Mealtimes and Milestones

by Barter, Constance

  One of the nurses came over and said that they were pleased that I had completed breakfast, and that church had motivated me, but they were concerned about how the rest of the day would turn out, because to be up to date before church I actually only needed to eat breakfast because we would leave at 10 a.m.

  She also wanted to talk to me about tomorrow’s trip to Willen Lake, one of the activity trips that take place in the summer holidays. You can do canoeing, low ropes, high ropes,12 orienteering, etc. I would be restricted anyway on some of the activities because of my tube. She also reminded me that the tube would only come out once I’d been completely up to date for three whole days – they didn’t want to take it out and then have to put it back in because it’s quite an intrusive procedure.

  She said that she would allow me to go to church though.

  I did have mixed feelings about going to church with my tube because I was afraid people would stare at me. On one side I am very ashamed of having a tube because it shows that I have given up the fight, but I’m also proud of it because it shows me that I am doing well at being the ‘best anorexic’. Although it was embarrassing I did wonder what people were thinking when they saw me . . . and yes, people did stare.

  When we got back for snacks, I felt an enormous amount of pressure because I wanted to try to prove to the staff that I did deserve to go to church. It was very hard as usual, but I did manage it.

  When I got to lunch, though, I just broke down. I couldn’t keep going. I had eaten breakfast and snacks and I just couldn’t face lunch. At first I even found it hard to look at the plate, but slowly I managed to see that eating it orally would be much less painful than being fed through the tube, and eventually made a start. I was shocked and annoyed, though, that I didn’t receive any support from the nurse. I don’t know if it was on purpose, but I just found it strange, because she could see that I was crying and obviously stressed. When I asked for a tissue the student nurse brought them over. She put the box next to me and I took one, but then the nurse said, ‘No, take the box away.’ I got the impression that either she was seeing what I could do on my own or she was cross with me because she had allowed me to go to church and now I was struggling to eat lunch.

  I ate most of it, but I couldn’t get on to my pudding, even though I knew that meant I’d have to have a feed by tube and I didn’t want it to happen.

  I tried the wrapping method again at snacks, but I was concerned because I couldn’t see the actual amount of calories on the packet. It has become an obsession. If I don’t know I become more scared. What if I put something high in calories in my body which I don’t deserve?

  I talked with one of the nurses between snacks and tea. I said that I found going to church really helpful because it got me through breakfast, but afterwards I felt a huge burden of pressure to go on eating to prove that I’d deserved to go, but also pressure from my anorexia not to eat. I really want to get better, I know I do, but I can’t. I just can’t. There’s no hope for me. It is pointless trying because it is just going to be another thing on the long list of things that I am going to fail at. It doesn’t make sense when people say differently.

  I was worried about tea because I just kept reflecting on what I had eaten, and it seemed so daunting that yet again I was going to have to force more food inside me. It’s fuel, but also my poison. The nurse reassured me that I can only do my best, but I didn’t want to let that train of thought make me not eat anything, because I know that it’s just going to be fed to me through a tube anyway.

  It was sandwiches for tea. It was as hard as I expected. I kept adding up all the food in my stomach, all that repulsive, toxic, sickly stuff that you have to put inside you. I didn’t want my pudding given to me. I couldn’t even look at the food because it terrified me so much. I could see what I had to do. It’s a natural process, but it was all too much. Just the one sandwich seemed like a mountain on a plate. I have this very strong image in my head which has been with me for a very long time and therefore is deeply planted in my head. It’s of a flat abdomen – it’s already full of your guts and stomach, so eating just expands it, and that’s exactly why I don’t want to eat.

  A letter from one of my school friends

  Before evening snacks I got talking to one of the other young people which I really enjoyed and we were able to share our experiences. She finds it hard to go into the dining room, so I offered to hold her hand, and I sat with her and offered her support. I enjoyed the evening because we could relate to each other and exchange support. It upsets me that such a lovely girl is struggling with this illness. It’s a stupid, destroying illness which no one should have to go through, but this is what I deserve, so I just have to live with that.

  Monday 13 August

  It was weighing today. It’s always so hard, but today I was quietly confident that I had lost weight. Even though the hospital didn’t want that, I want to feel like my efforts of starvation have paid off. And they had, so I finally felt proud of myself, something that I haven’t felt in a long time. I know in the back of my mind that I can’t be proud of this, but I am, and I can’t help this.

  The first activity at Willen Lake was ‘Katakanu’. It’s a six-person canoe. It was really good fun, but it brought back feelings about exercise, and how I’m not allowed to do much now. I found it really frustrating, because it made me just want to go running and let all my troubles fall away, but I managed to put these thoughts out of my mind and I was just thankful to be out of the hospital for a day.

  We sat down on the grass to have lunch. I hadn’t been to Willen Lake before, and this was my first meal out in public. One nurse positioned herself so people couldn’t see my tube, which was helpful. I couldn’t manage it all, I couldn’t find the motivation. Technically, because I didn’t eat everything and wasn’t up to date, I wasn’t allowed to go on the low ropes, but the decision was made to let me go anyway. Although I was grateful, it made me wonder – does it mean I can get away with other things as well?

  The low ropes course reminded me a bit of my struggle with anorexia. The whole course was hard, but some bits were so hard that I needed help and support from other people to be able to cross the bridge and continue on.

  We had snacks on the bus back, but I completely shut down. I had eaten enough to be able to participate and now I couldn’t do any more. I feel bad for doing this, though, because I should still keep my motivation up, and not give up like that. I shut down as well at tea. The nurses had warned me about becoming reliant on the tube, and now it was coming true. I figured that I was going to be fed anyway, so what was the point in eating and facing all the emotions that come with it? Eating is only there to keep you alive, and I don’t want to be alive.

  Tuesday 14 August

  We were going to the cinema today, and I felt so much pressure to complete my lunch. Was it really going to be worth it? Is it worth all the anxieties for a few hours watching a film? I didn’t know, but I had to at least give myself the opportunity. I cried and cried the whole way through lunch. They were tears of frustration, fear, sorrow and pain.

  We watched Evan Almighty. I had loads of emotions again about going out in public. What would people be thinking about my tube? Would they think that I was dying? It didn’t look that dramatic, but that’s what I wanted people to think, because that’s what I want to happen.

  We had to have afternoon snacks later than usual; I only managed a few dried apricots. I had decided before that I would only eat that much, and when I do this I absolutely can’t eat any more because otherwise I will be punished by the voice, and I’d rather not eat anything than be bad and get punished.

  After tea my key worker asked me whether I would rather try and make up my intake orally at eight o’clock or just get it tubed now. What a decision. Part of me enjoyed the tube, part of me hated the tube, part of me knew that I couldn’t and wouldn’t make it up at eight o’clock, but part of me wanted to try. I eventually decided that I would rather that it was j
ust done now, because then it’s over and done with. So that’s what happened.

  TEXT MESSAGE:

  Everyone here in the village is thinking of you and is wishing you well. You don’t realize what a beautiful person you are – just as you are. Of every young person I know, YOU are the one who can go out into the world, take it by the scruff of the neck, and do whatever you want to do and succeed. When you get yourself fit and strong again you can achieve anything you want. Hope you are back home very soon. xxx

  Wednesday 15 August

  I had a really positive attitude today. I don’t know what changed, but it was just there. I was going to eat everything and get the tube out. It was going really well until tea, but then the plate of food that came out in front of me was huge, it was too much.

  The voice kept talking to me:

  ‘You can’t do it. If you do eat it you know that I will punish you.’

  I cried and cried all through it, and when pudding came it just made it all worse because I had just climbed one mountain and now I would have to climb another one.

  I finished, but I just had to get out of the dining room, and I locked myself in the toilet again. I didn’t know what to do, I was being backed into a corner and suffocated by my feelings, I just wanted to scream, I was breathing quick, deep breaths and my heart was pounding, it felt like it was going to jump right out of my chest. I began to scratch at an area on my wrist until it was all red. I’ve never done anything like that before, but I was too lost and confused and I didn’t know how else to help myself or let others help me. Punishment is what I need.

  I spoke to my case manager13 because she could see that I had been crying. She wondered what staff could do to help me after meals. I don’t know though, I don’t know anything. I know that I like to be alone, which is true. It gives me a chance to organize myself and drift away. She said that it often wasn’t healthy to be on your own because you can often just get deeper into your negative thoughts. Especially when I feel so depressed and think that I don’t deserve anything, I’m basically trying to fight a losing battle because my mind is just so one-sided. So we agreed that I could have my time on my own, but then I should go and discuss my thoughts with a staff member.

  I carried on the evening feeling captured and bewildered by my thoughts and kept having small outbursts of tears. I’m due for my first review tomorrow. I keep wondering how it will go. I’m a bit scared – what are they going to say?

  Thursday 16 August

  All my feelings came up after lunch, so I went out with one of the therapeutic care workers. We went out of the dining room and sat on the stairs. My feelings about killing myself were back and I couldn’t control them. They prowled inside my head, and captured any last bit of hope that I had. She was going to talk to someone higher up, to discuss what to do because she said I needed more support in dealing with my feelings. I didn’t want her to tell anyone, though. I don’t want to get help with my feelings, I don’t want them to go away. I want them to stay and come true.

  I also had my first review today. My parents and out-patient team came in and discussed my progress, and the best way forward for me.14 They told me that they had talked about my tube, and making sure that there is good communication with my out-patient team. I asked how long I was going to be here. They said that they weren’t sure, but I was ill enough to be in hospital at the moment, and I had another review in six weeks, so it was going to be at least till October.

  I had family therapy15 afterwards, which I think was really beneficial. We all sat there in silence at first, I didn’t want to say what was bothering me, but I couldn’t hold it in and I knew it had to be said.

  ‘I’m sorry to my parents because every time I see them I feel angry, and I don’t know what I can do to stop it, because I shouldn’t feel it towards them, but it just comes. I know that it is partly because you are quite “lovey-dovey” and I just don’t appreciate it. I know I should, but I can’t accept it. Like on Saturday for example, I think we exchanged four hugs and kisses. This just wound me up because I’m so self-conscious about my body and I don’t appreciate more physical things than necessary, and I would be more grateful for a quick good-bye. I want to prove my self-sufficiency and not to be oppressed by my parents.’

  We then explored why I can’t accept affection and talked about how sometimes we all need people to fall on in troubling times. Also, why I can’t express my anger, and why I think that it is such a great sin. I think it’s probably to do with the same connection that I have with ‘thin = happiness’ so that for me ‘anger = bad’. I suppose I need to somehow change this thought process, but it seems so logical to me.

  Friday 17 August

  Today started badly after I was told that I was back on observation for an hour after each meal, and after snacks as well if necessary.16 I hate it. I don’t want staff to be with me. I don’t want them coming to the toilet with me to make sure I don’t make myself sick, or do something even worse. I was so angry and upset that I couldn’t face participating in the morning activity.

  ‘See, even THEY are punishing you now. They are doing this to you because you are talking to them.’

  It was true; I am now enraged by myself because if I hadn’t shared any of my feelings then I wouldn’t be in this situation. See, there’s the proof that sharing negative feelings does mean that you get punished. I was already being crushed by my thoughts, and now the staff were crushing me too.

  My coping method is starving myself, so for this reason my motivation to eat was totally cut off, and I didn’t manage any snacks in the morning or afternoon, and had no fluids all day. For me, eating food is just another thing to worry about, another thing to bombard my head with.

  In a key session17 I had to go through magazines and cut out words or pictures which I felt related to me, or the way I feel, and then arrange them on a poster. Things I cut out included: ‘weight-loss’, ‘size 0’, ‘size 8’, ‘In desperate need of help’, and ‘Out of control’. I found this really effective because without saying anything I was able to communicate, which I often find hard because I can’t put my feelings into words.

  After tea, the amount of Enlive I was due to have was so much that a plan was made to give it to me in two feeds. I was going to be given the first part now and then attempt to eat a snack, and then the night staff would feed me the second part – which would be even more if I didn’t manage to eat the snack.

  Even after the first 750 ml I felt really sick; it doesn’t help that it is done quite quickly. After the second feed I felt so unbelievably ill. I explained to the member of staff that I felt like I was going to be sick, but she offered no support or comfort. As soon as I was off observation I went upstairs to bed. I reached the toilets and just threw up. One of the young people heard, and I asked her to go down and get a member of staff. They came up, but didn’t do much. I tried to explain that it wasn’t forced, but she didn’t seem convinced. I’m going to sleep crying because my frustration is so huge, but I’m not going to go and get a staff member, I don’t trust them and it seems pointless anyway.

  Wednesday 22 August

  I had therapy today.18 We mainly talked about my future because I was worried about it. One thing that I think triggered my worry was that the GCSE results are coming out tomorrow, and this for me brought out a lot of feelings around education. Would this illness ruin my chances of gaining all ten of my GCSEs next year? Would my school ask me to drop some? If they did, how would I feel? To be honest, I would be absolutely devastated. I feel so embarrassed that people don’t think that I can cope. I would be letting myself and my family down. I have actually been thinking about my GCSEs since I was 11, and now they are just around the corner, but I am stuck in a hospital battling a mental illness and really struggling to see the point of living.

  Thursday 23 August

  The GCSE results came out today, and it was really strange because they weren’t even my results but I was nervous. I just kept thinking about wha
t I will get, and how anorexia will affect my results next year.

  The two young people in the group who had taken GCSEs this year got amazing results. One got 10 A*s, and the other 5 A*s and 5 As. I guess I feel jealous, because I’ll never be able to gain such great grades. What I did find interesting, though, was that the young person who got 10 A*s said that she had worked and worked for those exams, to get what she thought would be a really solid start in life, but in actual fact it hardly meant anything to her, because now she realized how much she had sacrificed her health for them. She forgot about her body and neglected it, and the things that mattered to her now were the small ones.

  This was really mind-opening for me. I need to realize that life isn’t measured by exam results – and perhaps I should stop thinking so far ahead, and just set small goals, like eating a meal, or not crying more than twice a day: just small things, but things that will hopefully give me a larger sense of achievement.

  In my core team meeting it was agreed that my uncle and aunt could visit this weekend, which is a bank holiday. Also, the plan for how my tube is managed was changed. Up to now I’ve been getting ten minutes to make up the calories in Enlive after missing a meal or snacks; from now on I will have the chance to make up the missed calories in food at eight o’clock every evening. If I don’t manage it then, it will be fed through the tube the next morning. The idea is to try to ‘wean’ me off the tube.

  Friday 24 August

  The new plan for my tube came into practice today. I needed to eat two pieces of toast and a snack to get up to date. I just couldn’t do it, though.

  ‘Why do you want to come off it? . . . It is symbolizing success . . . you are being a really good anorexic, and I am really proud of you for that.’

  So I went to bed knowing I would be fed first thing in the morning.

  Saturday 25 August