Moments of normalcy bring hope in the daily chaos of eating disorder recovery

Moments of normalcy bring hope in the daily chaos of eating disorder recovery

Our life in survival mode continues.
My daughter Summer and I have returned from another hospital admission and, like previously, are struggling to get back on track. The hospital admissions are always destabilising. We had hoped that a switch would magically turn in Summer’s head this time, but darkness remains.
Summer is caught in a scary world, which I have trouble understanding because I can still find it hard to separate the eating disorder (ED) from her when her mood changes. Is she just in a bad mood, or is it the ED? We have some pretty good days in which I will glimpse the actual Summer; she’ll hum along to a song or laugh at a joke, and I see her eyes light up. She even made a joke herself a few days ago. That was one of the best feelings in the world. On those days, I genuinely feel we will get out of this hell. But then, often, a few bad days follow, and the whole world comes crashing down around me. I get my hopes up, and then I fall hard every time. Even on bad days, I am lucky because when her anger and fear subside, Summer hugs me, says she loves me, and is sorry, even though she often doesn’t remember what happened. I have read that some children with an eating disorder can take years before they are capable of such gestures.

The trials of a meal plan for every day

We have ‘half’ returned to the eating disorder centre, where we decided to stop going in December; half, because we have decided to stick with the therapist that Summer had before her second hospitalisation, and are meeting only once a week with the centre’s nutritionist. The nutritionist seems more capable now. The hospital strongly recommended we follow this course of action, at least try it, and so far, having the appointments on different days is an improvement. This also means split visits, i.e., instead of the initial single weekly visit to both nutritionist and therapist, we meet with the nutritionist once a week at the centre and on another day with her therapist; this is an advantage because meeting once a week increased Summer’s anxiety and stress as she had to deal with everything at once.
From what I have read, Italy takes a different approach to refeeding than many other countries. The nutritionist initially gave us a meal plan for every day of the week, but this freaked Summer out. She can’t do the set meals when they are imposed, as it makes her feel like a caged animal.
This time, the nutritionist has given us a meal exchange plan. So, as long as we meet the quantities of the various types of nutrients that have to be part of a meal, it is okay, but we can switch them around. Our plan focuses on carbohydrates, proteins, fruit/vegetables at mealtimes, biscuits/yogurt/milk/fruit for breakfast and snacks. We don’t have any high-calorie supplements. A nutritional supplement was tried at the beginning, after Summer’s first hospital admission, but she has refused any nutritional supplement.

With an ED, refusing is not just saying “No”

Refusal with an ED is refusal at a different level. Summer would probably burn all the calories she’d get from the nutritional supplement in the hour-long meltdown or outburst, so the effort wasn’t worth it.
The meal plan focuses on specific quantities rather than calories. This has been hard to follow, and though months have passed, we still mostly feel abandoned in the middle of a lake in a little boat without direction. I am surprised at how little practical advice is given by professionals, or at least by our professionals, to battle these issues.
I understand each child with an ED responds differently, but everybody has told me to, “Make Summer eat”. I read as much as I can, join online groups for carers, and do anything to find advice to help us navigate this hell.
Our days revolve around the planning of meals. If we go somewhere, I need to pack snacks, and we need to plan what time we leave and at what time we return home. I’ve never planned these things before, and in the beginning, I would forget the snacks, leading to confusion yet again. I now keep a diary of what Summer eats so we know where we’re at. I didn’t do this initially; this is new to me. Plus, I am not well-organized, and my life is, and always has been, somewhat chaotic.

I try to appear to be managing

I have had two or three different freelance jobs, which I love because they provide diversity, which is something I thrive on. I have hardly worked since last October, when Summer was hospitalised for the first time, but my work is still essentially who I am. I find it difficult to be well-organised, but I’m trying and appear to be managing, although it causes me stress.
Summer needs to know where she’s at, what time we’re eating, when we’re home, and things like that. Before she developed her eating disorder, we often had our friends at the dinner table, too. Friends were welcome and could stay over for lunch or dinner if they wanted, which they often did; I tended to plan lunch and dinner at the last minute, so numbers were never an issue for me. There was always food in the freezer we could add if it wasn’t enough. Those times have, sadly, changed. I hope they will return because I love it when my children’s friends join us around the dinner table and hear their teenage gossip stories.

Artful ED throws in extra food challenges

Several things make meals challenging. One of these is, without a doubt, calorie counting. Summer has become obsessed with counting calories, something I have never done. She seems to ‘see’ food with little pop-up messages containing numbers related to the calories; her brain is like a computer, and she can remember all the calories in different foods. So, a cappuccino for her is a specific number of calories, while I’ve always thought of it as simply coffee with milk! I don’t think I had consciously realised that a cappuccino contains calories.
The brain works differently when an eating disorder is present.
Another challenge we face is “who finishes when”. Summer might feel we are observing her if we finish eating before she does, but we are not ‘allowed’ to finish our meals after her because this will make her feel like she stuffed herself. So, I practice speed-eating at the right moment. If I finish too soon, I must take second or third helpings. So, I eat slowly (or at least try) until I can see Summer is almost finished, and then I eat quickly to finish just bites before she does.

In the evening, we create ‘happy’ rituals as a family

It also helps to talk a lot at dinner, something we’ve always done. Mealtime has always been our time together, whether with friends or not; no phones are allowed at the table, and the TV is switched off. Although now it’s just the three of us at the dinner table, we talk a lot, Summer’s older sister fills us in on the latest gossip at school, and we have fun at the dinner table, at least we try; by chatting and having fun, meals become easier for Summer.
We also try to use ‘happy’ rituals as a family. After dinner, we watch a series together while we eat fruit or dessert. We look forward to these moments every day, more so if it’s been a rough day.
The road to recovery is incredibly bumpy, and the journey is wild. It is not the kind of trip I’d hoped to take, nor do I wish it upon anybody. There is a light ahead, I am sure. On many days, simply going to bed is great because it gives the glimmer of hope that the next day will be better.