Ataxia is such a lonely disease

I've had this disease for six years now, at the very start I could still walk unaided albeit a little shakey but I could still walk. People are always telling me to stay positive and how there are people out there who have it a lot worse. I am always thinking about that yet it doesn't mean that I can't be a little sad about my situation. When people say that to me what I hear is that I have no right to be sad and I should just stop whinging. These people have no idea how it feel to gradually lose control of your body and know that things will never get better. Just remembering that I could just go for a walk whenever I felt like it is the real punch in the gut, now if I want to go somewhere I have to make sure someone's free to take me, I can't go out for long because I'll get tired and i have to make sure someone is available to pick me up, so basically I have to plan any social outing around someone else's timetable. And that is why I hardly go out, that and... what can I really do??

Sometimes I even struggle to wake up in the mornings because in my dreams I can walk even run! And then I fall getting out of bed. Sometimes I really struggle, to stay motivated is a daily struggle that no one really knows.

There may be no cure for this but you can slow it down, staying active is one way and the way I do that is by exercising like mad. Mind you, you still fall and stumble even if you do exercise and it all seems rather pointless and at times I have almost given up, but then after I have a good cry I get up because when it does get worse I have no one who can really help me. No one in my house really understands what I'm going though and this is not a very sensitive household!

I don't have much to look forward to, my sister has been dangling the prospect of a holiday but she wont settle on when and she could just change her mind whenever, plus we don't really talk or have anything in common. I remember last time we went away and we barely said 10 words and most of it was about the weather! I am just so scared of what the future may hold for me. I feel my life just slipping me by, at 35 is it already over?