Photo: Mine
I’m not drowning, but I know there’s been a shift about getting back to an earlier weight that wasn’t my goal, but it’d ‘do’ for now. I gained a lot of muscle when I started pushing up calories back in 2023 (Autumn) after discussing it with my dietician and I went too fast. I wanted to get it over with, but I regained everything from that part of the relapse. This is the longest I’ve actively restricted (vs. my family’s ‘normal’ restriction) in my life. I relapsed 5 years ago this month after a medical procedure that left me somewhat exposed for the prep, and I was mortified (they did nothing wrong). Within 3 months, I lost 40 pounds and ended up in acute renal failure because of cutting out carbs too much, and gained it back while trying to get my kidneys in better shape, which I did. Then I lost 60 pounds, and regained that- so within 5 years, I’ve lost/gained/lost/gained 220 pounds… 100kg. That’s a LOT. I was with an ‘eating disorder expert’ for a lot of that last part. And, ended up in acute renal failure again.
It’s so frustrating to know that even with ‘help’, I ended up in worse shape. Yes, I gained a lot of unwanted muscle, which weighs more than fat. I am eating about 2x the roughly 600cals/day that I was for most of the weight loss phases. I understand that food is fuel. But I don’t understand why I’m still so messed up after so long actively trying to do better, other than that was the ‘norm’ I grew up with and have existed with for most of my life. I’m trying to learn normal wherever I can.
I remember watching an ‘Elzani’ YouTube video where her family had their usual Sunday roast chicken dinner. I was dumbstruck that they had 4-5 vegetables along with roast potatoes (a starch in diabetic world) at one meal ! I didn’t know people did that. I’m learning ‘normal’ by watching YouTube- go figure. I watch “Grackle” to watch someone without an eating disorder, and her family as they enjoy food for the sake of enjoyment. She’s naturally thin (whole family got stellar genes), and tries a lot of stuff. I also like trying things, but have noticed that my head is getting less tolerant, even if I only have 1-2 bites of a food deemed ‘bad’ or ‘unsafe’. IF I put something in the day’s food line-up that isn’t some kind of “eating disorder approved” fruit, veg, dairy, or starch AND it’s not the bare bones version of it, all of the numbers for the day still have to add up to a day without something ‘extra’… so it becomes not ‘extra‘.
My ex-therapist gave me a food list (eventually; during the first 6 months, she told me what to eat and how much) and it was more like some 1970s diet plan but with no measurements to speak of (to avoid the whole numbers thing, but I have to know carbs for insulin and protein for kidney disease limitations). A ‘tablespoon’ is actually a cooking spoon to the ex-therapist- but even that is too vague. There was also a gross beginning of the whole refeeding part, with more ‘developmental’ foods like oatmeal, applesauce, hummus, yogurt, and 2 kefirs/day. When I moved on to more types of food that required teeth (insert rolling eyes emoji), she told me to cut grapes in half so I didn’t choke, like I was 2 years old. There is validity to going over developmental ‘stalls’ to get back to more of a chronological age that is in sync with emotional development, but cutting up the grapes? My throat is still 60+ years old. I have swallowing issues, but not with grapes. Speech therapy taught me how to navigate that. It’s still hard to have anything she didn’t ‘approve’ when I know that what I’m choosing is fine, and I don’t have any of the issues involved with some food/food groups she ‘banned’ a much as possible within my budget, which is most definitely an issue on disability…(nightshades, non-organic stuff, etc; I live in the US- our food supply is not ‘high brow’ or safe enough for her rules to allow me %100 ‘clean’ food with a fixed income). I like several things in the nightshade family (potatoes, eggplant, red/orange/yellow bell peppers) and not having them limited my options. I’ve gotten over that rule.
I’m still working on remembering consistantly that everyone has a different type of body. Trying to shrink a miniature schnauzer into a teacup Yorkshire terrier is foolish to even consider- nobody would be able to justify starving the schnauzer to try and make it something it isn’t… but it’s what I’ve been doing (or had done to me) for 55+ years- and I’m still not a Yorkie, and never will be. Undoing that mindset is so difficult, even though logically I know it’s messed up. So, I don’t know what will happen next, other than I am still invested in keeping my kidneys functioning. I’ve caused a lot of permanent physical damage, and my go-to reaction to food is still keeping the ‘numbers’ OK as determined by my illogical eating disorder brain. If someone else was doing the same things I am, I’d see the problem for THEM, but not for me.
Tag: eating-disorders
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My Head Is Shifting & It’s Not Good
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Online Eating Disorder Recovery Help
Image- general online search
I started looking into online eating disorder support options a couple of years ago when it seemed that my therapist was only a part time social contact person, and then only when it was convenient for her. I didn’t expect constant contact, but wasn’t even getting phone calls when she said she’d call, so I knew I needed to find other options. YouTube has been very helpful with eating disorder recovery information (professional and for patients), ED coaches, and people who have recovered largely on their own with the intuitive eating philosophy.
The general idea is to get to a place of eating what one wants, when they want it- and not to restrict anything. Ever. I have some medical food restrictions, but I’m working on the “no rules” eating goals as much as I can, and it is hard. Back in the 80s, I did something similar with Geneen Roth’s books. The idea there was to avoid the ‘good’ and ‘bad’ food categories, and just see food as fuel. That is still part of intuitive eating. Back then, I got things I wanted to eat, and kept my pantry stocked. That took away the ‘forbidden’ food idea that just leads to craving those items more, and setting up bingeing because of restricting. If the foods are always available, the idea was that I could have them when I wanted, and took away the obsession with something I wasn’t “supposed to” have. It was a good thing for me, and I focused on things I really wanted, and good quality versions of them. I started to enjoy those things in small quantities because I could have more, but mostly, a few bites was all I wanted. I was never a regular binger, so that part wasn’t really relevant, but with restricting so many categories of foods, the idea of ‘no bad foods’ helped make them less terrifying.
With YouTube, I have favorite ‘recovery journey’ channels (Elzani, Elzani Singleton, Megsy Recovery). Elzani’s journey could be triggering because of her severe emaciation in the beginning, but she had the motivation to get well that was helpful for me and still is. I wanted to try new foods because of her channel, and love how supportive her family is. Megsy Recovery is also good, and focuses on daily challenges with specific foods and topics. They are both pro-recovery, and have been incredibly helpful. Often, I’ll eat while watching one of their videos, both for distraction and information.
Tabitha Farrar is a recovery coach, and a recovered anorexic. She is direct, and has a lot of videos that explain how the body does all it can to survive, and why there is a lot of damage to repair physically as well as mentally. She understands and promotes the idea that body size is irrelevant to the type and severity of the eating disorder. The rules for underweight ED sufferers are no different for those in larger bodies. I’m still coming to terms with that, as I have trouble internalizing the idea that what I see in the mirror ‘deserves’ food, but I’m starting to see how food is simply fuel but can also be enjoyed just for the sake of liking something. Tabitha has written several books. “Rehabilitate, Rewire, Recover” is her main book (2nd edition now), but she has smaller books on weight gain fears, and dealing with issues common to those in recovery. Elisa Oras is also very good as a recovered person, now in her second pregnancy. Her focus is intuitive eating as well, and she posts videos on various ED topics. “BrainwashED” is the title of her book.
One of the biggest advantages of online recovery help is that there are no “business hours”. With my weird sleep patterns, I can always look up a video or read something (short amounts, since attention span is still messed up). If I didn’t quite grasp something, I can rewatch or reread their content. I’m not judged, and I can pick and choose what seems like it will be helpful. There are some topics I don’t have issues with (spouse, kids, etc), so I can skip those. Repetition happens at my pace, and with the content that is most useful to me. It’s completely customizable. It takes a lot of repetition to rewire the brain to escape the eating disorder voice and rules. That was supposed to be the goal with my former therapist, but there was no instruction on how to do that. YouTube has excelled in “patient education” via these online recovery channels, as well as professionally directed seminars. I also ‘see’ people who have recovered, showing that it is possible, even without a ‘therapy’ angle. I am NOT ‘anti- inpatient eating disorder treatment’ or therapy in general. If someone needs a higher level of care, that should be the priority. It can help shave months off of recovery done only with outpatient resources, and if someone is medically unstable, hospitalization is critical. Every 52 minutes, someone dies from an eating disorder in the US alone.
https://www.southdenvertherapy.com/blog/eating-disorder-statistics
YouTube also has a lot of professional videos on eating disorders, to explain the nuts and bolts of EDs (not dependent on weight), and topics like refeeding, medical implications, etc. As a former RN of 35 yrs (worked 20 before my body broke), I appreciate the professional information. Dr. Jennifer Gaudiani is one I like. There are also good channels by “Balance”, “ACUTE” (medical stabilization unit in Colorado), and many more.
Besides YouTube, there are a LOT of ‘written’ websites that have really good information. NEDA, BEAT, ANAD, Door2, Balance, ACUTE, and professional research sites have a ton of recovery information. There are many others as well, but these are the ones I’m most familiar with. I’m the sort that likes explanations about why something is happening or difficult, and the internet is loaded with them. I am cautious about sites with no connection to a legit organization. I recently learned that while there are great recovery coaches online, there are also pro-Ana ‘coaches’, which horrified me. If any site or ‘coach’ promotes restriction of any kind, they should be avoided like the plague. There is a sub-type of ‘Ana Coaches’ that get into twisted fetishes, asking people for photos of their decreasing weight, and use those photos for sexually pathological reasons. Their ‘coaching’ is a form of grooming for sexual exploitation, and blackmail is often involved. NEVER send photographs in any stage of undress to an online ‘entity’. Once they are on the internet, they can be shared and sold. You become ‘trafficked’, and some perv is out there spanking the monkey while looking at those photos. Ewww…
Well, this is what I’m using now to get well, I hope. I’m able to understand that all bodies are different by looking at animals… I would like to be a greyhound, but am more of a bulldog. Neither dog is ‘wrong’ or ‘unworthy’, but simply that they are different types of dogs. Humans are also various shapes and sizes, and those are not ‘imperfections’, but simply how each of us is built. To deprive the bulldog of what it needs would be so very cruel, and yet that’s what I’ve been doing (or had done to me) for 55 years. It’s hard to undo that mindset, but that’s what I’m hoping for.
Resources:
https://pubmed.ncbi.nlm.nih.gov/37906085/
https://www.acute.org/?msclkid=602e9f1d8169160adfe0f6a1d312e2cd&utm_campaign=Branded&utm_medium=cpc&utm_source=bing&utm_term=acute%20eating%20disorder%20treatment%20center&utm_content=ACUTE%20Brand
https://www.beateatingdisorders.org.uk
https://anad.org
https://www.door2.com.au
https://balancedtx.com
https://www.gaudianiclinic.com -
When Bingeing Is Self-Preservation: Extreme Hunger
Image- Texas Monthly issue on BBQ (not sure which restaurant this is from)
For those who don’t understand the body’s primary goal of keeping us alive, bingeing might not make a lot of sense. But when someone has been restricting for any period of time, if the body senses that there’s an urgent need to offset any calorie deficits, it does a few things. One is the obsessive thinking about food. Another is focused on feeding others. And when the mental cues to eat are ignored, an almost out of body thing happens… it’s like a mandate to eat. For some, it’s a lot. For others, it’s uncomfortable if it’s not planned meal plan food. But the ultimate purpose is to get calories into a body running on empty. Extreme hunger is normal after a period of restriction.
Tabitha Farrar talks about the feast and famine responses in her book “Rehabilitate, Rewire, Recover!” (second edition is out now). It goes back to cave man days, when food was sporadic and seasonal. The people in some areas were more nomadic to help source food, but even if people stayed in the same basic area, people ate when food was plentiful to prepare for times of less food.
I know from nursing school that homeostasis is the goal of the body at all times. Physical hunger cues can be trashed with eating disorders, because they’ve been ignored for so long. Mental cues and insomnia are other ‘kicks in the butt’ to look for food- and again are often ignored. Extreme hunger is like a tornado siren on loudspeaker when the body must. Have. Food.
The fear of “bingeing”/eating and possible weight gain is incredibly hard to deal with. Anything that could trigger weight gain is avoided- until it can’t be. It is just trying to get calories into a starving body, no matter how long it takes, or how long it lasts. I’m still at a place where I resist any mental or physical hunger if it falls outside of planned food. I want that to change, and I’m also very afraid of it. Not being thin, or even ‘normal weight’, I have trouble justifying feeding what I see in the mirror. I still don’t feel I deserve food, and the chaos with the “expert” isn’t helping, since she was restricting what and how much I ate when she was in control over my food. When I get either mental or physical hunger, I panic.
But, it does help to hear multiple accounts from people on YouTube who had extreme hunger (often mistaken for bingeing) and that it didn’t last forever. Some gained considerable amounts of weight, and then settled into THEIR body’s healthy weight- which often has nothing in common with that stupid BMI chart. Extreme hunger can be physical or mental. Both are valid, and the current recommendations are to honor that by eating what your body is asking for, as much as it needs. By replenishing the stores, the hunger dissipates over time once things are again in balance with needs and energy requirements. From what I’ve read, the time this takes varies with each person.
While I haven’t read a lot about binge eating disorder, there are those who believe that the excessive eating is really a response to restriction in those folks as well. That does make sense. I’ve known several people who don’t eat that much to support their weight, but who describe not being able to control their hunger once it hits. -
Chronic Medical Complications From Restrictive Eating Disorders
Photo: mine
Decades of eating disorders have wreaked havoc on my body. It’s also impacted other areas, but for this post, I’ll be focusing on the medical issues. For this post, I’m just going to focus on what I’ve experienced. I will do another post on general complications.
IF you find these familiar, please get seen by a doctor who understands eating disorders, and don’t adjust what you do based on what is right for me. We’re all different.
Complications of eating disorders (restrictive in my situation) are not dependent on the weight of the person. That surprised me. But when I started looking at what my body had been through, and the stuff that is now chronic because of restricting, whether directly or indirectly, I was more than surprised. I have equated being overweight with being low risk for malnutrition from restrictive eating. That is not the case. I’ve either been restricted, or done the restricting, since I was 6-7 years old. My body and brain don’t remember “normal”. I’m in my early 60s. That’s a lot of time for damage to build. This doesn’t include the medical issues from starvation, though the dysautonomia touches on some of that… the difference with this post is that it’s been constant since 1996.
The chronic disorders I’ve developed include:
– Dysautonomia. This has disabled me to the point of not being able to work for the last 21 years. Being a RN was my main identity. Having that taken away has been very difficult. I can’t regulate heart rate, blood pressure, or temperature normally, which leaves me pretty much housebound. I don’t tolerate temperatures over 65 degrees, even when I’m cold. My body goes into vasodilation, and with dilated blood vessels, blood heads to my feet, and leaves my brain…. so I pass out. My body temperature is so unstable that I have to keep my head shaved to minimize heat retention. Hair is like having a dead animal on my head. My lowest recorded BP was 44/16, and my heart rate has dropped into the 30s for a couple of days (got me 5 days on a cardiac monitored unit). All of this had been known for many years, and NO doctor ever asked about eating disorders. Eating warm food, showers that are a bit too warm, being outside when it’s over 65 degrees Fahrenheit, and pain are also triggers.
– Diabetes. After an outpatient eating disorder program in Austin, TX in 1986, I was told ‘no diet products’, including soda. I didn’t drink much water back then, and started drinking a lot of juices and regular sodas, though my food intake was still restricted. I gained weight up to 300 pounds (I’m not close to that now). It was horrible. That led to diabetes, which focused on food/diet/weight, and triggered another relapse in 1995 when I was diagnosed with Type 2 diabetes, and had to focus on food amounts and types.
– Chronic Kidney Disease. Until my current nephrologist (a university med school professor) reviewed my history with me, other doctors assumed this was because of being diabetic, though my A1C levels have been good since 1995 when I got my blood sugars sorted out with diet alone (and a relapse into restriction). The real reason (based on never having had protein in my urine) is because of hypo-perfusion, which makes sense. With significant, ongoing restriction, blood pressure, heart rate, and blood volume decrease, making less blood available to nourish the kidneys. So, they stop working normally. This nephrologist also told me to be sure I got ENOUGH sodium to keep fluid up some (balancing act with kidney disease) to support blood pressure. I have to put electrolytes in the tube bag or what I drink. This has also caused elevated parathyroid hormone levels, which cause fatigue, blood sugar issues, and can cause weight gain. If you have kidney disease, please don’t adjust your sodium or other dietary limitations based on my stuff.
– Dry Skin. I’m a walking desert. My scalp, arms, and legs are especially gnarly. My feet look like I’ve dipped them in chalk. I have limited joint and spine mobility so getting lotion on my feet is rough (no pun intended).
– Degenerative Joint and Disc Diseases. Because of my weight during the “Coca-Cola years”, my knees took a beating (I was still working, as well). So did my spine. I’ve been in daily chronic pain since 1995, and while I had one knee replaced, I’m not eligible now because of a history of pulmonary emboli (blood clots in all three lobes of my right lung, and right pulmonary artery). My shoulders, hips, and other knee need replacing… but that won’t happen. It’s painful. A rheumatologist told me (with a degree of cold indifference) that I’d end up in so much pain I’d have to go to a nursing home at some point. Nope. Won’t do that if my brain functions enough to still argue. Just getting in and out of the car to go to an appointment requires a day to recover, and the day before the appointment to rest- so 3 days out of my week including the actual appointment day. I use medical cannabis to help with this, along with Rx medications, though I only take leftover pain meds when absolutely necessary so I don’t have to deal with another doctor just for pain. I have in the past, but I’m so tired of doctors, I could scream. This also messes with balance, so I have to be very calculated when I walk on unfamiliar or uneven surfaces, or get into the shower.
– Delayed stomach emptying. It got used to not having to do much, so now food just sits for hours. I’ve actually burped lunch from the day before the next morning. The last colonoscopy prep was hellacious. Nothing moved for about 7 hours. This has been difficult when trying to increase intake. The bloating is painful, and I often look like some sort of nearly-geriatric pregnant mutant.
– Swallowing issues. I’m not exactly sure when or how the swallowing problems started, but I’ve used an NG tube for fluids for over 3 years. I was off of it for about a month, but getting food in was very difficult. Before that, I’d sometimes have to pull food out of my throat, because I felt like I couldn’t breathe. I have GERD (reflux), a small hiatal hernia, ‘stuck’ swallowing at the back of my throat (need a lot of fluids), and a gastric outlet obstruction, which keeps food stuck in my esophagus until the ‘valve’ opens into my stomach. It’s pretty uncomfortable. I first started using NGs in the early 2000s for 2 reasons- it got fluids into me at home when my blood pressure dropped to the point of near fainting, and before I knew it had reflux and lost a lot of weight from not being able to eat. I get my own, and insert my own- which I do NOT recommend for someone who isn’t trained in how to insert and manage NGs.
– Muscle Atrophy. Because restriction was how things went in my house growing up (more on that in its own post), and until getting protein ‘goals’ when I started this latest round of recovery help, I had no idea how deficient in protein I’d been for most of my life. The tendons behind my knees (on the outer side of my lower thighs) had become very visible, even though the rest of me was well padded with fat. It was bad enough that I couldn’t walk through a building (still can’t) bigger than my apartment. I had to sell my childhood home because it was too far from the master suite to the kitchen. I have a wheelchair for distances, and get one at the front door of the hospital when I have appointments with my dietician, or if I have some annoying test or procedure done. My leg and arm muscles have improved, which is good- but it’s also a trigger since they’re larger now.
– Osteopenia. Softening of bones. This is a direct result of malnutrition and inadequate intake. Because of some sketchy calcium levels a few months ago, I can’t take calcium supplements, so with dairy being my primary source of protein (due to gout), I hope that’s enough.
– Sleep issues. The body is designed to keep us alive. The insomnia with restrictive eating is felt to be a response to inadequate nutrition, to ‘cue’ the mind into looking for food. Restricting overrides that, so dud sleep is the result.
– Trouble reading. During periods of time when i wasn’t actively restricting (still limiting intake based on my skewed view of ‘normal’), I would read 3-4 novels a week. I haven’t read for fun since chemo in 2010-2012 (acute promyelocytic leukemia), when I was restricting from not being hungry, and then since i’d gained weight, my oncologist badgered me to lose weight as fast as I could once chemo was over. He was completely apathetic about my history of anorexia. I was able to avoid a total relapse at that time, but with the trauma cancer and chemo cause to the body, I was still under-eating.
I think I’m missing something, but will edit if I think of it.