I’ve been ‘unwell’ in my current state since 2015/16, so seven years of not understanding the ‘WHY’ about my chronic pain, tremors, and functional neurological disorder. Therefore I needed to focus on one avenue to ensure some kind of normality for myself and my family. I’ve focused on pain management for the past seven years, getting my first pain specialist in 2016. My logic is that with effective pain management, I can live a somewhat normal life, continue working and mask whatever is going on with painkillers.
“I’m sorry about him.”
My wife and I heard this mother say numerous times. We were waiting in line at the shop. The lady’s son had started talking to us and asking us questions. We noticed this made the mother uncomfortable which lead to her making excuses for him, telling him several times to stop interrupting us. The young man was clearly interested in what my wife was purchasing. He turned to me and asked me several questions about what I was holding too. Again, his mother continued to apologise while telling him to stop.
Upon reflection, we have concluded that this year has been the most tumultuous and difficult for our princess and as such for us. We had high hopes for her first year of high school, a timetabled and predictable space, others in her class with similar struggles and specialists that could walk alongside her.
Our dreams of independence, a life away from mum and dad, a career, family and life long friends seem unattainable, and that's gut-wrenching, painful. A scary future that each day I try and push away refusing to accept and I continue to help her dream, push her farther and again try a new strategy to get through a somewhat typical predictable day.