The venetian slats across my window imparted to my room the confining atmosphere of a cage. Towering buildings dominated the view, with only a small patch of sky peaking through at the upper left corner. For the majority of my hospital stay this had been grey and bleak.
My head whirled while my pulse pounded like a drum in my ears. I was dizzy, nauseous and tachycardic, and I had almost reached the point of giving up. I had no idea what to do next. The easiest thing would be to just die. That’s what it felt like my body was trying to do anyway.
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.”
Beauty for Ashes 