Posted in Blog, Meniere's Puzzle Podcast, Uncategorized

Balance Awareness Week..who cares? Nowadays…me.

There’s national days for everything nowadays…there’s even a National Bloody Mary day …and a National Hangover Day, go figure.  But there’s an awareness week coming up that I do give a hoot about…at least I do now. If you’d asked me last year if I had heard of “Balance Awareness Week” from Sept. 15th-Sept. 21st…I would have cocked my head like an owl. Who? What?

But if you’d ask me today…I’m aware. Fully, 100% aware, unfortunately. The kind of awareness that only comes when you’re personally suffering from a disease, or have someone close to you suffer.

National Balance Awareness Week’s goal is to raise awareness for those folks who have difficulty maintaining balance due to vestibular disorders. Meniere’s Disease is one of these disorders…a bad one. No cure. And lo and behold, that’s the one I got diagnosed with this past spring. And yes, I had to google it. Who can remember that name, anyway? Meniere’s? It’s hard to spell…..

Any vestibular disorder sucks. Period. To add insult to injury, people can’t tell you have it. It’s an invisible disease. Always there, but never acknowledged.  Well, until you have a bad vertigo episode. And if you have one in public, then everyone knows. At least, they  suspect maybe you’ve been drinking too much.  And that’s how I explain it to people when they ask what it feels like. Remember those fun bed spins after a long night of partying in the 1980’s? And what happens after the spins? That’s what it feels like. Sometimes everyday. And without the fun beforehand.

I’ve been lucky. All my vertigo episodes were at home. And I was by myself. Nothing like getting in touch with oneself while sitting in the bathroom all night feeling nauseous. Worshiping the porcelain Gods, we used to call it. (Except again, without the fun beforehand)

Like many, I keep my daily routine as normal as I can. I’m on a low sodium diet. Can only have #1 cup of coffee a day…Tragic. (and no caffeine after that cup). I still work out (although some yoga poses are out of the question now), I still bike, walk, do weights,  kayak, and yes, still swim. Although I have to be mindful at all times of being “thrown off”. My balance is comprised now -it just is. And will always be. My inner ear fluid doesn’t work like it’s supposed to. And the bonus with Meniere’s is, you usually lose your hearing in at least one ear-it’s already happened with my right. But hey, I wear aids that bounce the hearing to the other normal ear, so that’s something. Some have it both ears, so I’m grateful. Still vain as hell, though. I matched the aids to my hair so you can’t see them. Hey…baby steps. large_A-balancing-act

I’m so fired up about finding more about this disease, that I started a podcast called The Meniere’s Puzzle Podcast (it’s on spotify, breaker, radio public, google podcasts, and pocketcasts) Still waiting for the giant itunes/apple to pick it up…all in good time. Hopefully this will help me and the listeners put some of the pieces together.

So…this year, I’ll be sharing some stories and listening to other’s during Balance Awareness Week. After all, there’s 69 million of us that suffer somehow from some vestibular-something-or-other. We’ll band together. Hey….perhaps that will help us all stay upright.

 

 

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