January 2019

"And so we start at the beginning of another year.  I am in a frantically bad space.  My mood is constantly irritable and the list of things that I hate is endless.  But most of all I hate and loathe PWS.  It disgusts me, it angers me..."

I started that blog at the beginning of 2019.  I didn't complete it and I didn't come back to blogging until the end of this year.  It's hard to pick up from where I left off, but I recognise the feelings which have come and gone all year and will remain for the rest of my life.   This year was no worse than the one before it, or the other 36 years living alongside Prader-Willi syndrome except that I had another significant birthday and I have finally retired from working for the International PWS Organisation.

I never finished this blog and now it's nearing the end of 2020 possibly the worst year in this century, at least so far.  Being in a bad space was to become the norm for 2019 and the realisation that I had to free myself from some of the bondage that was pressing me under resulted in my retirement from IPWSO in November of 2019.  IPWSO had become my life, just as the New Zealand PWS Association had been.  But this time, it was so much easier to let go; the timing was exactly right.  My enthusiasm had waned and continued to do so, my empathy was sadly lacking and although I knew I was the perfect person for distressed parents to contact, it was becoming difficult to drum up the necessary energy to take on yet another burden with unsolvable problems.  So the time was right.  The run-up to Christmas was so much easier and although it seemed as though I was no longer important or needed, those feelings lasted just a few days before the joy of freedom to do what I pleased, to sleep in, to attend no more early morning or late night conference calls, no more Minutes, no more answering questions, sending out requests for donations (really hated that part), and no more being obliged to anyone.

It's a year later and although 2020 has been a shit year for the world, it has allowed some breathing space, some quiet times with Francie and some thought for re-direction.  As it happens, during 2020 I took up sketching and water-colouring and continued, when possible, with pottery.  At least NZ managed to get through the Covid attack in a better state than most of the world.