Humans of ME/CFS

I used to be an active mum; running in the park, playing squash whilst my daughter played volleyball, playing cricket on the beach, riding my hardtail mountain bike off road at Thetford Forest, chasing my husband round Go-Ape’s tree top assault course.
I loved baking cakes, kneading bread, trying out new recipes by The Hairy Bikers, Rick Stein, Carluccio, Masterchef Australia.

I used to go on long walks, along the sandy beaches of England, climbing mountains in Wales, exploring footpaths in Scotland. I was looking forward to exploring abroad. Vineyards in Italy, Temples in China and Japan, landscapes in Vietnam, Australia and Russia. Capturing it all on my camera.
I was a professional photographer; following brides through their day whilst my husband followed the groom, chasing kids around a park for family photoshoots.
Now I’m stuck in a wheelchair on days out, sat on a sofa watching travel shows, having caregivers cook my kids their evening meals, do the laundry, clean my house. That’s on an average day. On a bad day, I’m lying in bed hoping the walk to the toilet next door won’t be too painful, that my hips won’t actually disintegrate, like it feels they will. That my numb feet will hold my weight.
My old camera weighs too much to use and, even with a lighter camera, I’m reduced to half an hour at a time. I loved my photography. My husband and I had to close our business. I had to turn away the work that I really wanted to do.
Now I make jewelry, on a good day. I read crafts magazines on average days and sob into my pillow on bad days.
If I was cured tomorrow, I’d take my kids to the park and play tennis, start having my dinner parties again, pick up my camera again. I’d tour the world and capture the beauty this world holds for those who can’t travel. I’d make bread, chocolate fudge cake and chocolate ganache.