Photo- mine.
Being a freshman at a good state university was overwhelming, and made so much worse by my deteriorating physical and mental health.
I was also a fairly good student back in my high school, with many college prep and advanced placement classes that I was used to, so the classes weren’t too advanced when I got to college. I loved walking around campus, even though I was getting weaker and much sicker. But I was glad for the experience of dorm life.
I was taking 40 laxatives/day (10 for breakfast, lunch, dinner, and before bed). I knew every bathroom in any building I had to walk into. Diet soda was my main source of fluids. During the week, I didn’t eat more than an apple or 1/2 of a baked potato when I had to make an appearance at meals. I ran the 12 flights up to my dorm room after ‘dinner’ (I could get by not eating breakfast or lunch because of everyone’s different class schedules). I had PE at 8 a.m. several mornings a week, and it was a ‘self-study’ exercise plan, so I jogged to attendance, and then back to the dorm for a shower. At the end of the semester, I ran 2 1/4 miles in 12 minutes- and I’m not sure how I actually did it physically.
My roommate moved out because I was too quiet. I also didn’t sleep much, and would watch one star go across the sky outside of my window, while listening to mellow music on the radio.
I saw the therapist every week, and I’m not sure that poor woman ever heard me say more than “I don’t know” to every question, and I wasn’t trying to be a smart ass- I was truly baffled by what I was supposed to be telling her. I had to drop my class hours down to 12 (dad was not happy- he was paying for 4 years, not some marathon of classes for more than that) because I just couldn’t keep up. I ended up on academic probation because of being so weak, and struggling with cognitive function. But I couldn’t see the physical changes. I still felt too fat.
On weekends, I’d binge. It was typical to have a pint of ice cream, a bag of chips, chip dip, cheese, cookies, chocolate, ramen, and sometimes picking the cheese off of discarded pizza boxes in the trash room after everybody was in their room for the night (usually around 2 a.m.), to avoid getting caught. My diet soda was a lifeline, and I didn’t want anyone taking it, so I labeled it with “herpes” in the floor fridge that held 2 liter bottles. I could only fit 16 oz bottles in the dorm fridge. Nobody touched it. It wasn’t true about the herpes, but I always had my soda.
My mom arranged for the food service folks to make me a birthday cake big enough for the entire dorm floor (80 girls? Guys had the adjacent tower). The cake was HUGE. I was terrified. It also angered me, which was a really crappy response to my mom wanting to make sure I had a cake for my birthday.
My ability to concentrate on homework was shot. I got a D in history (hated history back then), and for the first time in my life, I was not doing well academically. I passed out regularly, and was carried down the stairs to the floor with the elevator (and stretcher) more than a few times. It always made me cringe to have one guy pick me up- I thought it would take at least 2-3 firemen to carry my perceived fat ass. But looking back at old photos I was too thin for my body type. I asked a dorm neighbor if the leotard and sweatpants I was going to wear to go skating made me look fat. Her answer ” I can count your ribs”.
I became very depressed by the effects of starvation, and spent a lot of time in weird places- the top of the stairs that led to the roof (nothing else was up there, so seemed like a good place to hide), or I didn’t leave my room for anything but classes- nothing social. I was sexually abused in the dorm lobby while others watched, by a guy who was determined to go out with me. His approach sucked (it wasn’t ‘major’ but made an impact). I had to meet with the resident director every week as well, so she could keep track of where I was on the roller coaster of chaos. By the break for Winter/Christmas, I was making plans to end my life. I’ve never had that kind of depression unless malnutrition and starvation were involved.
I lasted for that first semester (not sure how), with many trips to the health center, dietitians, therapist, MDs, etc… the second semester was a short one.
More on that next time.
Category: Eating Disorder Recovery ‘Alone’
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Anorexia and Campus Life
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How I Got To This Point Part 2: The Summer of Anorexia
Photo- El Arroyo in Austin, TX online photo
The summer before I started at the University of Illinois, I was working my second summer at a church camp I’d gone to as a kid for 7 summers (week long sessions). I loved that camp, and still consider it to be one of the most important spiritual factors in my life. Being outside and with nature is one of the biggest ways I relate to God. People lived what they believed, and it was fun.
I worked in the nature center the year before, as well as that fateful summer. The snakes, turtles, lizards, ferret, and raccoons were my responsibility. I was very self-conscious about my weight (as usual), and decided to use the increased activity at camp, along with calorie counting to get rid of what the ‘numbers’ said were wrong. I also felt I’d be largely unsupervised, which was important. That was back when women were supposed to be 100 pounds for 5 feet tall, and 5 pounds for every inch over 5 feet. That put me at about 135, which is NOT a weight where I look or feel healthy. I do not have a petite bone structure. I was also a figure skater for years prior to then, and my thighs were rock hard muscles.
I started off that summer by bringing my scale, calorie books, ‘expanding’ tablets to increase the feeling of fullness, and absolutely no common sense. Getting rid of the weight was THE most important thing for me to accomplish before having to compare myself to a university full of students. I wasn’t fat. I did have weight to lose, but I went off the rails. The diagnostic criteria for anorexia nervosa was different then. It counted the % of weight from the starting weight as the weight ‘rule’. I didn’t know that when I started out, but found out later (another future post). I lost a total of 1/4 of me in about 2 months. Now, it would be atypical anorexia. Face it- starvation is starvation no matter the size of the person.
What I hadn’t expected was an 88-pound anorexic with bulimic tendencies to be assigned to the same set of cabins I was, and became my guide to self-destruction. We became friends very quickly, and she taught me about laxatives for purging, the importance of exercising like a maniac, and how to avoid eating and nosey (concerned) coworkers. I woke up the first morning that we had campers (there was a week for staff only to get the ‘ins and outs’ of camp life before the kids arrived on Sunday). I ran down to the barn and back (2 mile round trip), and had an apple for breakfast. I felt great. I also was drinking about 6 cans of Tab per day (precursor to Diet Coke).
I lost 17 pounds the first week, and one of the counselors who went on “adventure camping” weeks (biking, river rafting, etc) didn’t recognize me when she got back the following Saturday. When people from the church I attended back then came to drop off their kids for a week long camp session, my mom would send ‘care baskets’ with body wash, quarters for laundry, and with the weight loss, a pair of rainbow suspenders to keep my jeans up (rainbow suspenders were a ‘thing’ with no other meaning than Mork wore them on “Mork and Mindy”). I didn’t feel any different, but got a ‘high’ from seeing the numbers drop on the scale.
The head honchos at the camp (direct supervisor, camp nurse, and main boss over the campus) knew something was wrong fairly quickly. They threatened to keep my paycheck unless I ate, but legally couldn’t do that. Over the next 4 weeks I lost another 23 pounds, and the nurse from the year before was in the area, and the camp folks sent me off with her on nights off, to talk some sense into me. She tried hard. But I was already hooked.
My folks came up to visit me (first time they’d done that, so I’m not sure if they were notified of the weight loss), and actually talked to me more than when I’d been heavier. Coincidence? Maybe- but for weight obsessed parents, I found it disappointing that I was ‘worth more’ if I weighed less. That was a big reinforcement of the determination to drop weight. And aside from the suspenders, they didn’t mention my rapid weight loss.
Over that summer, I lost 45 pounds altogether, and just had a couple of weeks at home before heading to the University of Illinois in Urbana-Champaign. A third of my hair had fallen out, I was freezing all of the time, I’d turn blue, and other students on the dorm floor knew something wasn’t right. When they caught me after I’d gone to the water fountain to fill my water mug, I was in a light winter coat, jeans, and 6 pairs of socks in very humid central Illinois, in late August. My feet felt cold through the socks. They called the resident advisor (more senior student for one dorm floor, for those not in the US), who called the resident director (over the whole girls side of the dorm), and they shipped me off by ambulance for a night in the university health center hospital. I had to talk to a psychiatrist in the morning. I thought they were nuts. I wasn’t thin enough yet. But, the psychiatrist disagreed, and the diagnosis of anorexia nervosa was given. In order to stay in school, and not have to tell my parents I was in trouble, I agreed to the therapist. I saw her for the entire semester, and early part of the next one.
More on the University of Illinois “routine” with how anorexia impacted me in another post. -
How I Got To This Point Part 1: Childhood Diets
Photo: mine; me, age 5 1/2 (summer before diet bribes started)
I’ve been a problem eater since birth. I was put up for adoption, and before I could be placed in my parents’ home, I spent 9 days in the hospital in 2 cities because I didn’t like the hospital formula. They got that sorted out, and my folks picked me up when I was 10 days old in the 3rd city I’d been in by that age. My folks were not horrible people. They were fallible humans, like most of us, and for the most part, they did the best they could. I found my biological family decades ago, and have a great relationship with my biological mother, as well as extended family. My birth mom is probably my best friend. When I found her, I found the rest of me.
I didn’t have weight issues as a kid. Photos show a very normal weight child, who was active and healthy. Then, my mom decided to start bribing me (with cash and candy, which was stupid) to lose weight. I’m not sure where she wanted it gone from, but she never let up. A typical packed lunch was one slice of bread, a boiled egg, maybe fruit, and milk from school (I hated milk from a very young age as well, so got the gnarly orange drink instead). I had a key to the house when I was 6, and got myself home from 2nd grade to get lunch at home, often soup or a sandwich, and then locked up the house and walked 6 blocks back to school.
My mom and dad were always on diets or restricting food for the whole family. It was typical for 3 of us to share one 15 oz can of mini ravioli for dinner when I was in high school. If they had something I didn’t like, I either ate it, or went without. When we went to McDonald’s for report card day or when we travelled, I was expected to get the smallest/ cheapest things on the menu… the prices when the McD’s reward started, for the entire regular small hamburger, small fries, and small Coke, was 69 cents.
I was a figure skater as a very young kid (4-5 years old), and took it up again in 7th grade when a new rink opened up closer to our house. I LOVED skating. I felt free at the rink, and my coach was very kind to me. My mom would weigh me before lessons, and if she didn’t like my weight, she refused to pay for the lesson. I’d literally run around the neighborhood to sweat off some weight because I was desperate to get out of the house, to a place where I felt like I was enough just being me. My coach knew I was on weird diets, and never supported them. I found out years after I stopped skating, and had moved away from home, that I had been scouted as an ice dance partner. I knew random coaches approached me during public sessions and asked me to do various footwork sequences, and I did them without knowing they were Senior level test patterns. I just thought it was fun.
The diet mentality never stopped. My mom was never as interested in what I was doing as when I was on a diet. She’d buy whatever food the diet called for, no questions asked. And, I’d lose weight until the diet was over, then gain it back. Diets don’t work. They screw up metabolic rates by putting the body into a ‘famine’ mode, so it hangs on to whatever it gets. The summer before going off to the University of Illinois, I developed full-blown anorexia nervosa (more on that in another post).
I did diet competitions with some very thin twins I’d known since infancy at the church nursery. I always won because I had more to lose. When figuring out my average ‘non-dieting’ calories growing up, it came to about 700-900 per day. I was supposed to grow and be healthy on what I was given to eat, and that wasn’t enough, but I didn’t know any different. I knew my friends’ families didn’t eat like we did, but I also knew better than to complain. That wasn’t allowed. I was instructed always to say I was fine, no matter what.
I started babysitting regularly at age 11 (I was a responsible kid who knew how to handle newborns), and used that money to take my bike to the store to get fruit roll-ups (before they came in boxes, but were wrapped in cellophane), crackers, or anything to help fill me up when I got hungry. Snacks were not allowed, so if i made something at home it had to be from ingredients nobody would miss- like flour and water ‘crusts’ with ketchup with oregano, and microwave it. Gross, but got the job done. Food was something to be ashamed of wanting, or even needing.
I’ve been learning what are normal amounts for the first time in my life in my early 60s. It’s been physically miserable, and my dislike for food has grown because of the discomfort. I haven’t been asked to eat a lot- it’s all a ‘threat’. I was raised to have an eating disorder. It wasn’t the intent, but it was kind of a normal reaction to an abnormal frame of reference. There are things I like, but wanting them is “bad”. I know logically that food is just food, but because of zippo self-worth, I don’t think I deserve to enjoy what I eat… it’s simply a means to an end, and not very enticing because of that. I want that to change. -
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. -
OK. Time to Start DOING Something
Photo: mine
OK, so it’s time to start doing things to move forward. I won’t lie- I’m not even sure where to start, but I know that I have to come up with something that will work for me, and doesn’t seem forced (other than making sure I eat what I’m supposed to, but not be rigid). I have some guidelines from the dietician i’ve seen for many years that include the restrictions I have because of diabetes, gout, and chronic kidney disease (from hypo-perfusion- my blood pressure and heart rate during acute restriction didn’t ‘feed’ my kidneys). I have a number of other chronic medical conditions, but these are the ones I have to deal with in regards to food. It’s a pain in the butt, and does nothing to help me not be focused on ‘the numbers’. I’ve got ideas on what to work on, but I need to get some specific goals that aren’t overwhelming.
People talk about fear foods all of the time in eating disorder recovery videos, and my ‘thing’ is more about the fear of portion sizes. I’m willing to take a bite or two of a lot of things, but entire servings freak me out. At one point, during the relapse of 1995-1996, eating an egg was ‘bad’ because it was a ‘whole’ egg. IF I was asked if I’d eaten I’d think that I’d had enough if I tasted anything. One spoonful of something was ‘enough’. I know logically that isn’t right, and I’d never support someone else doing that. This all started when I was 6-7 years old, and my mom literally bribed me (with cash) to lose weight when I wasn’t remotely fat. I got the very clear message that eating wasn’t something to indulge in, and that eating more than one container of yogurt for a meal was gluttony. No crackers or fruit- just a cup of yogurt. It stuck. That was more than 5 decades ago. Yup… I’m bordering on ‘geezerhood’, and still dealing with a stupid restrictive eating disorder.
Ordering from delivery menus is a nightmare. It can take me 3-4 hours to decide on something, and by that time there’s a good chance that the restaurant will be closed. Then I fall back on protein bars or protein water via the NG tube I’ve had in for most of 3+ years in order to get enough fluid in for my kidneys to stay interested in functioning at all. I have a few places that aren’t too horrible, and the idea that someone else put the stuff together means I can’t screw it up, though it’s also terrifying not to know exactly what’s in restaurant food. If I can’t find the nutritional info, chances are, I’ll panic and move on. Individual frozen entrees are also helpful now… but it took about 2 years to be able to eat those.
I think that instead of fear foods, I need to look at fear ‘situations’. Like if I order something without looking at the nutritional content (except for carbs to know insulin dose, grams of protein so I don’t go over my limit, or type of protein so gout doesn’t flare up). To be able to order something just because I like it has become completely foreign. I am so into numbers fitting into the food log that I don’t bother with just wanting something. That needs to change. I can finagle the amounts to avoid any health issues. To order something because it is something I either want to try or used to eat now and then would be a big step. Even if it’s just adding it to my grocery list- it doesn’t have to be delivery food.
Something else I need to work on is not panicking when I feel physical hunger. I hadn’t felt it for a LONG time (I’m talking at least 12-15 years), and it’s coming back. Not amused… but I also know that my body is trying to work again, and it’s supposed to work out that if I feel hungry, I eat. Sounds simple to most folks. That is another nightmare situation. I’m terrified I’ll just keep eating, and I have legitimate weight to lose. I’m not a candidate for a reality show, but I’d feel better with less on me. My joints are a mess, and it’d help with pain if I dropped weight. But I have to do it in a way that doesn’t mess me up more.
There’s also mental hunger, which has been around for a long time, and I very rarely give in to it. But it’s a survival thing- the brain is focusing attention on what the body needs after periods of restriction (this latest more intense restrictive period has gone on for about 4 1/2 years- the longest yet). The preoccupation with food was also seen in the Minnesota Starvation Study after WWII, when Dr. Ancel Keyes studied the impact of restricting food in otherwise healthy conscientious objectors (who wanted to contribute something). They all became fixated on food. They didn’t have eating disorders… they had a deficit of calories and nutrition. So, I need to figure out how to deal with that in a way that doesn’t make me more freaked out.
I know where I need to change things. Now I just need to start doing something. I need to move forward.