Full disclosure. I had a completely different topic in mind for this week. However, my weekend, Meniere’s and a friend taught me a little something, and I wanted to share it. So here we go…

All of us who live with Meniere’s often struggle with making plans. When newly diagnosed, we wonder if we’ll ever be able to enjoy family events, holidays, social occasions, or even a happy hour, ever again. “Will there be anything on the menu that fits my low sodium diet?” “Will I be able to hear everyone?” “What if I commit, then have to cancel because I don’t feel well?” Or the biggie, “What if I have a vertigo attack?”

Early on, and sometimes even now, my solution to this dilemma was to limit my social life. And I’ll tell you, there is a side of me that is very social. My home to me is a safe space, it’s quieter, and I can monitor my diet to the point of obsession. However, I realized that strategy began to lead to a low-level sadness, to an occasional bought of FOMO, and most definitely, the fear I just wasn’t fun anymore.

This past week, I was invited to a friend’s birthday party and looked forward to attending. On Friday, I was excited to wrap up the work week, get a little spruced up and head to the party. Keep in mind, I was also worrying about managing my symptoms and fretting about what food would be there. “Should I have alcohol?” “What if I get vertigo?” A mixed bag of excitement and anxiety, for sure.

As I got ready to go, the ringing in my ears seemed to get louder and louder. “Am I getting a little dizzy…a little woozy feeling?” Uh oh.  Social Anxiety. There it is. Of course, you’re going to show up. I kept telling myself, “You are just stressing out and worrying yourself into feeling like this.” We all do it, and ironically, stress can actually trigger our symptoms.

Of course, at this point, I'm running late.  I took all of my meds as a precaution, and drove off into the night (and the rain, another trigger) heading to the party. In the car, I feverishly munched on dried fruit and chugged water in order to hydrate and get some risk free food into my system. 

At the party, I was greeted by friends, festivities, and a buffet of catered dishes from a popular, locally owned Italian restaurant. Oh boy. What to do. That decision we make. Those moments we decide, old self pre-Meniere’s, or new self.  “You know what?” I thought, “I’m going to take care of myself; however, I’m not going to stop living.” I ate a small piece of chicken and I sampled a small helping of the pasta offerings. I enjoyed a couple of adult beverages, alternating with 16 oz. bottles of water. I even shared in the birthday cake too. Later, we turned up the music, playing everything from Prince to Garth Brooks. Elton John to Dua Lipa. We danced and sang into the wee hours of the morning. 

The remainder of the weekend was spent catching up with friends, drinking coffee, munching on popcorn and snacks, and watching old movies. I minded my diet, yet enjoyed myself. I made sure I drank a lot of water. And oddly, I took no decongestants, allergy tablets, no Meclizine, no diuretics…and was symptom free.  Honestly, I’m still kind of marveling at the whole experience. Grateful is an understatement for the times shared this weekend.  

Meniere’s is a baffling disease, isn’t it?  We can be so careful, follow the rules to a “T,” and still find ourselves succumbing to our symptoms. Yet other times, like this weekend, although mindful, I didn’t obsess. I didn’t stay in my “safe space.” I let myself go a bit and fully experienced the fun and spontaneity of a party with friends, without experiencing symptoms. It was truly freeing. 

Yet, as we made breakfast yesterday, I was back to checking labels and determining what was “safe” for our meal. Even after such a fun evening prior, the dark cloud of Meniere’s was sneaking up to threaten my good mood.  Meniere’s was reminding me of that constant internal battle of reconciling all the good of who we really are, and coming face-to-face with who this disease is trying to make us. Suddenly overwhelmed, I found myself in tears, apologizing for being difficult. For causing the simple task of making breakfast to become so challenging. 

“I get so tired of this,” I said defeatedly. My friend stopped, looked at me and said, “Your anxiety isn’t necessary. I don’t have anxiety about this at all. Your anxiety about all this can project anxiety and stress on to others when it’s not even there. You’re concerned this is hard. This isn’t hard.”

Yep. Our family and true friends love and care about us. They’re not thinking we’re a pain, quite the opposite. Thinking I’m a pain is my baggage. It’s my concern because I mourn how I used to be. And all the while, the people around me, around you, hope the best for us, want to see us, and they want us to participate as fully as we can. They want to help us enjoy and experience our best lives.

As the holidays approach, my hope is that we all learn to kick our social anxiety to the curb. Rather than fearing what might happen, let’s stop staying safe on the sidelines, and enjoy what is happening. Yes, we have a chronic illness. Yes, we should mindfully care for ourselves, take our medication, eat well, drink our water and respect our body’s signals. Yet all the while, may we open our hearts to be fully present, fully participative, fully alive, fully appreciating the gift that is in every moment.