The cords by which we are tied

You know when you're feeling a little under the weather and can't even face a plate of food that's sat right in front of you? It just requires too much effort to eat it and digest it that you just push it away and even the few mouthfuls you do force down make you nauseous.

This is how I feel permanently. I can't get enough oxygen into me to perform all the tasks the body needs it for, and the things that do work go slower than normal.

Anyone who has had the misfortune of having to see me try and eat things over the last year or so has seen how difficult it is for me.

That, allied to the repeated infections that my body was having to fight off led to the weight loss that Bundo mentioned in her post. I was dangerously underweight - at one point I was 41kg, which is about 6 and a half stone.

So drastic measures needed to be taken. At first I had a Nasogastric (NG) tube fitted to give me liquid food to build me up but it is a short term measure and mine was likely to be a perennial problem. I then had a tube inserted into my stomach that can stay in for two years and I can use a pump to push liquid food into my stomach overnight.

The entry site is just above my bellybutton and is essentially an umbilical cord for grown ups. I have a litre of very high calorie food that I pump in overnight and have shakes that I can syringe in to the tube during the day. I eat meals as well, just not as much as I used to, but the night-time feeding is what has helped the most. I've put on 10kg since we started that and my thighs are now broader than my knees, which has got to be a good thing. We shall find out shortly if that's going to be an adequate weight for the transplant team

My new umbilical cord binds me to the pump though, which is why I put it on overnight, when I'm just lying in bed anyway. It interferes less with my normal day. The feed also leaves you feeling quite bloated so it's better to have that through the night than during the day where it might put you off your actual food.

The really alarming thing is how quickly you get used to things like this. I've had experience of this before with the Hickman lines I've had in my chest for chemo/drug administration but it still surprises me how quickly it becomes the most normal thing in the world.

That's not to say I don't have mishaps - there is very little I can do to explain just how sore it is when I accidentally kneel on the tube and it tugs at my abdomen. Doing this yesterday twisted the end piece off it so I have a lovely nurse stopping over shortly with a repair kit.

So I get fed out a bottle, my umbilical cord is my friend, I sleep all the time and basically all my needs are tended to by my family. Essentially this illness has led to a regression back to baby status for me. I don't just shite myself though, let's be clear on that.