Tuesday, December 15, 2009

Awww -- dystonia

Dystonia has been kicking my butt these past few days. One of the hardest parts of this for me has been the constant up and downs -- I can walk, I can't walk, oh, wait, yes, I can, nope, wish I brought my wheelchair. Always thrilled when I can walk and so glad I can but it is a judgement call on some days and some days I get it wrong.

I have been doing more, being active and having more fun. It is all good and healthy. The frustrating part is that the more I do, the more symptoms kick in, the more exhausted, pain, burning muslces, diffficulty getting around. And yet, when I take it easy every day so I do not have an increase in symptoms I tend to get bored, restless, boring, tired, depressed...

Sometimes trying to find just the right balance seems so impossible and exhausting. My body wants me to crawl back in bed and sleep all day because it is so tired and mad from yesterdays activities, or maybe just the fact it's cold outside, who knows. Sometimes I think my muscles decide to all tweak out simultaneously just for the fun of it.

This is a negative post and hopefully nobody decides to check in today. I have a long list of things to do today and I am going to do my best to do them.

I know I am extremely lucky for getting around as well as I do and my heart goes out to those who cannot, whatever the reason may be. Sometimes it just feels good to vent and then move on. That is what this is for me. I am venting while I drink my coffee.

Feeling better now. I am off to start my day.


  1. I understand. I can give this advice (although I have trouble taking it):It's okay to have a bad day. I had an emotionally bad day,yesterday. The spasms were there...but the emotional pain of dealing with C.D. on a daily basis really got to me. With Dystonia, one of the hardest parts is the unpredictability of the disorder--one day the spasms are bad, one day they're better, one day the pain is horrific, one day the pain is better.

    I hope you have a better day tomorrow!

  2. Yes, I can definately tell you know what I mean. The unpredictability of it all. Also, as you say, it is okay to have a bad day. I will try to remind myself of that in the future and not beat myself up for it. Thanks for leaving a message. I really appreciate hearing from you.

    I hope you are doing well.