my story: vestibular disorder & beyond

October 31, 2016 was the day that everything changed.  It has midday that I was hit with a vestibular disorder, but wouldn't understand what that even meant for many months later.

In short, it flipped my world upside down.  I went from feeling in control to losing my sense of self in the world, quite literally.  Feeling off kilter, like I was living on a moving dock, looking at my life from the outside, anxiety coursing through my system, were a few of the symptoms that consumed my days.  No breaks- my symptoms were every second of every day.  I had no warning that this disorder would hit and certainly wasn’t prepared for it. 

I had experienced a cold/ear infection the week prior, but didn’t think anything of it.  I expected my body to heal and I would be just fine.  I never could have predicted what happened next.  I was sitting at my computer at work and everything just shifted in an instant.  I felt sideways, off kilter, completely ungrounded and I couldn’t focus on the words on my computer screen.  I stumbled across the office to find my friend and tell her what was happening. 

But what was happening? 

I felt so off kilter, disconnected and I had no sense of myself.  That night as I went trick-or-treating with my boys (because I was determined to be a part of it), I was feeling awful with anxiety coursing my system, disconnected and scared, but I had it in my head that I would sleep this off.  It honestly did not cross my mind that this was anything more than cold symptoms.  Being so naïve was a blessing in a weird way because had I know the battle ahead, I’m not sure how I would have understood it. 

There are no easy words to describe the onset of a vestibular disorder (in my case vestibular neuritis which triggered vestibular migraines, which I’d find out over a year down the road).  I would say things like, “imagine you’re standing on a moving dock and you’re frightened and can’t get a grip on the anxiety”.  The thing is I never would have understood it, until I was sinking deep in it.

And I felt that way every second from that moment on, for months... 

There is so much emotion wrapped into the early moments because it’s all so terrifying, confusing and heartbreaking.  I can’t pinpoint the exact moment, but in those early months I accepted that this wasn’t going away overnight.  I pleaded with the universe that I’d just wake up and it would be gone, but I was quickly learned that it just wasn’t the case for me.

This is when my ‘fight’ mechanism kicked in.   This just couldn’t take me down.   There was no way I would allow it to.   So I cried a lot (and then sobbed harder) and then I picked myself up and took action.

I held tight onto potential for improvement + gratitude for all the good in my life.

I ate a plant-based diet to fuel, support + help my body heal every single day.

I used pure essential oils to support my entire being and cope with the many all-consuming symptoms, both physical and emotional. 

I worked with a holistic doctor and neurologist (eventually) and around two-years in, with persistence and hope, I started to truly feel like myself again. 

I entered into my version of 'recovery'.

All I had longed for throughout the battle with this ‘vestibular stuff’ was to feel like myself.  I knew I was still there deep within, but my physical wellbeing had been so hurt (it felt destroyed) and my heart wounded, and it would take a fight to come through.  I uncovered my relentless drive to push forward, my heart to help others and inspire a perspective of gratitude, and my passion to discover how this experience would shape my life.​

I went into survival mode for weeks, and then months.  I still have those moments.  If someone had told me the day it hit that I would still be dealing with vestibular symptoms years later, I would have told them, ‘‘no way, I can’t”. 

But here I am doing just that and I’m leading a happy life. 

Not without its challenges, but I’m grateful for it all at this point.  It’s been a journey of really getting to know myself.  It’s been finding happiness in dark moments because it certainly exists.  I’ve seen many doctors, explored both holistic and western medicine approaches and learned a lot.  And I’m still learning, constantly.  I believe that I had vestibular neuritis, which trigged vestibular migraines.  I also believe that I’m a vestibular warrior. (And by the way, if you are dealing with a vestibular condition, I know that you are a vestibular warrior too).

Recovery for me means that most days I feel pretty great. 

I’m not entirely without symptoms, but I am at peace with this condition and I am empowered and armed to support myself along the way.  I know that this is not the ‘end’ and I will continue to expand my knowledge to fully understand the roots of this vestibular disorder. 

I’m sharing my experiences because I am  overflowing with gratitude from the progress I’ve made and I know there are others that can benefit from hearing the story of a fellow vestibular warrior.

I would love to hear your story, because we all have one.  Whether it's a vestibular condition or something else, we all can inspire one another and flourish.

xoxo,
​Em

{for my full story with a vestibular condition + guide to thrive, visit here}
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