Thursday 10 May 2018


I never quite know what I’m supposed to do on a day ‘celebrating’ such a dastardly disease - or perhaps it’s just for enlightenment, for awareness... not that I ever remember. When I told Mum it was World Lupus Day, she asked me, ‘So what are you doing for today?’ And I replied, ‘I am enjoying my life today.’

Which I am. I wore enjoyment in the form of colours, bright lime green nails and shoes, and a rope of beads around my neck, a craft present from my beloved Mary Haybittle - for rainy days with the twins - can't remember which twin made this particular one - and the nurses were very complimentary. Colour has that effect in hospital.

I pretended my NHS coffee was Real Cawfee and later, when I was free of the cannula, I took myself off to the Jubilee Garden for a few sunshiny moments.

When I rang Mum to ask if she’d fetch me home, she said the iron had packed up and could we go to Sainsbury? 'Mais oui,' said I, placing the beads more prominently to better enjoy the freedom of being me on this day, May 10, 2018.

Did I wear the beads, headdress style, at Sainsbury? Bien sur!

Here is a little video wave I made in the hospital garden, just to say hello 👋🏽