Monday, 25 January 2016

Prader-Willi.... it's not all about eating!

It's so much more than eating.

It's impossible to imagine the feeling towards food that a person with Prader-Willi Syndrome experiences. 
But it's a very real thing. It's more than just hunger. It's a feeling that takes over the whole mind. Add the extra complications of stress, anxiety and uncertainty around the next meal and that's when you're getting close to imagining that feeling.


The food obsession with PWS is so much more than eating. But as with all symptoms in Prader-Willi Syndrome this can be mild, severe or somewhere is the middle of the spectrum. 

It's a relationship with food. It seems to be a consistently spinning wheel in the minds of someone with PWS where food is a consistent thought.
The Lodger is becoming more and more obsessed with food everyday. But not in the way you'd think or we expected.
His obsessions are far beyond his daily eating schedule. 

A lot of his play now resolves around food. He makes tea and apples (a classic combination) for us and any visitors we may have. He spends ages taking the orders, goes off, forgets, and returns an hour later with cold tea and brown apples. 
All imaginative obviously but still a very common theme of his daily play. The Lodger seems content as he cooks his meals, works hard in his kitchen and so far this is a positive distraction to actual food. Although he is a terrible waiter.
Whenever he meets new people he offers them tea, maybe that's Prader Willi or maybe it's just being Irish.

The Lodger also sees animals from the point of view of food. On a Christmas visit to meet Santa's reindeer the Lodger pottered off and returned with a single piece of straw to feed the reindeer. This is a common theme when we take a trip to the zoo or animal farm. This and the questions around the welfare of the animals. He's like a mini animal welfare officer. Have the animals had their breakfast? What did they have? Will they have a snack? What will they have? Usually hay in his opinion. All animals eat hay. Even lions. 
The invisible pigs and cows we have living with us as well as Sasha the inflatable horse are all fed hay daily by the Lodger. Invisible hay but the animals are still alive so alls good so far.


Another bizarre element of the lodgers food thoughts is his concern for other people having enough to eat. Often if I get home late from work his first conversation is telling me where my dinner is. He's generally happy enough to tell me he's had his.
He gets upset or angry if you don't have a snack when he's having his. This may seem strange but then again he doesn't know we don't all have PWS. He doesn't know we don't all feel like he does all the time. And for now that's fine.

And then there's bananas, the yellow cocaine of the Lodgers world. The excitement generated by a bendy banana is beyond words, and although we try so hard to see food as fuel the joy on his face as the sight of a banana is something you just have to love.

The Lodger enjoys his food and carefully and methodically eats his porridge each morning occasionally over-scrapping the bowl to ensure he hasn't missed anything but generally take his time, removes his bib, hands up ready to go for the important "play" of the morning. 
Most other meals end with him handing back the empty plate and waiting for the praise at having finished his meal. And then there's the days he just decides he doesn't like chicken anymore and hands it back. Perhaps he's full or just not in the mood for chicken on a Tuesday, either way it's a nice reminder that he doesn't eat everything always.

The real food challenges appear if the Lodger visits somewhere he hasn't been before. The anxiety is greater, as are the repetitive questioning to ensure that there is food for him, his parents and the pigs. This again displays a feeling that we will never fully understand.

So it turns out the lodger is not just a consistently hungry monster. Who knew!

Prader-Willi Syndrome does include an obsession with food but not always an obsession with eating it. So long as everyone is fed, the Lodger is happy. Long may it continue.