This post continues the saga of our battle against ED last year. (if you missed the first post, click on Eating Disorders Suck!)
In September, 2013 my daughter (hereafter referred to as ‘Guzzy’–the name my Alzheimer’s stricken mother coined when struggling to come up with her real name) and I linger in Minneapolis after her discharge from the hospital to hang with my oldest daughter and family; which includes baby twin girls–who served as a joyful distraction from Guzzy’s illness. . We stayed with them long enough to participate in the Minneapolis NEDA fund-raising walk and for a few outpatient appointments, before heading home 250 miles away.
While driving home, I was stricken with the most horrible stomach flu of my life, stopping at every rest stop along the way. Within 24 hours Guzzy is stricken too. There’s nothing like a full-blown case of stomach flu to throw a re-feeding program off kilter! However, we powered through it, and once we were both healthy again, we set to the re-feeding task in earnest.
We had many bad days; the ED fog would descend and she would sit and stare at her food, sometimes crying silently. Her pain was real. I read to her to distract her, which sometimes worked… sometimes not. Guzzy was not the type to scream, rant and throw things (some are); instead she turned her pain inwards–which was heartbreaking to watch. The meals she absolutely couldn’t eat, we substituted Ensure or a smoothie. It would have been the easier way out to ‘cave’ to the ED and let my sweet girl simply leave the table without consuming the needed calories… but I loved her too much to do that. We were in this for the long run.
I would plan, shop for, prepare and serve three meals and three snacks a day – maximizing the calories, while trying to keep the food footprint to a minimum, since it was so physically and emotionally difficult for her to eat. Lots of smoothies, and recipes with calorie-dense ingredients.
Guzzy had many uncomfortable and downright painful stomach and digestive ailments. This triggered a series of medications and treatments since reducing the intake causing the distress was simply NOT an option.
Guzzy and I were joined at the hip for weeks: Our lives were a blur of sleeping,cooking, eating, cleaning-up; intermixed with a variety of low-key distracting activities. We did lots of puzzles, played hours of cards, and read books aloud to each other. When Guzzy slept, I planned meals, went grocery shopping, cooked and cleaned up after meals. Our days were a blur in the same sense that days with a newborn baby are a blur.
We had OK days and we had bad days. We had days where there would be a crisis of some sort, and I’d be convinced I was doing everything wrong. I would reach out to the therapist and/or my virtual network (the internet is a wonderful thing) of other ED parents; and the message was always STAY THE COURSE. YOU ARE A BRICK WALL AGAINST THE ED. DO NOT GIVE IN TO THE ED. Eventually the OK days started to outnumber the bad days.
I was communicating with Guzzy’s dad (my ex) on a daily basis, and we had frequent family meetings to discuss progress and how to handle the next steps / challenge. After several weeks Guzzy started spending some time with her dad. Stepdad Dan was also very supportive
After the initial 4-6 weeks of refeeding, Guzzy was healthier and her medical issues, including her digestive issues, started to subside. We still had some bad days, but they were the exception. I described her status as ‘over the hill, but not through the woods’. We would have 4-5 good days, followed by a horrible day… rinse and repeat.
I’m a little tired from just reliving this period. It was intense. If you’ve gotten this far… stay the course ad read Eating Disorder Suck Part 3 , it gets better!!!