Writing a blog a day for 26 days during the Covid-19 lockdown (to raise funds for the Prader-Willi Syndrome Association UK) is more taxing than you might think. My fingertips are vaselined up to prevent keyboard chafing, and I've done my nipples too, but that was just because it felt nice.
So as we reach Day Seven, I've decided to talk about the biggest cannon in the syndrome's artillery: FOOD. Or more specifically, the overwhelming and insatiable appetite that affects people with Prader-Willi, and their consequent obsession with food.
It's both physical (the trigger in their brain which should signal that their stomach is full doesn't work), and mental (imagine being hungry all the time and how much this would dominate your every thought).
Some families have to lock their fridges, kitchen cupboards, and even bins, to prevent their PWS child or adult food seeking and stealing (there have been cases of people eating frozen food when fridges but not freezers were locked). Not every person with PWS has such extreme behaviours, but almost all have a life-changing and challenging relationship with food.
So the current Covid-19 shituation (yes, I have spelled shituation correctly) is particularly effing excruciating for many PWS families. Someone with PWS finds coping with changes to routine difficult at the best of times, so many just cannot understand why the supermarkets have gone all weird, their favourite foods are often not available, and when it comes to shopping for food, their Mum or Dad are no longer preferring the 'little and often' technique, but instead are doing it 'on a bigger scale but less frequently'* (*coincidentally, this last phrase also applies - thanks to my husband's shift patterns and the kids being home all the bleeding time - to our sex life. Oh, God, I seem to have typed that out loud).
Where was I? Oh yes, the food thing. In lockdown this is proving doubly difficult for everyone because normal distraction techniques often involve taking the PWS person away from the home and in particular away from the temptations contained within the kitchen (for us this means going to the library, heading to the cinema, visiting Grandad, or going for a walk, the first three of which we can't do, and the last of which we can only do once a day).
So if you're currently enjoying an 'interesting' relationship with food (aimless fridge foraging I believe is a current 'thing'), just subsitute raging hunger as your motivation to munch instead of merely just boredom, and spare a thought for someone with PWS.
You could also spare a quid or two, if you like.
Song is Spearhead - Food For The Masses
As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page. I can't express my gratitude enough to everyone who has contributed so far. Well, I can't express it now, but I can when social distancing rules are relaxed.
You guys who have given are great. You other guys who haven't given yet could achieve greatness. And OK, I promise not to thrust greatness upon you.