My neck felt strangely tired and achy. I had just been for an afternoon walk and was now relaxing, watching the tennis. I struggled to heave myself out of the recliner. As I slowly stood up and stretched, I realised that I was unable to raise my arms over my head. I staggered to the sink for a drink of water, my hips refusing to cooperate by moving.
The first inclination that something nasty was happening in my body was pain – both upper arms and radiating across the top of my chest.
The young woman who sat down next to me chatted away cheerfully with her nurses. The majority of people around me were usually being treated for various cancers and tended to be quiet and subdued.
My rheumatologist looked at me with a glazed expression, obviously puzzled by my ongoing episodes of my hip joints refusing to move against gravity. My fluctuating weakness pre-immunoglobulins made little sense to him.
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.
There was nothing neutral about what was happening to my body. My own immune system had advanced a full-frontal attack on its own muscles.
Beauty for Ashes 