#thisisSarah

Despite being predominantly housebound and having severe limitations on what I can do day-to-day, I still manage to enjoy life. When my health allows, I find pleasure in activities such as reading, cross stitching, taking photos in the garden, doing church via Zoom and connecting with friends.
 
My major health problems began in 2002 when I was struck down with M.E. Quite a few other chronic conditions have subsequently been added to the list. This includes being diagnosed in 2011 with gastroparesis and gut dysmotility, after years of suffering with gastro symptoms.
 
I initially lived solely on oral nutritional sip feed, but over an 8-year period it became increasingly clear that this was inadequate to sustain me. Since 2019 my daily menu has consisted of a combination of enteral nutrition (initially via NJ, but now PEG-J) and sip feed. 
 
I joined PINNT in 2014 after I’d heard and read about the great things they were doing to help and support all those living on home artificial nutrition (HAN). It didn’t take long to come to the conclusion that I wanted to give back to this charity as a sign of my appreciation.
 
It has taken quite some time to work out how to do this, due to the huge challenges of living with severe M.E. A feature of the illness is that any exertion beyond my established limits has the potential to result in a serious relapse. Taking on any new activity is therefore something that must be approached very carefully. But I have slowly discovered ways of supporting PINNT that are within my very limited capability. It’s still very hard on my health, but I find it such a positive experience overall.
 
Until recently my contributions have mainly involved educating friends and family about life on HAN, via online means and the PINNT newsletter. Responses have been very positive. However, this year, as a newly appointed PINNT Ambassador, I’m helping to relaunch the PINNT Oxford group. I’m looking forward to increasing links with other HAN members and engaging with local healthcare professionals through this venture. It’s been an encouraging start, so I’m excited to see where these connections lead.
 
I’m so pleased that I’ve found ways to support PINNT. And I know that every small contribution made helps towards the bigger picture and the overall aims that PINNT has – to support, educate, inform and advocate for all those on HAN.