So I have had episodic Ataxia type 2, since I was about 11 and I am 35 now. It is one of the more rarer types of ataxia, so it is tough to find other people, who have it. I have the coordination problems in episodes, except the nystagmus (involuntary eye movements) which is there outside episodes too. There are certain triggers, which can set off the episodes. I have found that if I do things I'm comfortable with, episodes are less likely to happen, as certain triggers like anxiety, stress, excersion can set them off. I do work full time, and although I have episodes occassionally there, I am usually okay. Maybe because I feel more comfortable and at ease there with people I know.
MY problem is that I am quite afraid of challenging myself. For example I think to myself that I wouldn't mind going to the cinema. Then I get all negative and think an episode is bound to happen at some point (it has before) so it puts me off going. Guess my condition is very situational too. At home it wouldn't happen. So then I end up doing the things I usually do and nothing changes. I am not sure how to get out of this mindset.
Although I feel more comfortable when I'm not alone as if anything happens I could have some help. People have presumed I was drunk before and a more disabling episode happened in town about 13 years ago and on that occasion someone called the police. I guess I am worried about what people think too when I am not myself. It is embarassing.
I am hoping others can relate to this.