AtypicallyRecovering

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.