Day 7 - This wasn’t meant to happen!

This relates to two things in my life: being on parenteral nutrition and volunteering for PINNT.

This relates to two things in my life: being on parenteral nutrition and volunteering for PINNT.
My first ‘it wasn’t meant to happen’ experience: I knew from when I was a young child that something wasn’t right; I always had a bad tummy, then as a teenager things grew progressively worse. One hospital admission led to another and to cut a very long story short I was the first person in the UK to be diagnosed with visceral myopathy/pseudo-obstruction. Two things happened because of my diagnosis. (1) I knew what was wrong and it wasn’t my fault. (2) My biopsy was shared with a large paediatric centre which helped other children and families receive a diagnosis. Unless you’ve ever waited to be diagnosed you will never know how much this means. Being severely malnourished I started parenteral nutrition and wondered what the future held. I married an amazing man called Lee, who accepted me ‘in sickness and in health’, and we’ve been plodding along nicely for 36 years together.
My second ‘it wasn’t meant to happen’ experience: I accidentally attended a clinic appointment on the wrong week one Thursday afternoon some 34 years ago and I walked into a meeting which was being held in the waiting room. I sat and nodded and agreed - it seemed rude not to and whatever they were planning sounded like a good idea. Low and behold I left that day as the secretary of PINNT. Note to self – pay attention during any meeting!
It was the start of something exciting. Being on parenteral nutrition meant I’d been medically retired from work; things were very different then. My head was going ‘full steam ahead’ but my body was saying ‘wow, slow down’. I needed to do something while I made the necessary adjustments to my life and recovered from major surgery – PINNT came along at the right time. I had people to talk to about my own PN, what to expect etc, and we found others who had questions too. Together we muddled through and did our bit when we were able, very much like it is today. I’ve never been one to count surgeries or hospital stays, I’ve focused on counting the things I’ve achieved thanks to PN. Let me say here and now, it’s not all been easy, at times it’s reduced me to tears and the number of times I’ve had to cancel plans because of illness - I just can’t bear making a fuss about it. Through PINNT I’ve both helped others and learnt so much along the way. I’ve been inspired by fellow people on artificial feeding and made true friends on the journey. I’m thankful to the nurse who became my saviour one cold day in London all those years ago, who arranged for my transfer to a specialist hospital so I could commence PN; without her I know I wouldn’t have made it.
Thanks to PN I’ve had some amazing times so far, even though I live with a rare disease and specialised treatment.  I don’t believe in a ‘bucket list’ – I have a ‘living list’ and there are still lots of things to do.



HAN Week