Volunteering gave me a sense of being and a purpose again
My name is Sam from @DiaryofaDizzyMummy. Eight years ago, I was diagnosed with vestibular migraine and PPPD. I have battled with the acceptance of living with these conditions and the daily impact they have on every aspect of my life.
Like many of us with vestibular disorders, I have had great patches and some really dark patches. At the beginning of 2024, I had a big relapse (of which I am still struggling with at the moment). This relapse made me realize that this was always going to be a part of my life. It wasn’t going anywhere. I felt overwhelmed and hopeless, and the little light at the end of my tunnel went out. Being left in the dark with no hope had led me to a place where I truly believed my children would be better off without me.
I started cognitive behavioral therapy, which really helped me with daily coping strategies. After a lot of work, searching in the darkness, my little light started shining again. The dark clouds do still come over some days, but they are easier to blow away. At the end of cognitive behavioral therapy, I had come to the decision that I needed to do something within the vestibular community. I was going to take back control over something that had created nothing but negativity in all aspects of my life. It was going to be turned into something positive. I found the Vestibular Disorders Association website, and I thought about getting in touch for weeks. My vestibular disorder had left me with such little confidence in myself. What could I have to offer? I can’t really do anything, can I? I filled in the form with an idea of making daily videos of life with a vestibular disorder. These would show the highs, the lows, and all the rounds and rounds and shine a light on our world that doesn’t receive enough attention.
I met with David for a chat, and he suggested the idea of joining VeDA as an ambassador. I was overjoyed by this! Me? I can help? I haven’t been able to work for such a long time, but this gave me a sense of being and a purpose again. Finally, I belonged in a world where everyone can relate to being dizzy! I am very new to this journey, but my videos have helped me connect to so many others who say they feel seen for the first time ever! I help spread awareness by educating many who have never heard of vestibular disorders. I help support those who do have them by pointing them in the direction of VeDA, where I know they will be met with kindness and compassion. My family has said they can see I have my little spark back again, and though I still struggle, being dizzy has never been so positive before! Thank you, VeDA, for letting me be a little part of your great mission.
Sam (One of many dizzy mummies)