Despite my outward calm, inwardly I was being crushed by despair. Resolutely holding back my tears, I methodically packed my bag. After five long days in hospital, alternating with four even longer sleepless nights, I was now heading home, none the wiser as to the cause of my myriad of symptoms.
I wasn’t faced with the daunting prospect of travelling to seven cities in seven days, with seven plane flights to get between them all. I only had a single three-hour car drive, but I held little hope that getting to the Myositis Discovery Program in Brisbane would be logistically possible.
July had been altogether too exciting. Two hospital admissions, IVIGs, a lung abscess, followed by a month of antibiotics. Now I was hoping for a few boring months where the only excitement was a gradual return of strength, which would hopefully be joined by a bit more energy.
As he leant back in his chair, my rheumatologist took a long look at me and said: “This is a nasty disease.” Just in case I hadn’t taken it in he repeats it: “Really nasty.”
Hearing the kookaburras start to laugh as the sun starts to peak above the horizon signals that the night at long last is drawing to a close. Though lying awake since 4 am, my Fitbit erroneously thinks I am asleep because I move so little.
As I flopped into the recliner chair, my Fitbit ironically informed me that I had just done fifteen minutes of exercise. Little did it know that all I had done was get dressed and brush my teeth!
Beauty for Ashes 