It was while I was working as a full-time Registered Nurse at a specialist paediatric hospital in Sydney that I was diagnosed with a Lyme-like disease. Initially I just felt very tired and run down, which I attributed to my new job and lots of night shifts. Unfortunately, the fatigue didn’t lift, and I started experiencing joint pain, nausea, breathlessness, nerve pains, extensive muscle twitching and fevers. One of the most frightening moments of this illness I experienced was while at work, nursing a baby, where I lost all strength and control of my arms and had to call on a colleague to come and pick the baby up and place it in its crib. The illness continued to progress and reached the point where I was unable to work for a number of months.

It took me four long months to receive a diagnosis. I saw countless different doctors and specialists, in the process being incorrectly diagnosed with Ross River Fever, Post Viral Fatigue Syndrome and Irritable Bowel Syndrome.

Amongst all the confusion of my debilitating and mysterious condition, my mum happened to come across an old photo from a trip to the UK where I noticed a strange looking bite and rash which I had just assumed was a spider bite at the time. It was only then that I made the connection to Lyme Disease. After connecting with a GP in Sydney with an interest in tick-borne infections, I was able get the appropriate testing done and gain a diagnosis for what was, until this point a mystery.

Lyme-like disease has the potential to cause long-term chronic illness if not managed correctly, and has resulted in me having to change many aspects of my life. The nursing lifestyle isn’t known as being the healthiest, with many nurses eating on the run, working nights and burning the candle at both ends, working lengthy twelve hour shifts in order to cash in on the additional loadings. Many nurses will tell you that despite our best efforts, trying to live well whilst working as a nurse, can be much like mixing oil and water.

The biggest change I made was stepping down from my full-time role in the Neonatal Intensive Care Unit and moving to casual work. I now only take on eight hour shifts and no night shifts, and I have also had to overhaul my diet after consulting with a nutritionist. In addition, I work with an integrative GP who has prescribed a gruelling supplement, antibiotic, anti malarial and intravenous treatment program.

This illness experience left me extremely frustrated and to some degree, caused me to begin to question the medical system I had always known and trusted. I clearly had an observable illness, but it felt like no one could help me, finding many of the specialists and doctors I consulted with unhelpful and with no answers.

I began to see the bigger picture of health, the missing puzzle pieces in our current medical system. I began to want more for people like myself, struggling with chronic illnesses. I still maintain that our medical system treats acute symptoms and conditions in a very pragmatic and effective way, but on the flip side there is a huge piece missing when it comes to chronic illness management… these people are the ones that we see presenting over and over again with the same symptoms, or progression of their illnesses, that consequently and unfortunately become an enormous drain on our healthcare system. We often refer to this as the ‘revolving door’ of healthcare. I began to aspire to help people gain more control of their health before acute presentations, and hospitalisation is required, through understanding and treating the underlying pathology and signs the body often exhibits to suggest imbalance; as well as promoting long term positive behavioural changes. I sought to work towards registration as a nutritionist, working on health promotion in the community; rather than a dietician working in hospitals (acute settings). I landed on theNutritional and Dietetic Medicine degree at Endeavour College of Natural Health because I was drawn to its evidence-based, holistic and functional approach to wellbeing; something which really resonated with me following my experience with Lyme.

I’d like to continue working as a nurse, and when I become qualified I hope to work in a creative role where I can combine both my nursing and nutrition worlds, in order to address the current gaps in our delivery of healthcare. I’m not exactly sure what that job looks like yet, but I know with time the vision will develop.

There is a huge deal I would like to see change in the hospital system. I look forward to a time where the meals diabetic patients receive do not include white bread and low-cal jelly, and eating disorder patients are managed by nutritional goals (or optimisation) in addition to weight gain. There needs to be a place for both “macronutrients” and “micronutrients” in order to move towards the philosophy of using food as medicine.

As for me, the cost of the experience has been high – I live week to week at home with my parents as I am unable to afford rent, and there are weeks when I can spend half my time in bed due to fatigue and pain. My future is somewhat uncertain – some people with Lyme-like disease can require many years of treatment, however I have been on treatment now for twelve months and am seeing incredible improvements. I am hopeful to be on the other side of this long tunnel, and am compelled to get out there and start making some colossal transformations on how we see health.

This article was originally published on Nurses Uncut and has been republished with permission.