AtypicallyRecovering

Photo- mine, turkey tail mushrooms

I have to be fair about how ‘therapy’ was – not just the bad ending. It started out well. I wasn’t in good shape, after not eating solid food for about a week, and in the middle of ’round 2′ in 2 years of losing weight rapidly. The first part of the relapse started in May 2021. When my labs came back, my kidneys were in lousy shape – as in getting used to the idea of a transplant list. I was in acute renal failure from cutting carbs too much, breaking down muscle that my kidneys had to deal with circling around in my bloodstream. I got out of that by increasing carbs, but still restricted. Then I restricted more, but kept ‘enough’ carbs on board not to make my kidneys worse. I’ve had chromic kidney disease for about 8 years, as a result of inadequate blood pressure and heart rate, along with dehydration as a result of decades of restricted eating.

I’ve been through enough relapses (vs. my ‘normal’ restricting that I thought was fairly normal) to know when I’m getting into trouble, and it didn’t take long when I started losing again. Over the past 4 1/2 years, I’ve lost/gained/lost/gained a total 220 pounds (45 down/up, then 65 down/up). That’s hard on a body. When I was having more and more difficulty with just getting in my 500-600 calories/day and unable to ‘snap out of it’ (labs were stable) I decided to contact the eating disorder therapist I’d seen on Facebook. I told myself that if I could find her, and she was still treating people, AND had an opening, I’d take that as a sign that it was meant to be. I also thought there was no way all three of those would happen, but they did.

By the time I had my first phone session with Ex-T, I was barely even drinking enough water. I was getting just enough in, but that was about it after I’d cut the tube feeding formula out 5 days earlier. Ex-T was at an airport flying home, and she talked me through an 8 oz bottle of kefir. I’m not sure how long it took, but it was hard. My head was so against anything with calories, and it was a fight to get every sip down. She had a connecting flight, and called me from the next airport, and again when she got home, like she said she would. To distract me, she sent some video of some deer she’d seen near where she’d been staying. She was very kind and patient, just as I’d seen on the TV show.

For the next several weeks, she called a few times a day to check in and tell me what to eat. That was very helpful, because it took the ‘blame’ of eating away from me, so my head wouldn’t go after me as much. It was also difficult, because I wasn’t used to some of the foods she wanted me to eat (though she never told me I had to eat anything that I really didn’t like) and the amounts were not what I was used to. She didn’t asked me to eat a lot at one time, except for once (2 whole bagels and cream cheese). I just wasn’t used to eating what normal people did, because I never knew what that was like. From that, we both realized that I had no clue about what normal eating was- I don’t remember it. So, she was trying to undo 5 decades of food restriction, whether imposed or when I went off the rails during the summer of 1981 and haven’t been the same since.

Refeeding syndrome was a risk, and both Ex-T and my dietician said the same thing. Ex-T was in charge of food, but I had to see someone local, in person in order for Ex-T to accept me as a patient, which was prudent. I’d seen the dietician a year or two before then, so had a bit of history with her, and knew I could work with here on this end of things. I hadn’t heard of refeeding syndrome, but looked up some stuff on it, though retaining information was a problem, and still isn’t back to my ‘normal’ of reading 3-4 novels a week. Ex-T gave me firm instructions that I was not to eat anything she didn’t tell me to eat, and if I wanted something else, I needed to check with her, and this was to keep me safe at that point. It wasn’t about controlling my food (or me) as much as it was to keep me from getting into potentially fatal complications.

I ended up with a concussion about a week or so after moving from my childhood home to an apartment, and that was problematic because of vertigo, nausea, memory issues, and constant ringing in my ears (still have constant ‘cicadas’ chirping nonstop 3 1/2 years later). That move was about a week or so after the first phone calls. Then, there were a bunch of infections and a sepsis scare, and she was very attentive with calls and messages. My blood pressure and heart rate were still erratic, and I was on activity restriction limited to being up for 10 minutes three times a day except for getting food or showering. My dietician said the same thing, without talking to Ex-T, so that helped that they were on the same page. I passed out a lot, and also have seizures (diagnosed when I was 22), which were more unstable. I was a mess. Being conscious was never guaranteed.

For about 5 months, if Ex-T said she was going to call, she generally did. I knew that the contact would decrease as I got more stable, and was fully on board with that. There were some humorous conversations and messages, and the relaxed ‘tone’ to the ‘therapy’ was pleasant. I had ‘homework’ assignments, to give background info on family, food history, trauma history, medical issues, etc. Those first 5-5 1/2 months were fine. I didn’t have any ‘red flags’ going off about anything. I had hope that I was going to get better.

Then, Ex-T asked me if I could pay double for more intensive contact for 6 months. I agreed, hoping that it would cut time off of the back end of the estimated 2-2 1/2 years the five stages would take to work through. Within a couple of weeks, the first signs of trouble started. Ex-T had gone back to Europe for the winter, and was working ‘in person’ with several patients who were further along in the program. I heard nothing from her for a couple of weeks (and was in chaos with what to eat). I finally contacted another patient who I’d been in phone contact with for a few months, and she told me that things had been very hectic, and a guy from Oceania had just shown up at the airport, and he was only 29kg (about 64 pounds), and Ex-T felt she couldn’t turn him away.

I have a hard time believing that someone just showed up at the airport to start ‘live-in’ treatment from another hemisphere without there being some planning involved. I believe she knew about this when she asked me to pay double. My heart sank, and the first very serious doubts kicked in. I understood not wanting to turn away someone that ill- I had no problem with that. But I did have trouble paying for more intensive time that was sporadic at best, and didn’t start for several weeks. I asked Ex-T if we should postpone my more intensive ‘therapy’ until the guy was more stable. She said no; she could do both. But it didn’t turn out that way. I never really got past that point in the ‘five stages’ in her program (stage 2), but I was so ashamed to send photos of what I’d eaten (how she checked what and how much I was having), or have someone on the phone talking me through food when she had the 64 pound guy there. It messed with my head a lot.

I was stalled with food for months after that, and then ended up with issues related to gout medication, so I had to change the types of protein I had. That was just one more thing that focused on food and medical stuff. All of that makes eating disorder recovery so much worse. In the past, I didn’t have to weigh out protein or limit (severely at times) how much of a protein food I ate. Even being diabetic wasn’t that big of an issue since I was diet controlled only for 12 years. I’ve been on insulin for 18 years now. So, I wasn’t supposed to focus on numbers, but had to for insulin dosing and gout flare prevention. Ex-T was agreeable to me managing the amounts of protein since I was here alone, and knew what I needed to do. She would still give input about other foods, at least for a while.

At any rate, the first 5-6 months were difficult only in that eating was so miserable, but not because of Ex-T. I was sick a lot. I passed out fairly often (have had a ‘safety routine’ when I first get out of bed, to avoid hitting the floor). My head was constantly upset about how much I was eating, even though I knew that for a ‘normal’ person, the portions were more snack-sized (though had 5-6 of them a day). I knew she wasn’t asking me to eat too much. My stomach was a mess with bloating, so that didn’t help. I was (and still am) using an NG tube to be sure I got enough fluids in. That started just to get me through a bladder infection, but it’s still in 3 1/2 years later (I change the tube every 4-6 weeks, and was trained as a RN on how to do that; do NOT attempt that if you don’t know what you’re doing- you could literally drown from it). I am doing better drinking fluids normally, but on ‘bad bloat’ days, it’s still hard. I want to remember more of the OK time. The lousy ending is still very raw, so I’m struggling. But it wasn’t horrible at the beginning. And there were some OK months with fairly regular contact after the guy was more stable, when I was supposed to be doing more intensive stuff. There were many calls that didn’t happen, and that got much worse a couple of years ago and continued getting more sporadic to the tune of not getting a call for a month (more than once or twice), but I didn’t know I was being breadcrumbed at the time.

It saddens me a lot that someone whose views I once respected so much became such a source of pain and stress. Trust is gone, and has been shaky for a while. This was a last shot. If I can’t get it together with my dietician and the YouTube recovery videos, I will never be free of the food wars in my head. I can deal with getting enough macros in each day, because my head ‘allows’ for keeping my kidneys from a third run-in with acute kidney failure- that’s been a loophole for several years.

I saw my dietitian today for the first time in 6 months (long summer of biopsies and tests), and she thinks I seem stronger mentally after ending contact/therapy with Ex-T, after I said I felt stronger. She is also checking into the YouTube content creators who share information based on their experiences with being recovered, and believe in a ‘no diet’ mentality. Single serving size packages of foods (frozen dinners, hummus, guacamole, fruit, etc) are also helpful for not being as scary. I’m no longer having to follow more food restricted by Ex-T, so my veggie intake has gone up (especially eggplant parmesan entrees, and bell peppers for a chickpea/feta/veggie/olive salad). So I am moving forward.

I don’t have the hope I once did, but I’m not giving up.