Home Artificial Nutrition (HAN) week this year is 1-7 August and way back in May I got in touch with buildings in and around Nottingham asking them to light up green in support 💚 This will help to raise support for PINNT, the charity that supports people like me that need artificial nutrition to survive.
Nottingham Council have agreed to light up the Council House in the Market Square on 1st August to mark the start of HAN week. And Greens Windmill have also said they will take part and light up the windmill. Greens Windmill holds a special place in my heart as my Grandad used to take me, my sister and cousins there as children. I’ve continued the tradition with my kids and God-children and have so many happy memories there.
I also contacted:
▪️Nottingham Castle
▪️Newark Castle
▪️Nottingham University Hospital (NUH) Trust who have the ability to light up QMC and City Hospital
▪️Kings Mill Hospital which is about 13 miles away in Sutton in Ashfield
▪️The Theatre Royal & Concert Hall and Nottingham Playhouse (even though I’m not sure they have the facilities to do it)
Unfortunately Nottingham University have said no which is a shame as they can light up both their Trent Building and Lakeside Arts Building. I really was hoping to get all buildings that can on board, but never mind. I contacted Newark Castle but they’ve said the conservation work they’re having done prevents them being able to light it up at the moment and Nottingham Castle said their diary was already full with a large volume of light up requests.
Kings Mill said they would consider the request but never got back to me. And most disappointingly NUH Trust, which includes QMC hospital where I spend so much time as an inpatient, didn’t even bother to reply to me despite me emailing various people and contacting them on social media. I also never heard back from the theatre and playhouse.
In order to raise awareness of HAN week, and people like me that are living on TPN and other artificial nutrition I liaised with the charity PINNT and their press team to get my story out there. A few weeks ago I was asked to write ‘my story’ in around 800 words which proved difficult. I was still in hospital and over the course of a few days I wrote a bit each day. When I submitted it to PINNT I was over the word count and even though I gave them free reign to cut the story down they ended up keeping most of it. My story, which is ultimately the life I’ve lived over the last 15 years, has been such a rollercoaster of ups and downs and I’ve been through so many surgeries and treatments through that time so it was hard to keep the ‘story’ short. This blog was born out of needing a way to deal with some of the trauma of these events and I find that writing about it helps me to process and deal with things.
PINNT have got the story featured in two local newspapers which I’ve found both exciting and scary. Even though I write this blog I feel like being in a newspaper article is much more exposing as it’s in the public domain and anyone can read it. I know that anyone can read this but somehow it feels completely different. I’ve found myself repeatedly looking at the online articles to see what comments people have written as I do worry that there will always be people that have horrible things to say but so far it’s been really positive. I’ve even had someone contact me as they have a friend who is going through a similar issue with their health and they didn’t know anyone locally who had experienced the same thing. And it’s important to make the general public aware that there are people like me trying to live their lives despite needing HAN.
Here are the links to the articles:
I think it’s so important that we talk about bowel disease and artificial nutrition as the more we do the more we break the taboos. I know that when I talk to people about my illnesses quite often I’m met with the reply “oh me too!” or “my brother/sister/mum/dad/friend suffers with that too”. People are still embarrassed to talk about it because it involves talking about poo and bums and going to the toilet but it’s something that everyone does, even the Queen! Although deep down I wish that I had never been diagnosed with UC 15 years ago I’m doing my best to live life to the fullest and battling each hurdle this horrible disease throws at me. It’s not easy but it has taught me to be grateful for the small moments in life, for the friends and family that have supported me and to always, always look for the silver lining in the storm clouds. I have plenty of challenges facing me in the coming months and years, with surgery on the horizon but remind myself that every scar shows a battle won.
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