Day Seven

As the Great Discombobulation of 2020™ continues its relentless progress, my erudite and philosophical* marathon musings (*brainfart blogs) continue apace.

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.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

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.

Eatiquette

This week is PWSA UK Awareness Week. The Prader-Willi Syndrome Association UK want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families, friends, and carers.

Eatiquette

It’s Awareness Week and I’ve been trying to share some knowledge about Prader-Willi Syndrome. The basics - for the vast majority of people with the condition - begin and end with food. 

So I’ve come up with some etiquette advice about food. I'm calling it eatiquette.* 
Here it is...

• Keep food out of sight: Don’t snack in front of people with PWS unless you know it’s their snack time, too. If you’re having a party, maybe the food could be kept in the kitchen, behind a closed door, rather than out on the table from the start. Never leave the PWS person alone with food. If it’s your responsibility to supervise them, watch them closely; they can be unexpectedly sneaky. If it’s not your responsibility, give the minder peace of mind by doing something really simple: move the bloody food.

• Keep food out of mind: Don’t talk about that lovely curry you had last night, what you had for breakfast or how you could ‘murder some chips’. You’re not ‘famished’, you’re just a bit peckish. People with PWS are obsessed with food because they ARE properly,  physically, constantly hungry. If they bring the subject up, answer any of their questions, and try to move the conversation on to something else.

• Communicate: Ask parents or carers in advance about the person's meal times, menus, and portions.

• Be considerate: You wouldn’t open a beer under the nose of an alcoholic. You wouldn’t plonk a bowl of peanuts down on the table in front of someone with a nut allergy. A whispered “Is she allowed this?” when brandishing a plate with forbidden food does not count as being considerate. Check with mum or dad first, out of earshot of the person with PWS (and be aware that their earshot can put a long distance sniper to shame).

• Think of alternatives: If you’ve got tortillas and dips, get a low fat huomous and some cucumber sticks. If you’re making a birthday cake, have a low calorie Weight Watchers’ cake slice on the side. There are such things as no-sugar jelly and light ice cream. Really. Think ahead. Ask.

• Be on time: If you’re having a meal with a PWS family, don’t be late. Or if you are, send a message as soon as you know. And be prepared to grovel when you get there. Trust me, it really is just easier not to be late.

• Do NOT say: “Oh, one little piece of cake won’t hurt,” “They’re not even overweight,” “I don’t see what the problem is,” “They’ll grow out of it,” “They’ve only got Prader-Willi a little bit, haven’t they?”. (This last one, in particular, might result in me giving you a “little bit” of a slap).

I don’t want to be dictatorial about it. (Yes, I know that sounds hypocritical when I’ve finished that list with a threat of violence). I appreciate it’s hard for someone outside the PWS family to understand. But being thoughtful or thoughtless when it comes to food can be the difference between a day being utterly joyful or utterly awful.

The simplest and the best thing you can do is to say this: “Tell me what I can do to make it easier.” 

And then I’ll hug you.

Song is Spearhead - Food For The Masses
*This blog post was originally entitled Foodiquette, until my friend Hannah pointed out that it should be Eatiquette. I bow to her greater punnage.