Mitochondrial Diseases Support Group

I have been a member for sometime but I don't post anything. I sit back and enjoy reading and sometimes offering help to others if I think I can. Not sure if what I am going through merits discussion, here it goes anyway.

I recently had my first sleep study and am happy it is over. I got myself all worked up over it and it was really nothing. Because our disease and some of our symptoms are not very common and in the past I have had difficulty with medical professionals taking me seriously, I had it in my head that the people at the sleep center would not understand me, my condition and my sometimes embarrassing things I have to do in order to actually go to sleep. But, as usual I make a big deal out of nothing and the study went fine and everyone was nice, "we have seen it all," said the guy at the center, which made me feel so much more at ease.

Awaiting the results, I am afraid of the future and that my symptoms will continue and threaten my career and future. I have worked hard and don't want my recent crash and current "lack of energy" to be the reason I have to give up on what I love. I understand yes, it is a new chapter in my life and its not really "giving up" on anything, but I feel anxious because I was not prepared for this and I need some reassurance that I will be prepared for future difficulties. There is however, no way we can prepare and be ready for everything.

I am trying to be proactive and making changes in my exercise and nutritional habits and this makes me feel good as it gives me some control over my disease and my symptoms. I have a big fear of being called lazy. I see it happen to people and even to myself. When I first became symptomatic and was at my worst and unable to work full time, my doctor was like, "well then what do you do all day." I think this kind of treatment has built up and made me self loathing and depressed if I cannot live up to the standards I once put on myself. Does anyone else have difficulty with this or being treated poorly by professionals or perhaps other family?

I can see that my post for a discussion does not have or make a point, but rather is a collection of things I am going through. Some might tell me to "put it in a journal entry," but I hope you can understand I wanted people in the group to read it and hopefully respond to one or a few things I mentioned. Thanks for taking the time to read this.
Posted on 08/19/09, 01:08 pm