"A typical day would be waiting for my mum to make me breakfast. My mum then rubs my joints and muscles with oil to help them to unstiffen. My mum is my carer, so I am with her pretty much all day, every day.
"I was 25 years old when I was diagnsoed with systemic lupus erythematosus. SLE is an auto-immune condition, where the body's immune system has been damaged. This damage means that the body's natural defences attack itself; resulting in symptoms of extreme fatigue and weakness, joint/muscle aches and pains, which can develop into rheumatoid arthritis, hair loss (which I suffered in 2011), and inflammation of the tissues covering internal organs with associated chest and/or abdominal pain. In 2012/2013, my kidneys became inflamed due to high lupus activity, and I was required to have chemotherapy in order to kill the affected cells which had been causing the inflammation."
– Monique Francois
"My daughter Mae is currently experiencing a flare, which is not yet controlled by her methotrexate, so she’ll get up slowly in the morning, and get ready for school and take her medicine, including an injection once a week. We scoot to school (with me helping when necessary), and then she spends the day there. She has trouble with the stairs at school, but generally has fun with her friends and makes fart jokes and acts like a normal 10-year-old, though she’ll probably take some additional painkillers at lunchtime.
"After school she goes to activity clubs a couple of days a week, but we have to be a bit careful not to overdo things. We scoot home, and sometimes she’ll have a blood test at home, followed by lots of cuddles with the dog we got her to help her overcome her needle phobia (which worked very well). She does some mindfulness, and plays. She’ll typically read until we drag the book off of her, and then we’ll try and convince her to have a reasonably early night.
"Mae sometimes sleeps badly during flare-ups (she didn’t sleep through the night until she was 6, when methotrexate completely alleviated her symptoms), and we’ve recently introduced her to the ‘spoons’ chronic illness concept, so whilst like all kids she’s always trying to stay up a little later, she’s interested in the concept of being able to do more if she looks after herself well."
– Keri Webster