My Dystonia

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Comment by Browneyes27 on November 3, 2009 at 1:51pm

I now how you fell I to have DystoniaI usto only have it in the lifte side of my body, that was 2 years ago, now it is every were it is so pain full. I have been off medications for 3 years now it inerfears with my other illness, my family sometimes understands othertimes they dont. You are brave hang in there.

Comment by suej on June 8, 2009 at 9:18pm

Thank you some for sharing. There are days were I feel no one really understands what is going on. The other day because I have so many problems w/ my hands I was dropping everything or breaking (by dropping) everything I touched. It is so frustrating when all I want to do is pour creamer in my coffee and I drop the container which breaks open and spill creamer all over the floor. Then when I try to get something out of the cupboard I have another spasm and knock everything over. Finally ,pouring milk into my cereal I miss the bowl and spill milk on the counter. I have a spasm in my foot so it's hard to walk and my knee buckles again luckily I caught myself. All this before 9:00 am in the morning. I felt like crying. Hang in there we are all in this together and here to support each other.

Comment by tortimomma on June 2, 2009 at 3:37pm

You have explained 'my world' very well. I so much empathize with you. Thanks for doing this vid, eventhough I agree that your family should see you having a 'bad' day; I have many more bad than good. Such a trapped- in feeling...not wanting to go out or let anyone in.
Take care of yourself.

Comment by Lene on May 11, 2009 at 5:32pm

I really appreciate lissamail your video. They say a picture is worth a thousand words and its true. When I sat my family down to look at a dystonia video (that one that was recently produced...hum I can't remember the name of of. Anyway when they saw that video they all seem to understand my condition a lot better.

I think personally if you really want your family to see your condition, go ahead and video tape yourself when your having a bad day. That will really be effective.

I hope your family will soon understand. Thank you for sharing. I am so glad though you were having a good day. I understand about the house too!!! Every now and then I hire a company (merry maids to clean) It makes me feel better.
Blessing, Lene

Comment by Ellen S on May 3, 2009 at 12:50pm

Such an awesome job sharing your experience lissamel. I sat here listening feeling everything you were saying. Thank you for sharing your life here in such a personal way.

Your family and friends really need to understand that stress doesn't cause dystonia, but it can make it worse. Your adrenal issues cause additional stress as well. When the dystonia gets worse, you feel more stress and it's like a snowball rolling down a hill.

Blessings to you