"It doesn't matter how slow you go as long as you do not stop." -Confucius
This is the story of how our journey with vestibular disorders (Meniere’s and Vestibular Migraines) began. It is my husband who has the diagnosis but we are in this together. Here is the story:
Let me set the stage. It’s the summer of Covid 2020. I’m on edge because I’m getting ready to head back to work at an elementary school. My mind is already spinning about the potential dangers, both real and imagined, that await. Little did I know that a seemingly ordinary Saturday would set the stage for a series of unforeseen events that would alter our lives in ways I could never have imagined.
On August 23, 2020, on a beautiful summer Saturday morning, Josh (husband), headed out for a bike ride, seeking some exercise and fresh air in the mountains. While he did that, I was at home, playing referee to my 2 and 4 year old, anxiously awaiting their naptime so I could catch a quick break myself. As soon as he walked into the house I headed upstairs.
Meanwhile, downstairs, Josh tiptoed around, skillfully maneuvering between toys and scattered storybooks, ensuring our little ones were comfortably settled for their afternoon nap.
Just as I was nodding off, bam! A text from the hubby, asking for me in the kitchen like it was an emergency. Incredibly annoyed that my nap had been interrupted, I went downstairs. I found him on the floor of the kitchen, saying he was unable to move, lying there after an intense bout of vomiting. Was he having a heart attack? Should I google the signs? Call 911? My mind was on overdrive.
He managed to convince me he wasn’t having a heart attack so the 911 call was put on hold. We got him water (maybe it’s dehydration!), food (he did a lot of miles on his bike!), and managed to get him upstairs to rest (his body is just overworked!). He recovered by early evening.
Fast forward to a little later in the week when he tells me the world is spinning and that he needs to lay down. In the midst of him vomiting, I tell him he needs to call the doctor. He brushes me off and says his electrolytes are just off. I calm myself into believing this is true.
The week goes by and he seems to be on the up and up. Another one-off I tell myself.
Then the big one hits.
Houston, We Have a Problem
The kids had a day off from daycare, and, because I had to work, Josh took the day off to take them to the zoo. They were bouncing off the walls with excitement! They even sent me pictures the moment they got there. But then, not even 20 minutes later, I get this text from Josh that made my heart stop – “I need you to come here right now.”
I mean, you don’t want to get a message like that when your husband’s out with the kids, right? My mind went into overdrive. Was there an accident? Were they all okay? I dialed him up immediately. His voice was quiet and shaking, and he told me he was at this park near the zoo with the kids when suddenly everything started spinning. Can you imagine? He somehow got them out of there, swaying and stumbling, but safely to the car. I could hear the kids in the background asking why they couldn’t go into the zoo.
He was so close to breaking down, telling me to hurry because he couldn’t even move. I was a mess, I left work in a frenzy and raced to the zoo. And when I got there, I found them in the parking lot – kids buckled in their seats, and Josh was throwing up and crying in the front seat. We drove home in this heavy silence, my nerves shot and trying to figure out what was going on.
The kids, innocent as ever, kept asking why we couldn’t go to the zoo. That was tough. I had to keep it together, you know? So, I told them calmly that daddy wasn’t feeling well, all while tears were threatening to spill from my eyes. Tough day, really tough.
The episodes just kept happening more often after that. Eventually, I finally convinced him to call the doctor. After a bunch of tests, including an MRI, they gave him a potential diagnosis: Meniere’s Disease. Finally! We had a name for what was going on. I felt a wave of relief because, hey, with a diagnosis comes a cure, right? But nope, turns out there’s no cure. I was like, “Okay, let me research this more,” and the outlook wasn’t great. So, I started firing off questions: “What else could it be? Is there anything treatable?” And then I found some other illnesses that had cures. I thought, “Yes! One of those is going to be it!” Josh wasn’t as optimistic.
Josh had a follow-up appointment and the doc’s assistant did a few more tests. I’m at work, totally on edge, waiting for Josh’s call to give me the lowdown. Turns out it’s this thing called benign paroxysmal positional vertigo (BPPV). Sounds scary, right? But hey, it’s super common and guess what? There’s a straightforward fix! I was ecstatic, telling a coworker how the docs had it all wrong and it was the best-case scenario.
They did this maneuver on Josh, the Epley maneuver, and said he had to sleep sitting up for three days. Easy, right? But then, reality hits again. A few days later, I’m at work again, and I get this call. Josh is stuck outside the dentist’s office, lying in the grass because he can’t stand up. Panic mode. I call an Uber, rush there, and there he is, using a reusable grocery bag to puke in. Not cool.
Helping him up was tough. We finally got into the car, and it’s dead silent. I glance at Josh, and he’s struggling to find his balance, the dizziness hitting him hard. This guy, who hardly ever cries, is breaking down, saying he can’t handle it. Seeing him like that tore me apart. I reassured him like crazy, even though tears were streaming down my face too. Tough times, you know?
Since then, we’ve picked up a whole bunch of diagnoses along the way—Meniere’s was the first, then came TMJ and Sleep Apnea about a year and a half later. Not long after that, Vestibular Migraines joined the mix, and just a month after that, the latest addition was Ankylosing Spondylitis (AS).
While it has only been three years, this is half of my daughter’s life, ¾ of my son’s life, and half our marriage. But it hasn’t all been bad, in the midst of these challenges, there have been glimpses of brightness. Moments of closeness, resilience, and unexpected joy that have helped us navigate this difficult journey together.