Back in 2014, I was a super-fit 40-year-old who had left life as a personal trainer and Ironman Triathlete behind to join the Royal Australian Airforce (RAAF) as an aviation fire fighter. I was living the dream as the saying goes. In January of 2015, whilst training for a long course triathlon, I started feeling weak and out of breath while doing basic training and conducting basic fire fighting tasks. Putting this down to nothing more than a cold I continued training hard. Progressively, the symptoms continued getting worse, however, I wasn’t actively listening to my body and again, continued to train.
February of 2015 came around and late one night, having just finished a night shift the day before, I felt extreme pins and needles in my hands, feet, and legs that would not go away. I felt like I hadn’t slept for days and my temperature was severely elevated to the point where I felt like I was about to self-combust (I later found out my temperature was 41.5°C). I went straight to the local hospital’s emergency department and was admitted straight away as after I saw the triage nurse, I basically collapsed on the ground. At first, I was wrongly diagnosed as having rhabdomyolysis due to my physical training volume for an upcoming race. However, after a few hours, I started feeling weaker and weaker and gradually lost all feeling in my feet and lower legs to the point where I could no longer move my legs as they felt like lead weights.
A neurologist was assigned to me and diagnosed me instantly with Guillain-Barre Syndrome (GBS). I remember at the time saying to him, “That’s great doc, how long will I be unable to train for?” Within 24 hours of being admitted to hospital and a mere 12 hours after being told I had GBS, I was transferred to the Intensive Care Unit (ICU), completely paralysed up to the neck, where I was intubated via a tracheostomy. This would become my new home for 103 days. Whilst in ICU I had deep vein thrombosis, pneumonia and a pneumothorax to name just a few of the conditions I developed. I also had a catheter for 115 days straight. I was treated with five rounds of plasmapheresis to help clean my blood of any antibodies, however, this did not work at all. Many times, whilst in ICU, I asked my partner to let me die or to turn off the ventilator as I was in such immense pain and on so many pain relief drugs, I couldn’t tolerate it anymore. Thankfully she ignored those requests.
After three and a half moths in ICU, I was finally starting to get some movement back in my hands and arms and after being taken off the ventilator, was transferred to a rehabilitation hospital that I would call home for a further five and a half months. I had to learn to talk, to use my hands, to write, to use my legs and feet all over again. This was one of the slowest, painful things I have ever had to endure in my life, and I am sure the physiotherapy staff must have wanted to harm me at times as I was not the most pleasant person to deal with. After starting rehab bed-bound, then moving to a wheelchair and then onto a forearm support frame, I graduated to wearing an ankle foot orthotic and was able to walk on my own by the end of October 2015. I was finally discharged from hospital and had bright hopes for a full recovery and resuming my career in the RAAF. I worked super hard with a fantastic team of health professionals to get strong again, however, after three years of trying, I realised I would have to live with the fact that I will always have bi-lateral foot drop and have to wear ankle foot orthotics permanently. A nerve conductivity test determined that I had extensive myelin degeneration and axon damage with no chance of regenerating or recovering. So, at the beginning of 2019, I was medically discharged from the RAAF.
Due to the GBS, I have a range of other health issues now including diaphragmatic palsy, sleep apnoea, acute sinusitis and essential tremors in the hands. However, being a part of the Invictus Games for Defence Force veterans, I realise I am lucky, and this experience helped to give me a different perspective on my life moving forward. I may not be able to compete in triathlons or skydive and scuba dive like I used to, but I can do things I haven’t tried before and live my best life as I am now.
I have completed a Diploma in Paramedicine and a Bachelor of Nursing. I am now a new graduate registered nurse and am able to give back to others after the amazing care I received while in hospital. I also volunteer with St John Ambulance NSW at community events. Don’t get me wrong, I still have bad days and still have the odd pity party where I wish I could do things as I used to, however, life is really what you make of it. A great neurologist once said to me: “It’s not what happens to you; it’s how you react to what happens to you that will define you as a person”. When I was stuck in ICU, I wanted to punch him for saying that but now I want to thank him for those kind words as they will shape my future.
Lastly, I am also very fortunate to have the support of a very wonderful and loving partner who has put up with so much and helped in so many ways she will never be fully aware of and it’s because of her I am still here today.
If you or anyone you know needs support, call Lifeline on 131 114 or Beyond Blue on 1300 22 4636.
Please check the Rare Disease page(s) for related Support Organisation(s)