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vestibular conditions: on the same trail

3/11/2019

2 Comments

 

vestibular conditions // vestibular migraine support

vestibular migraine disorder
Dear Vestibular Warrior,

​I know there’s a part of me that you understand completely because you’ve been in the same all-consuming moments that come with vestibular stuff.  You’ve probably had moments where you felt so out of control of what was happening to your body, and that may have left you feeling entirely powerless. 

I hope that you’ve discovered that you are certainly not powerless.  You are magnificent and relentlessly fighting back.  I know this because just the fact that we're connecting means you care big time, and you’re striving to feel better... to feel like you.

The truth is that there's a lot of variety with vestibular conditions.  At the same time there's a string running through it all, so even if my experience isn't identical to yours, there's certainly a resemblance. 

Vestibular stuff disconnects us from the world in so many ways.  Sort of ironic because in the same sense, it's connected you and I. 

The more I talk with other vestibular warriors, the more I realize that so many of our stories have the same chapters:  trying to get a diagnosis, finding a doctor that gets it, handling the anxiety, coping with the fact that most people won't understand what it's like, figuring out what helps and what hurts, uncovering strength we didn't know existed, finding gratitude that only comes with climbing tough mountains... the list goes on.  

One of the first doctors I saw after the initial intense attack told me that I could feel like this for a month.  In that moment, that thought crushed me.  How could this last a month?  How would I get through...?  I laugh as I type this because what I didn't know then was that symptoms would be 24/7 for much longer than a month...it was close to 15 months before I truly touched "normalcy".  And I feel beyond lucky that I can say that.  I know that's not the reality for many.

I believe that gaining a soulful perspective on how I wanted to feel was my guiding light.  I know in the beginning it was "I want to feel how I used to".  But, over time that evolved into, I just want to feel grounded in this body that's fought like hell for me.  I didn't want to go back to before,  because I believe I became more "me" having gone through this experience.  I had walked an incredibly bumpy trail and gotten to the  other side of mountain... No way I was going back to the start. 

I eat foods that fuel and nourish my wellness and I believe in the power of food as medicine.  For me, that's a plant-based diet.  There was a period I even questioned my vegan diet- something I'd embraced 10 years earlier (read this post, if that interests you).  I use essential oils, which was a bit daunting when I was brand new to them, but quickly turned into something that helped me heal and support my body both emotionally and physically.  That's my supportive system, but certainly not the entire picture.

I know that putting my diet at the forefront and having a holistic support system was a huge step in a beautiful direction.  Like I was walking along the trail for days with rain pouring down and someone walked up next to me with an umbrella... and a  muffin.  That's why I share all I do-  I'm just passing out umbrellas and muffins on the trail.  You get me, right?
vestibular migraine disorder
I want you to know that I will not pretend that our stories are the same, only that we've probably walked on some of the same paths.  And if we pass each other along that trail, let's swap stories and root for one another.

From,
Em- a Vestibular Warrior


Vestibular Warrior Resources // YouTube Videos [Vestibular Warrior] // Oils Routine for Vestibular Warriors // Contact Em
2 Comments
Barry Cole
3/28/2019 02:18:58 pm

Hi Em. Thanks once again for your letter. While I’m not personally ready to post yet, it truly helps me to read yours. Sometimes I feel like I am educating my doctors when it should be the other way around. My first doctor told me to wait a year to see if my symptoms went away. He was actually annoyed with me when I would go back to him in desperation. If I knew then what I know now, I would have been much more insistent, or found a new doctor. Maybe my first post should be about encouraging others to advocate for themselves. Looking forward to your next post.
Barry

Reply
Em link
3/28/2019 05:50:37 pm

Hi Barry. I certainly can completely relate to feeling like I was educating my doctors. I'm sorry you went through that too because while I can look back at it now and feel stronger and empowered, in the moment it was heartbreaking to get what felt like no help. Desperation...that's exactly how I describe it. It's such an aching desperation for something to make it better.

I love the idea of encouraging others to advocate because that's what we have to do in order to thrive and get the support we need to heal and thrive.

Reply



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  • VESTIBULAR HUB
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