The Price we pay by the book Mind over Meniers

“Life should be lived to the point of tears.” – Albert Camus

I’m brain fogged, dizzy, and thoroughly exhausted. I’ve struggled over every word on this page.

But after having such an incredible weekend, I just don’t care, and I still have a smile on my face. It’s been a long time since I’ve felt this good on a bad day.

Recently, I’ve felt like my life has stagnated. I work from home and haven’t been going out as much as I used to. It can get pretty lonely at times. I stay busy so I don’t always notice it, but it still affects me. I’ve watched myself slowly become more introverted, doing nothing as it took a toll on my wellbeing.

But recently, I’ve started to make an effort to have more fun. I’ve tried to keep an open mind, and to say “yes” to more things, even when I’m afraid. And I think it’s finally starting to pay off. This past weekend, I walked around a nature preserve, went out to dinner for a friend’s birthday, and went to a music festival.

I would normally never consider doing that many things back to back.

I knew the risks going in. I was well aware that I probably wouldn’t feel very good once it was all over. That’s assuming I even made it that far. With Meniere’s disease, having fun often comes at the expense of how I feel. It’s a hidden tax on our health and the price we have to pay.

But even with how I feel today, I would pay it again gladly.
Saturday:

Going into the weekend, I wasn’t sure if I was going to have the energy to do anything at all, let alone everything I had planned. Halfway through the day on Friday, things had suddenly started to go downhill. I was in the middle of writing a chapter for my new book when I was hit with a tidal wave of fatigue that lasted through the rest of the day.

When I woke up Saturday morning, I was bummed out to find that I was still exhausted. For most of the morning I just took it easy. But after lunch, I started to feel a little bit better and decided to commit to my plans for the day. So my wife Meg and I set out for Green Cay, a beautiful nature preserve near our house. I figured a nice walk outside could only help me feel better, or at least more relaxed.

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Green Cay is a state park made up of 100 acres of reconstructed wetlands in the middle of South Florida, somewhat close to the everglades. It was beautiful, serene and surprisingly empty. In an hour of walking we saw only a small handful of other people. It was like we had the park to ourselves. We had such a good time and got to see some incredible wildlife. Along the one and a half mile raised boardwalk path, we saw hundreds of species of birds, turtles, snakes and frogs. We even saw several alligators, one of which was a 12-foot-long behemoth nicknamed Jaws by the park rangers.
Jaws the Alligator at Green Cay

Jaws the 12 foot long alligator!

I felt a lot better afterwards. Good enough, in fact, to stick to our other plans for the evening: going out for sushi for our friend’s birthday.

When I was diagnosed with Meniere’s disease I was sure that sushi would be ruined for me. I couldn’t even imagine it without soy sauce. But I was wrong. Sushi continues to be one of my favorite foods and one that I can eat without worrying. And this was an excellent sushi restaurant.

Dinner went off without a hitch and I came home feeling good, and excited to go to the music festival on Sunday.

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Sunday:

Much to my surprise, I woke up Sunday feeling great. I had an incredibly hard time falling asleep the night before and only slept for a total five and a half hours. As I tossed and turned, I was sure I would feel like garbage in the morning, but somehow I didn’t. So after I got up, I started getting ready for the concert.

Every year, around the end of April, the city of West Palm Beach puts on an epic five-day music festival called Sunfest right alongside the Intracoastal waterway. Fifty different bands played this year alone. I typically try to go for at least one of the five days, and this year, Meg and I had chosen Sunday, the final day of the festival, to see one of our favorite bands: The Alabama Shakes. (Check out two of my favorite songs: Gimme All Your Love and Future People)
Thomas Cordy – pbpost

Photo by Thomas Cordy at the Palm Beach Post

We arrived around 2 PM, and after a quick rain shower, it was clear skies and sunny. Actually, it was kind of hot. It was about 85 degrees Fahrenheit, but with the heat index, it felt like it was well into the 90s. Lack of sleep, loud noise, and hot humid weather can be a recipe for disaster for me, but despite everything, I still felt good.

I had my high-fidelity ear plugs, sun glasses, and brought my own snacks. I was ready for anything, and after we watched several bands, I even made sure to leave the festival for a little while to rest up and to eat a dinner that wasn’t traditional fair food.

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I was totally absorbed in the show. Completely immersed in the present moment. And the music was excellent. All in all, we were at the festival for close to seven hours.

To feel so good, and have such a good time… it was heaven.
Monday – I Have No Regrets:

As I opened my eyes this morning, I finally feel the weight of the weekend on my shoulders.

But when I first woke up, a funny thing happened. I felt terrible, but for a moment, I wasn’t sure why. When I realized what had happened, I couldn’t help but laugh.

Over the weekend I was having such a good time that I didn’t even consider the potential aftermath, at least not during the festivities. I was so absorbed in the experience, that I never stopped to consider the consequences of my actions.

I honestly can’t think of any other times this has happened to me in my five years with Meniere’s disease.

When you live with a chronic illness that causes fatigue, you have to make hard choices on how to spend your energy. You can choose to have fun, but not without making tradeoffs, and more often than not, it’s your health on the line.

But as I reflect back on the last few days, I’m starting to realize that as hard as I work to keep my health, and as hard as I try to avoid difficult days, sometimes it’s worth it to just go out, have a good time, and live with the consequences. To venture out beyond my comfort zone and live a little bit more than I normally do.

As terrible as I feel today, I also feel alive in a way that I haven’t felt in a while, and this past weekend feels like a victory. I had an amazing time and Meniere’s disease can’t ever take that away from me, no matter how hard it tries.

You may have had to give up a lot of the things you love in life. You may be limited in what is still physically possible. But I challenge you to consider saying “yes” the next time you have the opportunity to do something special, even if it means you will have to pay the price. If you prepare for every possible outcome, and have a way to get to safety if things go south, you can enjoy yourself, too.

Because sometimes, feeling sick for a few days is a better choice than living with regret.

And a decision I would gladly make again.
You Also Might Like To Read These Articles:

The Challenge of Going Out to Eat with Meniere’s Disease
Welcome to Mind over Meniere’s
The 80-20 Approach to Chronic Illness and Fatigue

Inspirational chronic illness, fatigue, having fun, Meniere’s disease, Regret, Risk

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