Feelings of frustration

Add a Comment

Comment by Jeanie on April 19, 2009 at 11:31am

Chronic pain is part of this devastating dystonia,It can be manipulated(not really managed) at times & other times I just have to retreat..away from outside stimulus.Is's okay to be angry.Try to figure out at who? Especially why? Don't let it turn on you...remember,you havn't done anything wrong.You will have to slow down a bit over time or it will do it for you.I like to set my own pace rather than let dystonia do it.It is bossy and will take more than I can give.Ofcourse,all said and done. .when a storm hits,I'll be there to pick up my pieces

Comment by Deanna on April 12, 2009 at 9:31am

Tel me about it. Oh yea!

Comment by Sarah on April 11, 2009 at 11:57pm

Oh man, I don't have dystonia, but I have a chronic pain issue, and the "invisible illness" part of my life is what makes me miserable. If I only had one arm, or a broken leg, people would accept my whining so much better than they accept it now. <3

Comment by Lisa Bratcher Carley on April 9, 2009 at 8:20pm

Ellen,
Hey I miss talking with you, sorry I have had some other things latley....but I don't think the dystonia support group would be hurt or would hurt you in anyway, in my experience I have found.....most people have the same fears but everyone is afraid to speak up, Perhaps...What do you think would happen if you went to the group and told them your fears....I think they would accept you....don't you? Putting ourselves out there is so scary, but I often find it odd how we can be so on the fence and then realize others have your same fears! Just a thought? What do you think?
Hope you are doing well....I will e-mail you
liz

Comment by Lisa Bratcher Carley on April 9, 2009 at 8:14pm

Deanna,
Hi I have not been on this site for a few months but, when I first read your blog, I can totally understand. It is like, 'if people don't see you fall over or pass out' then they think you are totally fine. I am also very much on the same page with you of not wanting to say no. I realized I had to for myself, because I realized I was living for everyone else! Not a good way to live! I started to count everytime I said no each day....then I looked at how stressed out I would have been each day if I would have said yes to those things everyone asks of you! Looking at the two and the difference was amazing for me.....as women we are trained to say yes....I think we need to start training ourselves to say NO!
Hope you are having a pain free day!
truly
liz

Comment by Ellen S on April 9, 2009 at 2:40pm

Hi Deanna, I kind of know what you mean. Unless you're one of the few who has seen me in full storm, most people don't realize that there is a problem. We're lucky. Still, I want to go to a local dystonia support group, but feel that I will be out of place - like I don't belong - because I'm not having spasms that moment. I even feel that by going I would be somehow be-littling those there who suffer constant spasms and pulling. I don't want to hurt anyone, or be hurt, so I stay at home. I quit most of the things I love because I have to sit around doing little of nothing all day to keep from spasming. I keep that smile on my face tho... it helps with the frustration. I don't know where I fit exactly, but I know I'm where I'm supposed to be right now...