I’m exhausted today, having spent the weekend at the Friends for Life conference in Windsor, organised by Children With Diabetes (CWD). It’s sort of like being in an alternative reality where everybody understands what it means to have a diabetic person in the family – or two in our case – and the stresses and strains it puts onto our lives every single day and night.
A reality where you don’t have to explain that diabetes isn’t something you grow out of, or that my kids didn’t develop diabetes because they ate too many sweets, or that just because you once had a diabetic cat it doesn’t mean you understand what we have to put up with. And a reality where all the food has already been carb counted by someone else.
For my two sons Joe and Tom, the weekend involved lots of fun activities, the odd session where they could learn a bit more about their condition, and a Halloween party. For Jacqui and me it involved lectures on the latest science of dealing with diabetes, the odd discussion group, and lots of meeting up with other parents where we talked about diabetes among many other things and – crucially – had a drink or two.
The weekend started with a bang for me, as I had to do half an hour of diabetes-related stand-up comedy for an audience of about 300 adults and children. I wasn’t entirely sure that this was something I could pull off. Stand-up requires a certain amount of shared understanding, because if they don’t get the cultural references which the gags and routines are based on, the chances are that you’ll lose them.
The set I’d worked hard on preparing – full of references to blood glucose testing, hypos, and HbA1C results – would not have worked anywhere else. Plus it had to keep the kids on board as well as the adults. As it happens, they got it. The fact that they laughed at things that no other audience would is a testament to just what an unusual experience it is to be surrounded by other people who actually understand what it’s like to live with diabetes.
But moving and exhilarating thought this all was, diabetes never sleeps. Both nights we were there, our hotel room was filled with the sound of Joe’s and Tom’s pump alarms going off, their tinny electronic sirens ringing out so regularly that it almost felt like a miniature 1980s acid house party. The combination of late nights and unusual activity patterns sent both of them on a nocturnal rollercoaster ride of high and low blood sugars.
Now it’s back to the everyday reality of getting on with the hard graft of managing our sons’ condition, surrounded by people who don’t get it and who tend to glaze over if you ever try to explain what it’s really like.