I am the storm
Fate whispers to the warrior, 'You cannot withstand the storm.' But the warrior whispers back, 'I am the storm.'
Storm In Their Blood, Evangeline vs. the Machine
Time to be honest here…
Chronic illness can really stink.
I have been almost homebound for the past 6 weeks. Ever since I checked off an item on my bucket list - going to the Eric Church concert in Jacksonville in mid-April.
The concert was incredible - he played his new album, Evangeline vs. the Machine, from start to finish non-stop. Played my favorite songs. Music that has gotten me through so much over the past few years. I experienced it with one of my best friends and my husband. It was all I could have asked for
Stephie and her husband at the Eric Chruch concert in Jacksonville, FL
There was no doubt that it was going to be tough on me - between the Patulous Eustachian Tube (PET), Vestibular Migraines (VM) and Superior Canal Dehiscence Syndrome (SCDS), a concert is basically my brain's worst nightmare. To try to minimize impacts, I wore 45db ear plugs, my prism sunglasses and a baseball hat. But in the end, it wasn't enough to keep me on my feet.
Immediately after the concert, I knew I was in a full-blown vestibular migraine attack. My husband and friend had to help hold me up as we walked to the car because I couldn't support myself. I was spinning. I was foggy. I was totally screwed, and I knew it! BUT! The concert was amazing. While for most, concerts are not a once-in-a-lifetime thing… but for those of us with complex ear issues, it absolutely could be.
I thought it might last a week or so… a week later, I was no better off. I came home from work, absolutely shattered, went straight to bed for a few hours, then got up, had dinner with the hubs, and went back to bed.
It's been 6 weeks.
I'm still not driving.
The workday is exhausting
I'm still not confident that I can do anything.
And just when you think you may be getting over the hump, BAM! My system decides “NOPE” and throws me back into migraine.
The one thing I wish everyone would understand about dealing with chronic conditions is that things can change minute by minute. You can start off on a walk with the dog feeling fine. You look over your shoulder too fast, and suddenly you are spinning and nauseous. The unknown of when and why symptoms will hit is completely unpredictable and it makes getting out of your head, and back into the world, daunting and seemingly impossible at times.
If you are stuck in a cycle like I am, I want you to know you are not alone. Even though sometimes it feels like being on an isolated island, where no one understands what you are dealing with, there are many of us in this community who get it. I may “overshare” about my situation with those around me, and I know there are times it bites me in the a$$, but it is only in sharing what we are dealing with that we can educate those around us about living with an invisible condition (or 2 or 3).
Hang in there - with all the medical miracles that science has found, one day there has to be a cure for many of these rare ear conditions that affect so many. It's impossible to believe that researchers will not find a better way to close an open eustachian tube. Or plug tiny holes in the superior canals without a craniotomy. Or a way to eliminate weeks-long migraines.
Not believing is not an option.
THANK YOU FOR READING,
love Stephie x
