Looking back over the years, my husband and I can now see that vestibular symptoms were slowly creeping into my life.
November 2013 marked the beginning of a journey that there was no turning back from. The catalyst for where I am at today started with a diagnosis of strep throat, double ear infection and a sinus infection. By April 2014, five rounds of antibiotics and two rounds of steroids later, I still had a sinus infection that stumped my ENT. By then I also had three types of headache, brainfog, cognitive, dizziness, and my already severe tinnitus that I have had since my son's childbirth in 1983.
I was diagnosed that summer with bilateral SCDS and had my first surgery in September 2014. My second SCDS surgery followed two months later. The only decrease in symptoms from both surgeries was the lessening of my most severe headaches. Then followed the development of bilateral PLF diagnoses and surgeries to fix them. 4 PLF surgeries followed with no improvement in symptoms. After this I was left with a diagnoses of bilateral vestibular hypofunction and soon after that a further diagnoses of a cranial abscess resulting from my first SCDS surgery. 19 months and seven surgeries later and essentially worse off than when I started.
Last year I started to dig myself out of the grief and frustration of a shattered life. My mental health taxed to the limits and back again. Learning to live and find joy were my main motivators to move forward. I worked with my psychotherapist to fill my toolbox with the tools I needed to help myself manage, cope and thrive in my new life. I couldn't go back to my old life but I could move forward into a new life. And this became my main goal as it contained the keys to happiness and joy in my life.
I couldn't ride a bike anymore so with the help of my dear husband I was able to get a three wheel 15 speed trike. This proved to be a huge turning point for me in my recovery. It empowered me once again to be physical and provided the freest movement I have experienced since 2014. I cried, good and happy tears.
Since then my husband and I have been hitting bike trails like the Springwater Corridor and have increased our rides to 22 miles a pop. It kicks me to the wall with sensory overload and all of my vestibular symptoms, but riding and the freedom of movement and the physical activity outweigh the downside for me. It's a wonderful feeling to feel strength returning in my body. I easily spend a couple weeks letting my symptoms calm down after a ride. I have even flipped my trike over once and kissed the pavement. But I lived and once I had some bandaids applied, dried my shocked tears, we hit the trail and completed our ride.
Another aspect of my old life that I have been able to bring forward into my new life is my mixed media art. This was so helpful with many aspects of my recovery to a new life as it's how I express. My work is much more isolated now so that I can manage my vestibular overload. But the creation of two FB art groups gives me the caring, sharing and learning with others that floats my boat. Another piece that fuels my life now is the FB PLF support group I created and the two other vestibular support groups that I co-admin. All of these groups again fill the need for caring, sharing and learning with others that I crave in my life.
I have learned that I am made up of many parts. And those parts create a whole person, which is me. To be happy, find joy and purpose in my life again, I must care for them all. It's a funny thing to say, but I know in my gut that this course change in my life, that touched everything and turned it upside down, is not without purpose. I don't know exactly what that purpose is but I believe with blind faith that I have purpose and that I can still contribute and move forward with a happy, new productive life.
My purpose in sharing some of my story with you, is the hope within me that I can ignite hope and courage in others to venture forward through fear and doubt to find their hope and joy once again in life.