When I was 25, I was living life to the full. Then, literally overnight, I became ill. It was 15 April 1998, a date I will never forget, when I woke up in severe pain. I had to crawl on my elbows and knees to go to the bathroom. I had pain in all my joints – it even hurt to breathe.
After a string of appointments with doctors investigating what they thought was arthritis, a chest x-ray showed benign tumors in my lungs the size of my fist. It was then they diagnosed an autoimmune disease, Sarcoidosis.
One-in-100,000 people get Sarcoidosis, and half of them have no symptoms. However mine was a very aggressive form that affected many parts of my body, including my brain and central nervous system, but the biggest issue for me was the pain.
By September 1998 I could no longer work so I took 10 months sick leave. During this time, I had three separate periods of hospitalisation, a total of three months in hospital.
The symptoms progressed to uncontrollable muscle spasms, called myoclonic jerks, with my arms spontaneously shaking or swinging wildly, and I had limited muscle strength. By February 1999 I went into a wheelchair, and stayed in it for three months.
Later my entire nervous system became 'inflamed' leading to extreme nerve pain. I had a sensation of 'pins and needles' and felt as if my nerves were burning over my entire body.
As I could no longer manage the stairs to the apartment I shared with my partner, I moved into my mum's house, and lay in bed all day. Then I became depressed.
After another admission to hospital for more pain relief, the doctors told me the disease seemed to be under control and the only thing they could do was assist with pain relief. This is when they suggested the ADAPT program.
I wasn't allowed to join the program until I was out of my wheelchair and more independent, so I started with regular counselling sessions, as well as physiotherapy, while still at home.
A few months later, I joined the ADAPT in-house program at the Royal North Shore Hospital, where I was assisted by physiotherapists, psychologists, doctors, nurses and rehabilitation staff. This was the first time I had been out of bed, in a routine, for many months!
ADAPT taught me that pain does not necessarily equal damage, and that my disease was forever, so I had to cope. This was a big change from looking for an answer.
ADAPT wasn't a miracle cure. It was hard work. I spent one month at home, practicing the strategies 24 hours a day. Within two months I was able to reduce my medication. Then, 12 months after becoming ill, I returned to work, doing two hours a day, two days per week!
In the end I managed to change the way I thought about pain, and this changed the way my body felt it. My confidence came back. Today I still feel pain every day but I don't focus on it – and I never take any pain medication.
I am now married to my partner, I have two beautiful young children, and I am a senior director within financial services, leading a large team in eight locations around the world. I feel very fortunate, and am very proud of myself for deciding not to give up!