give up and not even get out of bed would probably lead to depression. I have been there before and it is not even a little bit fun.

So, I get out of bed every day and do SOMETHING. Actually, I do quite a lot really. I take care of my dog. I take care of myself. I take care of my husband as much as possible, but really he takes more care of me. I do laundry and light housecleaning. I go for walks. I engage in as many of my hobbies as possible and in between all of that I rest.

The resting is the tricky part. First off, I am very task oriented and always need to be doing something so stopping to rest is something I have to make myself do. Well, truthfully, when my neck and back are on fire it’s not so hard to stop. But, if I’m not in significant pain, then it’s definitely hard to make myself stop. I also know that if I don’t rest there WILL be significant pain. I say significant because there is always pain in varying degrees.

Another tricky part of resting is ending it. Once I sit down or lie down and take the pressure off my constantly straining muscles, it can be difficult to get up and start the battle again. So, I have to make myself stop and I have to make myself start again. In between those two things I have to fight my body to make it do what I want it to do however I can. Can you see where the exhaustion comes in?

Add to all that the holidays! I am Mom and Grandma. That’s a lot of pressure at holiday time from my perspective. My grandma always made the holidays extra special when I was a kid and I am driven to do the same for my grandkids. I know it needs to change, but my heart just doesn’t want it to. So, I push beyond my limits baking, wrapping, cleaning, decorating – all the things we women do during the holidays. The only difference now is that I start in October. I’m thinking of starting even earlier next year.

In general, I do the best I can with where I am. Some days I do even better than I normally can because I’m stubborn. I’m also SOMETIMES willing to suffer the consequences depending on how important it is to me and how I’m feeling at the moment. Apparently, making sure my grands have several different types of cookies, candy, fudge, and a cake I’ve never made before for Christmas Eve is worth doing very little for the few days after. I think I must be a little crazy! I’m doing much less for New Year’s.

If you’re reading this and you have Dystonia, or any other type of movement disorder, I would love to hear how the holidays went for you; what you were able to accomplish and how you coped.

Many blessings in the new year! 😊💕

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