Thursday, 7 May 2020

Day Twelve

There are some things humans yearn for. You know: eternal youth, comfy pants, world peace, a self-replenishing wine glass. That sort of thing.

What I find myself wishing for most often, apart from the wine glass thingy, is a little bit of calm.

Anxiety looms large in our household. Chief Loomer is my daughter. Anxiety is a huge issue with many children and adults who have Prader-Willi Syndrome, and my girl can sometimes be a little fizzing firework of anxiousness.

It’s fuelled by the PWS physical hunger and obsession with food and the inability to deal with emotions. It’s sparked by changes to routine and random - innoculous, and, triggers. 

Patience is needed. You have to learn when to let the anxiety run its course, when to intervene, when to ignore and how to distract. I always do the right thing and never lose my shit, obviously. Well, I say never, but I would like you to see something my daughter wrote on the poster she filled out after a morning of persistent, repetitive, anxious avalanches. On it, she had to describe what she could see hear, touch and smell in her immediate surroundings.

First on the list of sounds was...shouting. Yes, on the family Mindfulness exercise, designed to instigate calm and restore equilibrium, the thing she listed hearing most was me, shouting.

The smells she listed in the next section included wet dog and bonfire smoke (incidentally, if it been last week she could have actually put down barbecued dog hair, as the dog managed to wedge himself under the barbecue for long enough to set himself ever so slightly on fire), but she missed the strongest aroma. The stench of guilt coming from me.

Song is The Housemartins - Anxious

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 and donate anything you can spare - a few pence or a few pounds, it all counts. You can be motivated by altruism or even guilt, I don't mind.

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