Just wanted to share my experience with the rest of you

My family and I went camping this last weekend. I hadn't been camping in over three years. I was very nervous about the whole thing. When the lights go out so does my balance. I have a hard time balancing day-to-day, but without lights I can't hardly walk at all. Plus I knew that it could be taxing and I may end up with one of my migraines, and when I get those I get bad vertigo spells so.... You can see how the anxiety piles up.

I also have to confess that I tend to avoid most activities. Especially ones that involve a lot of people. Loud noises, people moving around, etc. really make my symptoms worse. Sometimes a big event can cause me to be chair-ridden for a couple of days.

But, my nine-year-old daughter was SO excited. Every time I got overwhelmed I took one look at her smile and excitement and made myself overcome. Once we got there and got camp set up though, I was so very glad that I did. When we camp we like to go somewhere that isn't a 'popular' campground. That way there aren't other people around, and it is quiet. Sitting by the campfire, making hot cocoa, and relaxing in the sun almost made me feel back to my old self. I even ventured a walk down by a creek, and watched my daughter and husband play in the water.

I did have one bad morning, and slept awful the first night. Once I got past that though I relaxed and let go of more stress than I have for the past two years.

I just wanted to share this experience with all of you. It made me realize how focused I've become on my disability, and help me put things in perspective. It also made me realize that while i can't push myself all of the time, sometimes it is worth the extra push to enjoy something with the family. I hope that some of you can have the same experience I did. I needed it - and I didn't realize how much I needed it! I think sometimes we all need to find a distraction. It is easy to become overwhelmed and depressed from something that we may not ever get relief from.

Thanks for sharing ... I can certainly relate to the experience.. I 'overcome' when with my grandchildren.. it's like a magic wand waved over me.

Patsy x

Good for you for going camping!!! With ataxia we tend to do the "avoidance" dance when we should try to do normal things. We surprise ourselves sometimes with what we can do if only we try. I took a trip recently to Italy with my husband and step-daughter. They went skiing (something I use to do) into Switzerland while we were there. I took the cable car into Switzerland ALONE and was so glad I did as the scenery was magnificent! At first the thought of doing it alone was scary as I use a cane and had to negotiate the terrain and many stairs just to get to the cable car. I told them I wasn't going to do it. They offered to break up their skiing, come back and go with me but I told them no, once out on the mountain continue to ski. After they left I decided what the heck I'm going to try to get to the cable car and ride into Switzerland. It took me a few hours to do it but I succeeded and was so proud of myself! And I saw some amazing scenery that I would have missed out on otherwise! Yes I was tired afterwards but I did it!!! Life is full of joys and just because we have ataxia we shouldn't miss out...

Thanks for sharing & I will remember your story. Yes, I understand it’s hard not to be protective of ourselves & needs. Because we know what we need. That said we also are so focused on what we need to take care of our ataxia that we can sometimes forget what we need. Funny! Love & fun & laughter & a sense of peace & normalcy.

thanks for sharing this experience