It’s almost vestibular awareness week. I share these dates, I share the VeDA site this time every year, but I never really explain why or what it is. To a certain extent I am afraid to do, to have people understand some of what I deal with…what my chronic illness is like because it can seem scary if you don’t understand, if you don’t know how careful and how aware I am of my body and what is happening at all times.
So, what is Vestibular? Do you know? Until 8 years ago I didn’t know that word. By the way it is the balance functions of the inner ear. Did you know that your inner ear is responsible for balance, had you ever thought about the fact that there is a part of the body that works for this? I didn’t not really. I knew that my grandma Helen had a balance disorder and that as a kid I thought she was kinda boring and I hated that she couldn’t do so many things, but I didn’t get it and I certainly never thought about it. I often wish I could go back in time and tell that little girl to be kind, to ask questions, to appreciate all that Grandma did considering that battle she was fighting. No one really thinks about the idea of balance and the body until it affects them. This is where my story begins and the reason why I share VEDA every year. Oh, yes VeDA is the Vestibular Disorders Association. There are lots of vestibular conditions, most are little known and even less understood, and I have one.
Here is my Story:
My story began in mid June of 2010. I woke up as normal one day and discovered that my left ear was stuffy and my balance was off. My only real thought being ‘great another ear infection’. I guess in some ways my story began before that June day, all my life I’d dealt with ear infections and in my late teens I’d had some dizzy issues that had been attributed to sinus congestion and ear infections. I dealt with the fullness in my ears and the slight balance issues for a few days before going to the Dr and sure enough I had an infection. A few days later the dizzies were worse they had escalated to full on tilt-a-whirl moments and I couldn’t hear anything in my left ear. When I went back the Dr, my concern being the dizzy, they referred me to an ENT they weren’t worried about the dizzy but the hearing loss.
A week later I had my first hearing test since I was a child and was told that I had a profound, at the time 80% loss, in my left ear. At that appointment my new Dr. told me that she thought I had a tumor pressing on my auditory nerve. Que utter terror!!!, also I wanted to know when the world would stop spinning, they were not concerned. I was told it would fix itself but would likely be a few weeks. A week later I had my first Head MRI…lots of fun for claustrophobe and someone who now got dizzy when laying in any position other than on her right side with her head tucked in. I few days later the doc called and told me the MRI showed nothing but now she wanted to do a Head CT to check some bone. Scheduled that…guess what…NOTHING!!! At this point is had been months, I had had all these tests including having my hearing checked again and it only got worse. I was missing at least one day a week of work due to the dizziness. I’d even had to be practically carried from my room as it turned into a tea-cup ride one afternoon.
Finally, I had another face to face meeting with the Dr. The conversations at home had been about Grandma Helen. See she had Meniere’s Disease, she had a vestibular condition, and what I was experiencing was her life.
In Late August/Early September I finally got the Dr. to take the Dizzy part of all this serious. Yes, loss of hearing bad, but ya know what loss of balance bad too and it was not getting better, it was getting worse. In late September I had what I refer to as the ‘spin around and make you puke test’. No actual physical spinning involved, just lots of tricking your body into feeling like it’s spinning. At the end of the test I had a diagnosis, I had a Meniere’s. There is no cure, there are sort of treatments, and at 29 years old I was young for the onset of the condition. I will add that I was lucky most people wait years for a diagnosis of Meniere’s. It is generally a diagnosis of elimination in which you spend years doing one test after another to eliminate causes and more common conditions, because of my familial history I had people who were knowledgeable and who pushed to find out if this was it, there is also believed to be a genetic component.
At 29 years old I was positive that my life was over. My dreams where done. I was a preschool teacher who couldn’t spin, couldn’t bend over, couldn’t guarantee that the word wasn’t going to become a merry-go-round at any moment. I tried, I struggled, and I fought for normalcy. For a little over a year I continued what I was doing before realizing it wasn’t working anymore. I was terrified, I was miserable, my co-workers were rightly frustrated, I was seriously depressed, and angry at the world. Putting on a happy face for families and for my amazing kiddos was wearing and that exhaustion just made things worse.
I left a job that I loved and tried to figure out what my new normal was, what my new dream was, what I was going to do with my life now that I fully believed I couldn’t do what I loved.
I spent many years after my diagnosis, and really the onset of symptoms, terrified. Living in a world where your body can betray you at any moment is scary. There is a reason so many with Vestibular conditions have PTSD. Eventually you figure it out though, for me it took about 3 years of despair and giving up before I figured out that I wasn’t willing to give up my dreams and I was going to figure this life with Meniere’s out.
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It has been just over 8 years since the onset of my Meniere’s. And it has been 5 years since I decided I wasn’t going to give up on what I loved, working with kids. I returned to teaching 3 years ago and I teach without fear most days. I know what my triggers are, I know how to deal when things get off balance, and I have less of those whirligig moments.
I still have moments when I reach out for the wall. I am careful about getting over tired. I occasionally have those ‘drunk’ moments. I have lost 90% of the hearing in my left ear.
BUT, I am blest! I watch the people in my support groups who are still where I was…even years later, I worry about when those bad bad days will return but I try, so very hard to not let them rule my life. I don’t physically spin about anymore, and I think about how I move but my life is MINE and I get to do what I love! I fought and continue to fight for my dreams…I pray that I will never lose them.
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LEarn more about VeDA and vestibular conditions at their website vestibular.org
It’s amazing how the human brain, well at least my human brain works. Last night was my works auction. For the last few years I have left the auction in a puddle of emotions. Some bad, most good, all overwhelming. So, here’s the thing for any newbies to reading my blog, not that anyone actually reads it – sorry that’s that that stupid brain of mine – I have anxiety. Over the past four years or so I have become much more willing to talk about that…well in writing at least. I am also an extreme introvert with some pretty gnarly social anxiety. Once I get comfortable with people those issues greatly diminish and people forget that with new people, or busy environments I struggle a lot. I don’t know how to interact in party situations, I literally don’t know how to make small talk, and I can’t get my brain to relax and stop second guessing myself and worrying about what all those people are thinking about me to just settle in,relax, and enjoy.
