I long to eat Christmas lunch, to have an ice cream on a hot day, or even just a bite of birthday cake. Sometimes I have to crawl back into my bed from sheer pain after an hour or so of being up. Other times, on a good day, I can work from home, spend time with friends and family, and use the little energy I have trying to do things I love.
But when 4pm rolls around, life has to stop. I have to be home, so I can attach my infusion and inject extra vitamins, such as B12 , to try and support my failing immune system and organs as best I can. Nothing, not even water or supplements, can enter my system other than through this combination of a drip and injections. Once connected, I am then stuck to my infusion for 14 hours β the time it takes for all three litres to enter my body.
Loaded into a backpack, I can carry my infusion with me around the house, and lie it next to me to take the weight off my back. Heavy and cumbersome, the machine pumps sugar, fat and water directly into my veins. Everything I do in my life, from holidays to work, is restricted by the way I have to nourish myself.
I grew up suffering from countless broken and dislocated bones. My injuries never seemed to end. But it was when I hit my teens that my body began to spiral. As well as a failing heart and needing numerous surgeries, I also was now unable to keep food down and was rapidly losing weight. I felt utterly out of control, free-falling into the unknown, terrified of what was to come.
My first feeding tube went in before I had even graduated from university β through my nose, down my throat, and into my stomach.
