Invisible illness is part of the package in our house, where Charcot Marie Tooth Disease, Ehlers-Danlos Syndrome as well as the lovely symptoms of dysautinomia are part of life for us on a daily basis. It’s just how things are, it’s part of our back story.
So this one morning it’s sports day, my son gets up with pain in his shoulder and knee. We work really hard to get him ready for school. At points he can’t bear weight on his leg but by the time we leave (on time I would like to add), he can walk, slowly. I think that it is probably a good idea to deliver him to the school nurse for a hefty dose of pain relief and TLC. My daughter is starting to struggle with fatigue as its getting nearer to the end of the week but it is one of her planned half days so she only has to make it through till lunch time.