Up until 2009, I was a full time teacher, a busy wife and mother of 4 sons, heavily involved in school committees and other fundraising events, attended the gym and dance classes every day of the week, and was known as the ‘Social Butterfly’.
One morning, in 2009, I awoke with head, eye and facial pain. After a week of symptoms, I went to my GP who referred me for tests and then onto an Ear, Nose and Throat Specialist. All of the tests came back clear, but the symptoms continued and worsened until the spasms around my eyes, and the pain caused by the facial symptoms, had me referred to a Neurologist.
At this point, QSuper and Education Queensland deemed me ‘Totally and Permanently Disabled’ and I had to resign from teaching.
After 7 years of trialling many different Dystonia medications, as well as 4 monthly rounds of Botox/Dysport (around my eyes, face, head, neck and shoulders), it was decided that the current treatment options weren’t really helping and that my condition was progressively worsening. It was then decided that I would undergo Deep Brain Stimulation (DBS), in February 2016, in the hope of maintaining some quality of life. DBS is not a cure or an easy fix, and it may take years to adjust the settings to find the right ones for me, but it is my best hope.
I am fortunate to have a very supportive family and very understanding friends, but it is difficult for anyone to truly understand the impact of having a Chronic Condition. Each day is a new day, with different symptoms and ongoing challenges. I continue to look for ways that I can contribute to the lives of others and to society, but it is all so difficult, when the symptoms make life so painful, unpredictable and challenging.
I realised the other day that I felt trapped! I am trapped in a house without transportation; I am trapped in a body that I can no longer control, and I am trapped in a life that is so far removed from anything that I ever dreamed possible.
My dreams and goals for financial independence and security, along with my husband, and for travelling and enjoying an active retirement, have all been taken away.
During my search for information, support and understanding, I discovered Dystonia websites and support groups. As I read about the devastation faced by many of the contributors, I realised that more support was needed in Australia, so the Australia Dystonia Support Group was created. Each day, I connect with people who cannot imagine living another day, suffering as they do, or others who are desperately trying to hold onto their previous existences and then having to face the grief of losing the life they once had. I sympathise and empathise with them, as I often find myself wondering how I will continue to wake each morning, knowing that life as I knew it has gone, and that my life will always involve this debilitating condition. There is no cure! I can only hope for a treatment that will give me a reasonable quality of life.
It is very difficult to express the grief, frustration, pain and sorrow, that are associated with having a debilitating condition, but I have tried to summarise the events and changes that have occurred in my everyday life. My goal is to continue to help support and educate others about Dystonia, and to assist others in their awareness and fundraising campaigns, so that funds can be raised for research grants.
I am one of many Dystonia sufferers. We all hope to spread the word and to gain some recognition and understanding.