When you have Ehlers-Danlos Syndrome (especially as a child), the rough rule is that it takes about twice as much effort/energy to do the everyday ‘stuff’ that a ‘normal’ person/child of the same age would use. So when it’s coming to the end of your first half-term in full time school and everyone else in your class is drooping, Giles is falling out the door at the end of the day barely able to speak – especially when it’s “Walk to School Week” and your Reception class has been taken to the park for the afternoon. This incidentally, is the most fantastic physio for EDS – it’s just so very, very tiring…
So Carbs are a good thing today – one thing that Giles is incredibly good at is eating what his body needs to keep going. Once you get older and think you know better this process becomes harder, but he’s pretty in-tune with the reflux, how tired he is and all good stuff like that. We’ve had the mother and father of all battles getting out the door for school over the last couple of days. The avoidance tactics mastered last Friday are being honed on a daily basis which have resulted in me carrying a writhing boy out to the car both mornings (I was wondering why my back hurt…).
So Mr Tesco – what did you bring?? Something that changed the whole of this morning
mostly for the better?
So not only did I have to repack the lunch bag to accommodate the Cheetahs, the Cheetahs had to have their own box of Cheetah Cereal too. Apparently they ate it up with one big gulp at the table at lunchtime – and there are actually some missing from the box that he’s brought home. Really.
The Cheetahs have spent the rest of the day asleep in the lunch-bag which I think is ideally where their keeper would like to be. I get the results of his blood tests for anaemia tomorrow and would dearly love to be feeding him portions of bolognase sauce and other iron packed yumminesses that he would devour with glee. However, if it’s Cheetah Cereal, crackers, plain pasta and brioche that keep him going and stop him feeling sick, I’ll go with that for a couple of days. I’ll just have to remember not to panic when I see what looks like another nosebleed about to occur at the dining table – tomato ketchup travels to very strange places with small boys.