Atypically Recovering

The internal messaging has been maladaptive for so long that I’ve been in a peripheral relationship with ‘normal’ when it comes to food and eating since I was a kid. But those aren’t the only things that get messed up with restrictive eating disorders or chronic under-eating. Things like hunger and thirst are also a mess. If I were to encounter a buffet like the one above, I doubt I could be in the same room.

I hadn’t felt physical hunger for decades more than a handful of times separated by months or years. When I started having those annoying internal rumblings in my stomach after starting to eat multiple times a day, I panicked. I had no clue what to do about them. Ex-therapist told me to eat rice cakes and vegetables, which was incredibly triggering to keep restricting. “Normal” people would eat when hungry, but the ED ‘voice’ says that it’s a sign of burning fat and losing weight, so hunger was/is a cue not to eat. I still fight that illogical head noise. I know logically that physical hunger has nothing to do with whether or not I’m burning fat. It’s the body doing its job to keep fuel coming in when needed.

I’ve gotten a bit better at eating the next thing I planned for the day, but still prefer to save things for ‘timed’ eating, and am afraid that if I eat what I have planned and get hungry later, I’d be “out of food’ for the day. I know it’s not logical, but there’s no room for logic in an active eating disorder. Not eating becomes a sort of comforting or stress-reducing move, by relieving the shame of eating. It’s the eating disorder dictating it, not my logical nurse brain. If someone else, no matter their size, said they were hungry, I’d suggest they find something to eat. But, in my head, I have to look like I deserve to eat before indulging myself like that, and I’m a long way from that point. Being overweight, and “atypical”, it’s going to be a while before I feel I deserve to eat, while still knowing I have to eat something daily. Chaos rules an ED mind.

Disclaimer for the next paragraph: DO NOT attempt the NG if you are not trained in the proper procedure by a qualified professional- under the right circumstances, or you could end up with it in your upper airway, and if the fluids get away from you, they could literally drown you, or send small amounts of fluids into the lungs causing aspiration pneumonia. .

Thirst has been a huge one to come back. I had an NG (nasogastric tube- that goes from the nose to the stomach) for over 4 YEARS... I managed it myself, knowing how to insert them from nursing school, and the protocols for flushing and changing them. It was initially inserted in the summer of 2022 to make sure I got enough fluids because of a bladder infection, and volume tolerance not being good with eating again. It was supposed to be in for a week while I was on antibiotics. I’d never really had much interest in fluids aside from diet sodas during previous relapses. They’d fill up my stomach with fluid (and toxic chemicals), so a means to an end. I quit artificial sweeteners ages ago, because of feeling unwell after consuming them, especially after the dysautonomia diagnosis. Basically, I just forgot to drink without diet sodas. It wasn’t about any fears of ‘fat’, though I didn’t like the feeling in my stomach, or knowing that body checks (checking wrist size, feeling for various ‘landmarks’ on my body, etc) were changing with fluid retention.

With kidney disease, enough fluids are essential to prevent/delay progression of the disease. I’d try getting rid of the NG, and for 1-2 days, I’d do OK. It wasn’t what I needed, but not horrible, but I couldn’t eat what I was supposed to, so the tube had to go back in. For some reason, the slower rate of having it go in by tube was easier to handle physically. I finally took it out about 2 months ago (maybe a bit longer than that, but had to put it back in once), and while I hover around 1600-1700cc/day (2 liters would be better), I’m doing it by drinking. And I’m finding that the thirst cues are storming back, which is helping. Because it’s beneficial to keeping my kidneys from going AWOL, my head stays neutral. Food intake has decreased, but without having to force myself to eat “X” amount of food anymore (never got to the maintenance goal), I can pick and choose what and when I want something, making it easier to get the fluids in without overloading my stomach.

The biggest ‘thing’ outside of me that has been a source of shame and guilt is the mirror. When I was at my lowest adult weight (lower than what looks good on me, but not technically underweight per random charts that put every body into the same ‘scale’), I liked looking in windows, mirrors, or anything else that validated that I was smaller than I had been. Not any more ! I have my bathroom mirror ‘covered’ by vanity organizers with verticality to block most of the mirror that reflects my physical being. When I brush my teeth, I can’t look at my face. I find it too demoralizing.

I’m also a certified member of “get clothes that are 2-3 sizes too big” club. I don’t want clothing to ‘touch’ me when I’m standing up. I get men’s __ (insert number) extra large/long t-shirts in sizes that some folks could make a tent out of. To have clothing that fits means I feel even more bulky and gross than if I can stand up straight and, other than my shoulders, have nothing hit skin. On days when I’m in more pain, even the weight of a t-shirt is too much, so the ‘tent shirts’ help with physical ‘comfort’. I wish I’d had such shirts when I was in St. Tropez in 1977 and wanted to go swimming in the Mediterranean, but had nowhere to change into my swimsuit. The other tourists were changing next to their cars, but I was a teenager, and no way I was doing that. With my current shirts, I can easily get in and out of my bra without taking my arms out of the shirts, and the shirts are longer than my shorts, so cover the lower hemisphere without showing anything.

It’s not about weight, food, or calories, though that’s where the focus goes. There are more things that I’m weird about, and each person with an eating disorder has their own ‘rules’ about things they will or won’t do/eat/drink/wear/etc. One person I was in treatment with decades ago would only eat dinner rolls and bananas (and they let her do it at that place, now shut down in California). I had a food plan that was put in front of me 4 times a day, and while they were lax on checking if I’d eaten it, it was balanced. If I’d known about the banana loophole, I would have grabbed it. Someone else ate peanut butter by the half jar-full, but then did her bulimic thing to get rid of it (not in the treatment place). Another ate so many carrots that she started turning orange- her palms literally had an orange undertone. I have a mental list of my old rules going back to my teen years. It was exhausting.

This is the longest period of active restricting in my life. It’s SO much harder to change the internal dialogue with nothing from my past to reach for as “normal”. There never was any “normal” (family and friends would ask me about the weird eating at our house). I’m doing the best I can, and yet a lot of the time it feels like I’m going nowhere. My birthday is coming up, and it’s doubtful that I’ll allow myself a cupcake. A stupid cupcake when I’m in my early 60s should not be a problem. I have gotten to the point of not caring about a lot of things I did when I was younger (clothes, what people think of me, putting others first at the expense to myself, hair, etc), but the ED won’t budge. I know it’s a process, though it seems elusive. I know others have gotten well without formal therapy or treatment, so that is encouraging. It’s also hard in a vacuum.

But I’m still looking at the recovery folks on YouTube, so the stuff I’m putting into my head is pro-recovery. I just hope it clicks on an action level. I ‘get it’ from a logic perspective. But being told about ‘more’ (eating) still invites ‘less’ (eating).