I was born with this disorder. I actually got diagnosed 23 years ago. It’s been a challenge to deal with, but I’ve always managed to get through it with a smile on my face. I’ve actually been lucky enough to avoid serious injury for the most part. The falls, however. Oh, the falls. Now in my mid-40s, all the latent damage from the impact of hard falling over the years is making itself known. I hurt. Constantly. There’s not a waking moment where I’m not in pain or discomfort of some kind. It’s starting to depress me pretty badly. I’m not in a life-threatening depression or anything, but I wouldn’t take it all that hard if I was diagnosed with something terminal tomorrow. The people in my life who love me and need me, and who I love and need in return, are the reason I keep going. In their absence, I probably wouldn’t even be here at this point. Many of you fellow ataxians get it, and I’m beyond happy that there is a place like this where I can (pretty much anonymously) unburden or rant. Thanks for reading.
Believe me, we hear you and have complete empathy but you unfortunately have this and it is what it is. We completely understand but if you did something stupid, what if a cure were to happen after you did something stupid?! I’m not trying to make light of your thinking but we all got a bad break.
Just to ease your mind a little and show you that you’re not alone, here’s a little of my story which shows you’re not alone. I’ve had this illness for over 50 years since I was 21. Just as I was entering my adult years. I was a very good athlete growing up and looking forward to a professional baseball career. All that changed one morning. Point is, it sucks! BUT, what other choice do I have now? I just have to make the best of what I have. Here’s my introduction post here: Hi - my introduction Hope something helps there.
Keep your chin up and keep posting here.
Thanks for replying Chas. I think you might have missed where I wrote this:
I’m not in a life-threatening depression or anything
I was just venting
I saw that. Just showing that your post was seen. Good luck. Venting is a good thing.
completely understand and agree that it is very reassuring that we can vent here, knowing that we are not alone. I personally do not have flu jab … I have had shingles vaccination as I know that is very painful. My GP has persuaded me to take beta blockers to control BP to prevent stroke but I have refused statins. Best wishes