Day 1 - Reach out to others - Angeline's story

I live with my partner, Remco, and our cat, Polly and I've been fed by home artificial nutrition (HAN) for twenty years - the first nineteen of them on enteral feeding. For the last year I have been fed via parenteral nutrition (PN). I've had severe, aggressive Crohn's disease since I was a kid, so I lost a lot of my small intestine to surgery, resulting in Short Bowel Syndrome and Intestinal Failure.

Remco and I are indie authors with a collection of short fantasy fiction, The Red Man and Others, due out on Kindle this August. In the past I've been a freelance film and theatre critic, and written about folklore, pop culture and disability in places like The Toast (the-toast.net), Fortean Times (forteantimes.com) and Culture Northern Ireland (culturenorthernireland.org).

I was surprised by how much confidence it gave me to learn to do my own PN infusions, so in the past year I've been trying to learn new hobbies and skills. So far, I've experimented with learning crocheting, and playing online games such as Magic: The Gathering and Dungeons and Dragons. I also do a lot of photography and I'm really interested in how participating in the arts can improve mental health.

Whenever we've taken holidays in the past we've always stayed with relatives in the UK and the Netherlands, and it was easy enough to have enteral feed and giving sets delivered to their homes, but in August we'll be travelling for the first time since I started HPN and we're doing something different. We're going to the World Science Fiction Convention, which is in Dublin this year (conveniently, so is my PN provider), sharing an Airbnb with friends. Our friends have kindly agreed to give up the fridge so we can use it solely for PN, so we're going to bring an electric cool box down for basics, and otherwise eat out a lot!

My best advice for anyone out there living with HAN is to get in contact with people who are thriving on it already, because it's a lot less scary if you can see how much potential your life has because of HAN, not despite it. HAN is a very hidden thing; a lot of people have never heard of it before they need it, and you don't necessarily notice us in the community, living our lives. But we're out here and the internet is fantastic for bringing us together.

HAN Week