Frenzy

The phrase ‘feeding frenzy’ is an interesting one. It usually comes up in two contexts: the first is when the tabloid media goes bananas over the latest celebrity scandal; the second involves sharks or piranhas. Just imagine if there was scandal about a celebrity who got eaten by piranhas - there’d be a feeding frenzy over a feeding frenzy...

Our life has included long, difficult, feeding frenzies that have nothing to do with Sun reporters or Great Whites. Feeding frenzies in a Prader-Willi household are a whole different thing.

For some PWS parents, they can be literal. They’re when a child gives in to their uncontrollable hunger and sneaks downstairs in the middle of night, and eats and eats and eats. The discovery of which ends in a frenzy of bolted doors, locked fridges, rage and tears.

For our family, the frenzy part has been more about us, the parents, than it has been about our daughter, the hungry one, who as yet has not discovered the illicit joys of night-time foraging.* (*Dear God, I mis-typed that and it came up with ‘the illicit joys of night-time Farage-ing’, which is possibly the most disturbing thing I’ve ever written).  

From the moment your child is diagnosed with a disorder that is so wrapped up in the issue of hunger and diet and overeating and satiety, you become frenzied about feeding. It’s fear, a fear that you will provide the wrong food, that you’ll fail to foresee temptations, that you’ll give them too much food, or too little, you’ll serve up things that are too fattening, or not fattening enough, that they’re missing out because you’re too strict, or that you’re making it tougher because you’re too soft.

You’re surrounded by it, enveloped by it, obsessed by it. And all the while you know that however much thoughts of food dominate your life (for eminently practical reasons), you’re a mere amateur compared to your PWS child. They really take the biscuit, if you’ll pardon the expression.

Your feeding frenzy isn’t constant, though. Just like the Government escalates and de-escalates terror threat levels from ‘substantial’ to ‘severe’ and back down to ‘chillax’* (*possibly), you learn to live with the idea that you have to supervise your child’s diet carefully and continually. You become so used to it, it becomes second nature, and doesn’t sit at the forefront of your mind all the blummin’ time. 

We’re lucky: our daughter, at the moment, despite being 4 foot 10 and half inches of stubborn, pretty much accepts the food rules. 

We appreciate this isn’t the same for everyone, and we know our frenzy levels may need to be raised to ‘ohmygodohmygodsweetmarymotherofjesusonaunicycle’ at any point.

But frenzies aren’t good for you, believe me. Whatever your circumstances, if there’s any way you can de-frenz, try your best. Food is a big issue. A huge, calorific, mountain of an issue. But it is only part of your life. And like all parts of your life, you will get it wrong sometimes, and other people will get it wrong sometimes, and do you know what? That’s OK. You’ll get by, with a little help, and less frenz.

Video is The Fall - Victoria (from the album The Frenz Experiment, you see). Thought I was going for The Beatles or Joe Cocker, dint'cha?

This post first appeared in the October edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.

List

I stumbled across this list yesterday*. It was created by a young man with Prader-Willi Syndrome who had a New Year’s Wish ‘for people to know what it feels like to have PWS’.

When asked how he could get his wish, he said: “People could do some of the things that I feel every day, just for one day and maybe they would understand.”

It's a real eye-opener.

Here’s his list. If you like - and in the spirit of New Year's Resolutions -  you could pick one or two of the challenges to undertake. Just for a day. See how you cope. And then think about living your life like this. Every day.

1. In the summer, turn up the heat and wear extra clothing or in the winter, wear very little clothing and turn the heat down.

2. Only eat ½ of your meal, breakfast , lunch or dinner and leave the table hungry.

3. Go to an office or school party with all the extra food and goodies before eating lunch and DO NOT EAT ANYTHING! 

4. Put cookies, cupcakes, or other goodies that you like on the counter and be sure to walk by them every time you go in the room but you can NOT eat any!

5. When you are really hungry watch someone else eat something that you LOVE, knowing you cannot have it.

6. Do something out of the ordinary or different in public and look around to see someone stare, laugh or tease you because you are different. 

7. Lock your cabinets or refrigerators and give someone else the key. Tell them to only let you eat when it is meal time or time for a snack. DO NOT eat in between meals. 

8. Restrict your calories to only 1100 calories per day including all meals and snacks. Count all calories including drinks. ONLY eat 1100 calories!

9. Drink only sugar free, diet drinks or water do not drink liquids that contain calories.

10. Never go into the kitchen, pantry or cabinets unsupervised. Only enter the kitchen or dining room if someone else is with you and can be watching what you are doing.

Video is Eels - Guest List

*The list came from an entry by Janis Tull Williams on the Prader-Willi Problem Solving And Solutions Exchange page on Facebook