Atypically Recovering

TRIGGER WARNING: some discussion of “numbers” and specific eating disorder behaviors mixed with medical need to know numbers for other chronic medical disorders.

After another relapse with a restrictive eating disorder 2 1/2 years ago, I’m still struggling. I am getting help from someone who has been dealing with eating disorders for 40 years, and I was very fortunate to get the opportunity to get help from her. I’d first heard about her in the late-90s, on a news program, and was stunned at how well she understood what was going on in my head. I’m nearing the so-called ‘golden years’ age wise, but emotionally I’m stuck in one of several developmental stages that were interrupted by trauma- physical, sexual, and emotional. I feel like a mutant. I’m isolated because of disability, and even if the very few people I know here try to understand, they simply can’t- which is very good for them. I decided I needed to blog about this. I know I’m not alone in this- and many, many people face these same issues every day, just like I do.

I have been working with this internationally known therapist for about a year and a half. That time period has been plagued by a lot of medical issues and deterioration, and some of the medical stuff means i have to be aware of protein, sodium, purines, carbs, and my fluid balance, which is a lot more than I’d prefer to have to deal with when I’m not supposed to be focusing on numbers. But I have to. My dietitian (local) says that once someone has a diagnoses of anorexia nervosa, and they restrict more/again, it’s still a form of anorexia even if I’m overweight. I guess it’s more like atypical anorexia. I just know that I’ve eaten more than I ever did before the first round with active restricting in 1981 . It’s been very hard to adjust to eating that much (and it isn’t an unreasonable amount). 

I get very frustrated with myself, because I’ve been in this situation on and off since 1981, with no prior frame of reference for “normal” eating. My folks were restrictive eaters, and looking back at how things were growing up, everything about food was messed up BADLY. That was an unpleasant revelation. I knew I didn’t like it when I was growing up, but the longterm impact of all of that, along with my own restricting, has been immense. My mom started bribing me to lose weight when I was 6-7 years old- a dollar a pound, and then for every 5 pounds, a big bag of candy, which made no sense. I wasn’t remotely overweight at that age.

When I started with therapy again, I hadn’t realized I’d been under-eating enough to cause a slowed heart rate, low blood pressure, passing out, constantly being cold (huge change), miserable distention when I eat the ‘mini-meals’ throughout the day. I don’t look like a restrictor, but I’ve got the physical issues telling me that I am going to have to eat more, even though I still need to lose more weight to improve some of the stress in my joints and spine. I’d lost about 60 pounds in about 7-8 months, and then it all just went stagnant. 

The verdict from my therapist and a local dietitian is that I need to eat more. I’m down nearly 100 pounds from my highest weight, which was back in the mid-90s. But after a week of too many appointments the week of Halloween, the chronic pain in my shoulder and knee have become extremely difficult to tolerate ‘enough; to hang on until I see the pain management doc. I’ve had many sources of chronic pain for about 28 years. I’ve gained weight I don’t need to gain, so my head is going bonkers over that. I had been given steroids for pain by my internal med doc, so that didn’t help. I stopped taking them after 2 days because of weight gain. Gaining weight is worse than fixing pain. Mostly.

I’ve had a nasogastric tube in for about 17 months for fluid intake to protect my kidneys since I have a lot of trouble with reflux and volume tolerance- though it’s getting better, and I am drinking more. On bad days when the physical stuff acts up, it’s a way to get protein water into me so I don’t come up short there. I change my own NG tube every month (I was a RN for over 3 decades, though worked for only 20 years due to a broken body). I do NOT advise anybody who isn’t trained to do that to try putting their own tube in- depending on the size, and type (guide wire/stylet), a person could do some significant damage to themselves. 

When I first started therapy this time, I had no idea how messed up my head was about food. I thought there wouldn’t be as much focus on food since I need to lose more weight, but both my therapist and dietician (who hadn’t met, and hadn’t spoken to each other at that point) felt that I should only be up for 10 minutes three times a day, and that I was at risk for refeeding syndrome, which I have since learned can be fatal. I had to start slowly and only eat what is considered safe. It was very hard. It still is, but now I am at least using the food diary on MyFitnessPal to see if I’m getting enough in me. I still freak out, but I’m more of a ‘quiet’ spaz, or I just freeze when I open the fridge. I’m still not OK’d to do much in the way of exercise (I live in an apartment complex with an exercise room with no impact bikes- but no can do for now).

One of the early calls with my therapist involved talking me through a 240cc bottle of kefir while she was at an airport getting ready to fly back to her home. At the next airport, she called to see how I was doing. I hadn’t eaten anything with calories for 5 days, and had been using some tube feeding formula for a bit before that, just to have enough energy to get some things done to do a major move to a new home. She has also has someone who has already gone through her program to be sort of a buddy and another support person, which has been great. Not many people who know me here ‘get’ what it’s like to constantly be hounded by the eating disorder voice. 

I talked about what I needed to eat with my therapist and dietitian, and I was terrified, even though I was never asked to eat a full meal, but smaller amounts of food 5-6 times a day. I’m still not great at doing that consistently, but I am trying to get in ‘enough’, and use something objective (MyFitnessPal) to track what I eat so I know I’m not eating too much protein for my kidneys, or how many carbs because of needing to calculate insulin, and sodium because of fluid retention whenever I’m up, I also have dysautonomia, so when I stand up, fluid goes south into my feet.  I’m used to diabetic portions and food categories, and am having to learn what a proper portion size is. I’m learning that it’s not always what the package says- whether for sodium, potentially unsafe medical impact from some foods, or having a bit extra because I’m short on one or two macronutrients for the day.

Early in the Summer of this year, I found out I’d been given too much gout medicine to be safe for my kidneys for THREE YEARS. I had to change up everything I was eating, and for 1-2 months, I was terrified of eating any protein with higher purine levels. I’m essentially vegetarian about %80 of the time (lacto-ovo). It also really messed with my head to the point that I’ve backtracked from any consistency with eating. The crazy part of eating disorders (well, one crazy part) is the awareness of needing to do things and being frozen emotionally when faced with actually doing them. And the more I under-eat, the more obsessed I am about food and “numbers”. I know from a bad relapse in the late 90s that as soon as i was in better shape physically/nutritionally, ALL of the crazy thinking just stopped. I know that, and still I am struggling to eat what I should. 

Well, this is the first post about the journey I’m on, and hope to get to the end and be much better off emotionally and physically.