vestibular condition awareness
Hi there. I'm assuming because you're reading this post that you're very likely journeying with a vestibular condition, and therefore you understand parts of me immediately... because, well, you just get what it's like.
On October 31, 2016, my vestibular something hit. I thought it was a cold virus that would pass. I thought I'd sleep it off. Twenty-four hours later my symptoms had only intensified to the point that walking felt near impossible and the deep rooted fear was coursing my system like fire. After going to multiple doctor appointments and receiving no concrete answers, guess what my next step was to find answers...
You got it. I started Googling my symptoms. I found a lot of really helpful information [especially on VEDA], but I also wanted to hear from someone in my shoes. I wanted to talk to someone who had been in the darkness and tell me they had made it through. I wanted to have a heart-to-heart, so I could find some relief in my fear.
In time I found that support groups existed on Facebook for people with a vestibular something and it meant the world to me (I now run Vestibular Warrior). I also couldn't believe that there were so many other people in the darkness that I was navigating. I had thought that I was alone...
I posted the below in a support group back in July 2017 searching for what my soul needed to hear... and I connected with incredible Vestibular Warriors who took the time to share their stories and help me piece together mine. I was lost. I had so many questions...
Recently, someone told me that they were in awe of how "together" I was about my vestibular migraine stuff. I laughed and could have hugged that person.
I had to unravel to rebuilt the pieces of myself. I went the better part of year feeling like I was floating away...a solid 18 months living behind my window [derealization/dissociative symptoms] and longer with the unease and fight-or-flight mode that my vestibular something instilled.
The experience with vestibular neuritis + vestibular migraines took away every comfort in my inner being. If you're living with a vestibular something, I know you understand. I looked in the mirror at a woman I didn't recognize and I trudged through life in a body that I desperately wanted to feel connected to.
why I wrote my book on my vestibular condition
Around two years in I was finding myself in a grounded body. I felt like I had come back to life. The experience had been earthshaking and I knew I couldn't be silent about it. I knew from being in the darkness that there were so many others needing to find their light. I knew that there were so many looking to be understood.
And so I started writing.
It started with creating Bliss Out, this wellness space, in December 2018, and sharing more about my experience in blog posts.
My next step was compiling the holistic support that had been a huge part of my healing in the Vestibular Warrior Wellness Hub.
Then I started talking about my experience on YouTube (Vestibular Warrior channel).
But I had more to say and my heart and soul felt like it was still processing the experience. So earlier this year, I started writing my book and just let the words flow...I'd write and then put it away for weeks, and then bring it back when I felt ready.
Ultimately, I wanted to create what I so badly needed when I was in the throes of vestibular symptom hell, relentlessly trudging. I wanted to share my feelings and what the symptoms felt like. I wanted to showcase the corners of my mind and the thoughts that danced in my head. I wanted to show a journey through the dark and finding the light.
So my mission with Uncovering Bliss is to expose the mind and body experience and tell my story because if someone out there is trudging along needing a friend on the trail, they can turn to my book. Or maybe my book can be a tool to give to friends/family so they have a better idea what it feels like for their loved one.
I was at a loss for words when I was in the messy middle. The words that flow so easily for me now just didn't exist in the chaotic storm. It was beautifully therapeutic to write my book and so it's a gift to myself as well. A way to release what's been on my heart and soul and hopefully help others do the same.
Thank you for your support and kindness. It means so much to me.