There will be times in the day where I think,
“Ah, crap, I haven’t eaten. I really need to eat something”. Truth is, I don’t want to eat. It’s a treatment; part of my routine, a necessity. If I’m working I can just totally forget about eating and blaze straight through.
I have to try and get as many calories in as possible. Some people must think that sounds amazing. You can eat full fat everything. Sometimes I don’t want to eat like that. Imagine Christmas Day, after half a tin of chocolates, followed by turkey and sprouts and potatoes and stuffing. Then having to tackle all that again: the feeling of its actually uncomfortable to eat anything else. Well I feel like even before I start.
I'm a really slow eater. When I’m eating with my housemates, they’ll just blast through dinner, I’ll take at least twice as long. It was the same in primary school when everyone else would wolf down their lunch so they could go out to play.
And I’d be left behind.
Having to take tablets with everything I eat doesn't affect me as much as you would expect. I've never known not taking them. It was something that I just got on with. I would get annoyed with people's reaction when they didn't understand. Even when I tried to explain and they still wouldn’t understand. I’m a very logical thinker; I've always had to understand something before I use it. With all my medication I try and get a decent explanation from the doctor before I take it. Which I think a lot of people don't, they will happily, ignorantly and blindly take something.
My tablets are called Creon and everyone used to think they were crayons. It irritated me that people just didn’t understand. I take about 30 a day, and with every meal it has become second nature. I remember one time sat in front of the dietitian, and my mum just said, “Sometimes I think he just wants to take the Creon more than eat the food”. Taking a tablet, as long as you don't get it stuck, can be less uncomfortable than eating. Your stomach doesn't feel full.
My parents are both food technologists, that in itself means they have a totally different perspective. Food technology is not about cooking, it's the science behind food. You could ask them what an E-number is and they will know the actual chemical make-up. You get some really odd things like that. Growing up with them was interesting. My parents have always been really supportive but in a way that’s not over bearing, which is really good.
Each CF patient has different experiences. There are a lot of things that are the same all the way through; some people have worse lung function, others really struggle with weight. I’ve never really had a problem with my lungs because I’ve always been really active. “Knock on effect” is a phrase the doctors consistently used, weight affects lung function. They want you to have as much body mass as you can. So if you catch an infection you have that extra cushion to fall back on, especially in times where your appetite does just disappear.
There are days where my appetite isn’t there. I just look at food and it doesn't look like something I want to consume. Even when there are people around me saying, "That looks lovely" and, "That smells amazing". I can’t even smell it: I lost my sense of smell due to nasal polyps.
I came to uni and all of a sudden I was completely on my own with food; there was nobody to remind me to eat. This was good and bad at the same time. It meant that I didn't have to fall in with anyone else's eating pattern. But at the same time I am known to forget to eat. It wasn't until I got other people around me involved, that it became easier. Now I tend to eat with other people or watch something on TV, to distract myself, and bring in an element that's not just me and the food. My housemate Zoe has a real enthusiasm for food. On the days where I really can't be bothered to cook, she will cook meals for all of us. I'm happy to pay for the food or do the washing up in return.
If my parents found anything that I liked they would constantly make that for me. It would get to the point where I wouldn't want to eat that anymore because I had it so much. I'd go off it, so even something I had once enjoyed then became a chore. There are still times where it's different and I do fancy something good but still there's other times when I just don't want to deal with it.
At secondary school when you become a bit more independent with food, it would get to lunchtime and I would have to do physiotherapy. I would have to go off to a room to do the physio then have lunch, so my friends had eaten lunch before me. This meant a lot of lonely lunchtimes. What we agreed later on was to bring a friend who would sit whilst I did the physiotherapy and then we could go to lunch together. I’d ask them but they wouldn’t necessarily want to because they would be missing out on what our other friends were up to. That was difficult but I really didn't want to sit on my own in the massive canteen, with everyone older than me. We did get to go straight in and not queue up, but then again, that kind of privilege would also single you out.
I remember going home after the first term of uni and my dad's reaction being, "Oh you look thinner". That was not good, I can't really afford to get any thinner. The first few times going home was to go to the hospital for clinic appointments. So going home became going to the hospital and going to the hospital was all about seeing the dietitian and seeing the dietitian was scary.
I would wear slightly heavier clothes just to eek up the scales; the heaviest pair of trousers with a big belt. When you’re in that hospital environment your weight and appetite is immediately related to your health and what could go wrong. As opposed to at home when its just food. In the hospital the doctor is saying, "look at this graph" and your weight has gone down or not really changed at all. I was always below the 25th centile, basically in the bottom 25% of the population for weight.
They were always threatening me with the NG feeding, which is the tube through your nose. It always used to terrify me back then. My parents didn't want me to do it because it meant giving up, like I had failed to eat enough. It was only more recently that I considered it after moving away from home, where food was all on me and not with my parent's help.
About a year ago I came round to the idea of doing this feeding. The dietitian had shown me a graph of someone’s weight after they had done the NG feeding and it had just flown up. I just thought it could make things a lot easier and take the pressure off me. I’ve never had to spend consecutive nights in hospital before, I’ve been really lucky with my lungs that I haven’t had to go in for IV antibiotic treatment since I was nine.
It worked out that I was moving all my treatment down to the CF Clinic in Bristol, where I live now. I felt more at home and relaxed because I had created the relationship myself, rather than through my parents. The hospital in Bristol is a lot closer to where I live, I can walk there in 10 minutes. Rather than the hours drive between St James Hospital in Leeds and my home in York. So I agreed to be taught how to pass a tube. I stayed in over a couple of days. It was quite frustrating because they teach you how to pass it then you have the feed overnight while they monitor you. But during the day there was nothing to do so I was able to leave. It was a weird couple of days where I was still coming into uni then I'd go home then go and sleep in the hospital. It was oddly pleasant in the hospital. Our house was pretty horrible at that time, really cold. But the hospital was nice and warm, really clean.
I remember coming home after the first night, I got back into the house and all my housemates had been out the night before. There were loads of boxes of fried chicken everywhere that they had bought on the way home. I just walked into the house, and then walked straight back out and went into uni. Then after uni went straight to the hospital. They had a vague idea what was happening, but I didn’t want to explain the ins and outs.
After I had been taught, the tube became a lot less daunting. My feeling towards it became something I could do and add into my routine of other treatments. If I do forget to eat or really don't feel like it, it's OK because I'm getting 1500 calories overnight. That’s like 2 decent meals. I struggle to eat breakfast after I've had it, but I do feel on those days I have a lot more energy. I try to have the feed as many nights as I can and it’s been really beneficial because I’ve put on a bunch of weight. It makes me feel better about my body image, If you look at pictures of me from before I started and then now. You can definitely see I’ve filled out a bit. I think one of the biggest things was giving in and saying, “I'm going to do this.” I'm glad I did. In fact, sometimes I wish I had gone for it a long time ago.
Sometimes I think I have all this stuff with CF to deal with and then at the same time I have to carry on with everything else as well.