My health journey

Some of you may have read some snippets of my story here and there and will probably know that I have had ‘back pain’ which I have spoken about briefly in the past on TV and in print. To say it was just ‘back pain’ minimizes it, and underestimates the far reach of my complex pain problem I was desperately trying to manage and in many ways keep a secret.

I have always been according to my big brother a ‘sickly’ sister,  I spent various periods of time in hospital since childhood with ear, a nose and throat problems,  my ENT issues didn’t really hold me back growing up and I didn’t feel any different from anyone else. However, unlike most other people I have ‘lived’ with pain in my upper body for most of my life.

My pain story continued into my teens after another long hospital stay, and after receiving a lumbar puncture for suspected meningitis I seem to remember feeling persistent lower back and coccyx pain from that point onwards. I was a growing teenager and this was passed off as ‘woman’s’ problems.

In my twenties I searched for answers for my mysterious pain, I wanted a diagnosis, I wanted a cure, in truth I wanted help, support, answers and sometimes I just wanted to be believed that my pain was real.

Pain isn’t something we talk about in society so I kept my battle with pain secret. Over the years, I took a concoction of medications to manage the pain, I have thrown a potpourri of alternative solutions into the mix and have undergone medical procedures and sadly the pain persisted, often not as strongly but it was always there.

The anguish and sheer suffering living in pain causes a person is life destroying and it tore away at every fabric of my life, on a personal level I felt like a failure why couldn’t I fix this problem, was I the problem? It was a constant torture that I endured mentally and physically daily.

Then one day everything changed. In December 2013 I took a phone call from my doctor confirming I had been diagnosed with a rare brain malformation called Chiari Malformation 1. While that in itself wasn’t the turning point for change, it was the catalysis for me to take control of my own healing and health and become my own placebo effect. I needed to become my own cure. I began a journey to explore a better way of living and for me I didn’t want that to include more medication or surgical interventions (although there is a time and place for both and I still fully engage with my health care professionals for my ongoing care)

So I began my own wellness and pain management plan. Through my own research I realized that pain comes from the brain, so I began to wonder ‘could I train my brain not to feel pain or change my experience of pain?

My explorations lead me to train as a clinical hypnotherapist, I began creating my own healing hypnosis to treat my pain and it worked. I then looked at the language I was using everyday about my pain and I wanted to challenge the ‘name’ I was using for my pain. I stopped using pain and began to call any feeling I was experiencing a ‘sensation’

For me it has been a life changing transformation. After a life of pain, I feel now I am living (in my mind at least) pain-free. I have sensations and I manage them everyday.

I always remember when I was on my first 3 week pain management course in St Vincent’s Hospital, I felt I needed support and I looked for a book to read about chronic pain and there was a great selection, however all of the ones I found where from a medical prospective, I couldn’t find one patient lead book which highlighted what pain was like for the patient.

I felt strongly that I wanted to sit and write down about my story which I did in my new Book Pain Free Life; My Journey to Wellness. 

It doesn’t end with the book, managing my pain and living well is my passion and I have learned so much and changed so much since I took matters into my own hands, I want to share my healing and wellness experiences here on my webpage.

Ultimately my advice is Do what is right for you, listen to your body, trust your instinct and don’t be afraid of becoming an empowered patient.