I’m adding a content warning to this post. There’s no mention of my weight or numbers but I do touch on some ED behaviours at times and go into detail about the treatment programme.
Last week, I was a full time senior nurse.
This week I am a full time anorexic. But who am I kidding. If you have anorexia, it is always full time. You can’t escape it, even when you’re sleeping.
But this has been a weird shift for me. The iller I have got, the more ingrained anorexia has become, becoming my identity again. I have lost many parts of myself: my love for travel, my creativity, my sense of humour. And the more people have noticed and expressed their concern, the more it has gripped me. My friends, my family and my colleagues changed how they think of me over time as worry overshadowed any other perceptions. I became someone frail, withdrawn and sick. Not fun or intelligent or energetic. Anorexic.
I have spent the last ten years of my life getting up, proudly putting on my NHS ID badge and going to work, using my experiences to help people. Now, and for the foreseeable future, I get up and wait for the ambulance to collect me to drive me less than five minutes down the road. I go through the doors of the NHS building, as I have done since I was 19, but this time I am the patient, being helped by mental health professionals that were only days ago my equals, but who now pour my milk for me and watch how small I cut my food up. They monitor how many shreddies I carefully measure out into a mug, to see if I am cheating myself out of 5 calories here or there. I tell myself I’m not, and that it’s ridiculous. But is it? Am I being truly honest with myself if I say that I am not trying to get away with not clearing my plate? I am genuinely not sure. Anorexia is strong, currently stronger than I am, and I struggle to work out if I am tricking it, or if it is tricking me.
Just a week ago, I could have been speaking colleague to colleague to the staff at the clinic; making referrals into the service and arranging transfers of care. Now I strip to my underwear in front of them, standing exposed on a scale, overwhelmed with feelings of wanting my weight to go both up and down simultaneously. Anorexia feeling furious when it increases, Cara feeling defeated if it falls.
My job is no longer to care for others, it is to care for myself, and to allow others to care for me. To let my milk be poured and my butter be spread and my independence be taken away. Because I can’t be responsible for myself right now, and I can’t fight anorexia alone.
The last two weeks have been a whirlwind. Last Monday my boyfriend drove me to my Day Support Programme preparation meeting because I was too weak to walk the 0.3 mile trip. He held me up around Sainsbury’s as I picked up my rations of soup and fruit, too tired to make it any further around the shop. Somehow, remarkably, I went back to work, finished up my admin and said goodbye to my colleagues.
On Monday, I walked into the lounge I am now to become very familiar with, and met the other people on the programme. Despite everything I know about eating disorders, I still fell into the trap of envisioning the stereotype of a group of young emaciated girls, however our age range is starkly different to how I imagined it to be. There are women in their 40’s, 50’s, 70’s, and it has been a sobering experience to see how my future could be if I don’t take this opportunity for recovery and run with it, no matter how torturous or impossible it may feel.
I had my initial meeting and signed my contract. I agreed to finish all my meals within the allotted time frame, to engage with treatment and to gain 0.5-1kg a week. They agreed to support me, offer me therapy and help me to get better. If I do not manage to fulfil my half of the contract, I will be asked to take a week of ‘reflective leave’, in which I decide if I am ready to commit. If I am not, I am asked to leave the programme. There are many rules which I thought were overkill. Strict time limits at meal times, no excessive use of salt and pepper, no napkins on the table. My initial reaction was how ridiculous some of them were until I was given my meal plan and panicked. I’m a grown adult, I can use a napkin responsibly (or so I thought). But if that’s truly the case, why was my first thought that if I was allowed a napkin I might try to scrape yoghurt into it when no one was looking? These rules, no matter how stifling and petty they may feel, exist for a reason. And if I want to beat anorexia, I need to follow them.
I shared my anxieties with the occupational therapist. I explained that I was worried I would be the oldest and the fattest, that I’d walk in and people would think I was pathetic dragging this illness into my thirties and that I was too big to need treatment. That I was some kind of imposter and that they’d made a mistake. That I wasn’t sick enough.
“If I had 1p every time someone said that, let alone £1, I’d be rich.”
We went through my meal plan. My diet has been incredibly restricted and as such there is a risk of refeeding syndrome. I am to eat a full portion of breakfast, half a portion of lunch and a third of a portion for dinner. I am not yet eating solids for snacks, instead making up the nutrients I need with glass after glass of milk, something I haven’t touched for months. I feel as though my blood is now at least 70% milk. But I keep drinking it, because I must. It tastes creamier than I remember; it’s amazing how strong things taste when you’ve denied yourself them for so long.
I had mixed feelings walking into the dining room at lunch. There is a sense of relief I have had this week, that starting this programme has somehow given me permission to eat. I am not only allowed to gain weight, I am expected to. I have to, in fact. But as I walked in and saw my portion, I panicked. I mouthed to the OT across the room that I had mistakenly been given a full portion instead of a half portion, at which she gently confirmed that what I had been given was, in fact, half of what I will be expected to eat in a few weeks time. That was a shock and a real wake up call as to how distorted my perception of food has become. Every time we go in the dining room, our place has been set. We are in a different seat every time which is unsettling. This is exactly the reason why they do it: anorexia thrives off routine and rigidity and rituals, so they intercept that early on.
The few days that followed my first have felt both very long and very short. I’ve been weighed twice, attended therapy groups, had doctors appointments. We’ve had Christmas dinner together, all sat around the table shrouded by paper party hats and festive jumpers and anxiety – there’s a weird camaraderie you form with people in these kind of situations.
I’ve been food shopping to buy the things I need for my meal plan, picking up items down aisles I’ve not dared myself to walk down for months, analysing every calorie and gram of fat on the packaging. This is a habit I will need to break, but is one that has been part of my life for as long as I can remember regardless of where on the recovery spectrum I have fallen. I went dutifully to the milk aisle, convincing myself that I needed to buy red milk, because it’s better to buy the red milk and know I’ll drink it than buy the green milk and risk not drinking it at all. My boyfriend reminded me gently but firmly that I was one day into the programme and already trying to cut corners. I bought the green milk, and I have drunk it mechanically at the prescribed times, hating every second of it.
I have spent the days fluctuating between feeling like I’ve been run over and feeling on the verge of exploding with anxiety. Every time I eat I feel my energy immediately depleting – the opposite of what I was expecting to happen. I have been told that this is normal, because my body is working in overdrive to learn how to digest food again. After each snack and meal we have an observation period in which we must stay in the lounge and sit still. I have tried reading to occupy myself but there have been times I can barely keep my eyes open, yet at night I’ve been laying wide awake, trying to add up the calories I’ve consumed over the day and wondering how I’ll possibly get through the next. But every day I have been back in to face the challenges it holds. I have no idea, now that I have been given permission to rest, how on earth I had the energy to go to work every day and exercise to the point of collapse. I’ve been basically horizontal since I first walked through the doors on Monday, and genuinely struggled at times to walk between the dining room and the lounge, which sit next door to each other just a couple of metres apart.
It’s now the end of the week and I’d be lying if I said I wasn’t overwhelmed about what I’ve had to do so far, what is expected of me from now and how different my life is going to be for the next few months. I feel like this mountain is so big that I can’t even see anywhere near the top. I wonder if I’ll ever get past base camp, or if my goal realistically needs to be accepting that I will always have this parasite in my brain, and that the best I can manage is learning how to quieten it while coming to terms with the fact that it will never be truly silent.
It’s a funny time of year to start something like this because Christmas and the New Year means that the days we are in the clinic are sporadic and disjointed. I am filled with trepidation that I am expected to take an enormous amount of responsibility for myself over the festive period as I will be spending most of it at home, and it feels too early for me to be able to do that yet. I am on a knife edge: tipping one side meaning that I succumb to the whims of anorexia, who still tells me that I need to prove how ill I am to justify my place in the service, while jeopardising that very thing. If I fall the other side, I follow my meal plan religiously, which paradoxically actually does prove that I deserve to be on the programme because it shows my motivation and commitment to recovery. I am balancing dangerously in the middle, not throwing myself into either camp. Both are terrifying in their own ways, and teetering on the edge of both feels like all I can manage until January, when recovery, not anorexia, becomes my full time job.
I have been overwhelmed by your well wishes this week and I would be lying if I said they didn’t make me cry at times. My belief in myself and the possibility of recovery has wavered after every glass of milk and every meal, but there hasn’t been a single occasion in which I’ve picked my phone up afterwards and not had hundreds of messages of support to scroll through. Please know, that although I’ve not had the energy to reply to them all, I have read and absorbed every word. Thank you.
The pause button has been pressed on the days of getting up early, dressing myself for work and checking my NHS mail for referrals. I now wake up, put on the most comfortable clothes I can find and await the patient transport – which it transpires comes and goes whenever it likes. I dutifully sit down to eat my meals and snacks, go to various therapy groups and ply myself with supplement after supplement, inundating my organs and bones with all the nutrients it has been starved of.
I have never been so grateful for the NHS. As my employer I have a generous sickness package. As my carers, I have a generous treatment package. The thought of this sort of service being unavailable at some point in the future is terrifying to me, but I guess that’s all the more motivation to recover.
So, I am at the very beginning of this rollercoaster. The barriers are down and it feels okay, but my portions remain manageable and my weight is as yet mostly unchanged. I’m preparing myself for the ups and downs that are imminent.
It’s onwards and upwards from here.