Anger/Pity Party

[spitball]

Hi- Thanks for letting me vent. I have Dystonia of the head and possibly of the legs-at least the left one. I joined a walking club at a gym. Yesterday I walked for 40 minutes and did not need a cane at all-it was so freeing. Today, after 15 minutes of walking, I needed the cane. I realize people have much worse conditions and I am fortunate overall. Yet after knowing I needed to use the cane, I found myself in a foul mood. I finished walking with the cane, but was aggravated at such a difference a day made. Does anyone else go through this? I do see a Psychiatrist. It makes a difference talking with people who experience it. Thanks again.

[san]

Dystonia is strange in the fact that one day it will let you do something and then another it makes you feel totally frustrated by doing the opposite.

Have you had Dystonia long?

[Flake]

I think we all go through this. I have OMD and it affects my speech and eating greatly, although (like you) some days are better and some are worse. Last Friday I played cards with a group of friends, had a good time, laughed, was able to eat solid food and converse; by Saturday evening, it was back to having my jaw clenched shut and speaking unintelligibly and with a lot of pain.

People will tell you that you can't sit around and feel sorry for yourself, and I agree with that; however, having to deal with a chronic, incurable disorder is emotionally on par with dealing with a loss (death) -- there are stages to the process and anger is one of them. You're not alone in feeling that way and you're entitled. Just remember to celebrate the good days as you mourn the bad ones.

[spitball]

Hi and thanks for the replies. I was diganosed in June, 2007 but won't have an appointment with a Dystonia specialist until November, 2007. You are so right to celebrate the good days-there are a lot! Thanks again.

[fireweed]

I know I'm coming to this late, but this is so so typical for dystonia.



I used to have a hard time enjoying the few days my son can talk, knowing he would soon not be able to again. Since then...after much work, I've come to be able to enjoy it more,but still sometimes the whole thing makes me sad. All we can do is celebrate the good days - but kicking ourselves in the butt when that is hard won't help either.

Dystonia is a bugger for sure. It asks so much of the human spirit - of the will to be positive, to survive - in the face of such huge ups and downs, not to mention progression.

We once went on a field trip with a bunch of kids with dystonia. It totally freaked observers out - the kids getting up and out of their wheelchairs, going back into them, etc. That day I was able to laugh about it, but not always.

take care spitfire - you are in good company.

fireweed