Come walk a mile in my shoes.....tired yet?

1 in half a million people have it. Guess I hit the jackpot. Ataxia you heard of it?

A click of a button and google will tell you the ins and outs of this crippling condition, thousands of websites will give you a detailed scientific explanation of this debilitating disease. But what's it like to have Ataxia? Now that's a tricky one to understand, let me help you.

This past week I've been obsessively searching through many forums and support groups trying to gain other people's perspective, different angles. Because (you might not believe this but..) even though someone is plagued with the same neurological label as someone else, they most likely won't have the exact same experience as someone else, because everybody is unique and different! I know right. I was shook.

Ataxia is a fairly new concept to me, so I haven't quite come to terms with how to explain it in a simple way that even someone on love island could understand (*coughs* Hailey *coughs*) (I know, mean but, the likelihood of her reading this is the likelihood of someone having Ataxia)

Ataxia is progressive, it gets worse, for me this is slowly but surely. So when I choose the "boring" option on the menu or cancel on you to go to the gym I'm doing it to make sure this progression is as slow as possible. For me, Ataxia is a feeling of being disconnected from the world, I can't choose when or where this happens, it's one of life's many surprises. Imagine you're walking down a hill wearing heelies, now imagine that hill is never ending. Now imagine that you're drunk.

But, that's just me, odds are that the majority of the population won't relate. But get this, other people with Ataxia would most likely explain their story a little differently too. This interested me. So I thought maybe others with a little more life experience under their belts could share different perspectives and ways of explaining their situation. Because just over a year ago even to me the word 'Ataxia' was a foreign concept.

So in a bid to help others understand here are a few ways that others would explain their Ataxia and it's knock on effects

So simple yet so unbelievably true was "Sleeping for England", 2 hours? That counts as a short nap!

I loved this one! "I feel like spaghetti; I'm all over the place. My legs have a mind of their own. I want to go one way when my legs want to go another way. I can't "slow down" when you want me to." Poetically put and really builds an image don't you think?!

Another painfully accurate way of putting it was this gem "Able minded but challenging. It’s like being drunk trying to walk but knowing what’s going on around you."

This is the perfect metaphor:

"Imagine walking on a balance beam. Now imagine walking on that balance beam all day long. Seven days a week. 365 days a year. Every step you take. Cross a room? balance beam? Go to the bathroom? Balance beam. Now imagine how you'd feel at the end of the day"

Imagine walking on ground that looked like this:

Now imagine running on ground like this. Seems fun for a day right?




But now you've got to wake up and do it all over again.






That's what it's like to have Ataxia....tired yet?