On A Boat: Why My Vestibular Disorder Doesn’t Define Me

On A Boat: Why I Don't Let My Vestibular Disorder Define Me, a story about conquering fears of migraine, vestibular disorders, chronic pain, and invisible illness. #migraine #vestibularmigraine #HYHdiet #chronicillness #spoonie

Two years ago my Vestibular Migraine made me feel like I was on a boat all the time, constantly rocking and swaying. But last week I finally faced my fears and got on an actual boat. For someone with a vestibular disorder like Vestibular Migraine, even taking a vacation can seem daunting. Traveling by car, plane, or boat can be enough to trigger the symptoms of vertigo, ataxia, and dizziness. Then you factor in different altitudes, a disrupted sleep schedule, the inability to cook your own meals all the time. It’s enough to make you not want to take a vacation at all! However, above all else, the desire to challenge yourself is something you never want to let go of.

Earlier this year I mentioned that we got $1600 in flight vouchers for giving up our seats on an overbooked flight. We decided to use that money to go back to Maui, where we attempted to vacation the year prior. At the time I was about 9 months into my diagnosis and my Vestibular Migraine was slightly improving every month, but daily dizziness was still a common occurrence. I was smack in the middle of the Heal Your Headache diet, had just torn my meniscus which I needed surgery for, and came down with a cold on the plane. All of this culminated to a lot of laying around in our hotel room, staring at a beach that was a huge pain in the butt to even walk on. This year I wanted to test my boundaries on what I could handle, which included my biggest fear to date – getting on a boat.

From what I can tell, anyone with a Vestibular Disorder or Migraine Disorder has one great fear that plagues them. Whether it’s traveling alone, getting on an airplane, going to a party – it seems to define who you are and what you plan your life around. I’ve tried to get past a lot of this by telling myself I don’t want to miss out on life, but sometimes the fear is too great.

This trip, the desire to conquer my fear was too great. I trusted the incredible progress that I’ve fought for the past two years. I also put trust in the tools and knowledge I’ve learned along the way that have helped me get to 100% days. I was going to see those fishes and turtles!

We booked the sunrise snorkel which meant getting up at 5:00am and having very little time to consider backing out. I took along my sea bands, not sure if they would be helpful, but hoping they would provide me with a placebo effect at the very least. The waves were rough that day, but the snorkeling was still wonderful. Sadly, I referred to all of the fish by their Finding Nemo names when pointing them out to my husband. As in, “look at that Gil!” (Moorish Idol) and “there’s Bubbles!” (Yellow Tang). We even got about 5 ft away from a Crush! That’s a sea turtle in case you’re the only person in the world who hasn’t seen Nemo.

I knew it was a major victory when my husband started getting a little sick during our second snorkel stop. Although I wasn’t feeling great, I also wasn’t curled up in a ball on the side of the boat crying to get off…which is how I felt about two years prior without even being on a boat.

 On A Boat: Why I Don't Let My Vestibular Disorder Define Me, a story about conquering fears of migraine, vestibular disorders, chronic pain, and invisible illness. #migraine #vestibularmigraine #HYHdiet #chronicillness #spoonie

As I looked back at pictures, one thing stood out to me: my sea bands. I hated that they were in my picture. That I even have to think about wearing them in the car or on a plane. I was letting that symbol of them remind myself that I have a vestibular disorder that may follow me around for the rest of my life.

What I failed to realize is that this illness doesn’t define me at all – I define it. I am so much more than an illness, and I’m stronger because of it. I’m less fearful to little things that used to scare me – like hiking down rocky cliffs…or posting a picture of me without makeup for the world to see. And I take nothing, like a boat ride, for granted.

On A Boat: Why I Don't Let My Vestibular Disorder Define Me, a story about conquering fears of migraine, vestibular disorders, chronic pain, and invisible illness. #migraine #vestibularmigraine #HYHdiet #chronicillness #spoonie

PS: I totally ate a ton of (not migraine safe) poke and it was awesome.

For my travel tips, don’t miss this post!

Alicia was diagnosed with Chronic Vestibular Migraine in 2016 and has been able to successfully manage her symptoms through medication, supplements, lifestyle changes, and the Heal Your Headache Diet by Dr. David Buchholz from Johns Hopkins. She's the owner of The Dizzy Cook.

8 comments

  1. Sheryl Lawrence

    I love this so much! And I’m so happy for you, Alicia. A warrior and an inspiration to those of us who share your condition❤️.

    Reply

    1. Alicia

      Thank you so much for the support and the kind words, Sheryl! I just hope I can help someone conquer that fear that is getting them down too.

      Reply

  2. N. B.

    I love this post more than you could ever know! I’ve had the symptoms of vestibular migraine since I was 7. I’m now 24 and it affects me daily. However, knowing that there’s other people who truly understand, and have overcome the beast gives me ideas of what I can do to conquer each day. Thank you.

    Reply

    1. Alicia

      Wow, thank you for letting me know. Every day can be a challenge with this, but you are not alone at all and you always have my support anytime you need it. 🙂

      Reply

  3. ellen

    I think you are beautiful and don’t need make up!!! I have suffered with migraines, motion sickness, and now vertigo. I have been out of work struggling with this,I can no longer do my job as a mail carrier and have gotten nothing but grief from the US Postal service. Still waiting on a position indoors sadly Im not holding my breath. Anyway I think more and more people are becoming aware of the devastating affects of migraine, vestibular migraine and related conditions. We must stay strong together!!! Thank you for all the amazing advice, recipes and awesome web site for the poor souls who suffer with this. Blessing to you and your family. Ellen

    Reply

    1. Alicia

      Hi Ellen, You are so sweet. I am so sorry you have to go through this, I completely understand. Do not hesitate to hire a lawyer if you ever feel uncomfortable or like they are not supporting your needs. I so wish I would have known I could do this back when I was on FMLA. Fossil also treated me like trash and I wish I would have known my rights back then. You have more power than you realize! On the bright side, I agree with you that Migraine and Vestibular Disorders are more recognized every day! One day I think it will be just as commonly known as celiac – it’s certainly more prevalent! Hang in there, I promise you it does get better.

      Reply

  4. Mark Harrison

    So how was the motion of the boat? Did it bother you?

    Reply

    1. Alicia

      Actually what bothered me most was being in the water after about 3 hours. The waves were pretty rough that day and I was getting pushed around a lot, so I started to get a little nauseated. Once I got off the boat, my stomach calmed down but I still felt like I was on it or being pushed around in the waves for a few hours after. But I did better than a lot of other people on the boat who didn’t have a vestibular disorder!

      Reply

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