Chronicles of the Digestively Challenged
It has been a trying week for me. A sudden and severe onset of Strep Throat had me bed ridden Wednesday and Thursday and then I developed a stomach ulcer of still undetermined severity as a result of excessive ibuprofen (ab)use. Neither the strep nor the stomach pain kept me from travelling to the beach for a friend’s wedding. Where I continued my suffering in a more public venue and wound up in the Urgent Care. Travelling is always difficult because of my gluten-free diet, social gatherings can be emotional because of the emphasis on food and to top it all off, my body was staging a revolt of epic proportions. The stomach pains came in scorching waves which increased in intensity with hunger. Combining the lack of available gluten-free foods with the fact that a near empty belly was excruciating with the fact that I feel like a pig when I have to eat every 1.5 hours left me absolutely depressed. It doesn’t take much these days to stir up the pity party about how I fucking despise food. I hate everyone talking about it and eating it and enjoying it and I can’t eat anything but dry lettuce because I’ll have explosive diarrhea in the shared hotel bathroom if I so much as look at a french fry or marinated piece of chicken. “My body hates me.” ” It doesn’t work right. ” “I’m just allergic to food.” “I never want to eat again as long as I live.” And then it starts crossing the lines from frustrated Celiac thoughts to eating disordered thoughts. The hopelessness, the frustration, the grief that I’ll never be able to have a normal life. And for some that may sound like an exaggeration because lots of people have food allergies and what’s the big deal about not eating bread? But at this point I feel like I will never again be able to eat food prepared by anyone but me. I will undoubtedly have explosive diarrhea the morning after I spend the night with any new love interest (which leads to anxiety which means I am unbelievably anxious for approximately the first 6 months of all relationships that my stomachwill make some other worldly noise or I will stink up a bathroom). I will never be able to travel without a grocery bag of food (which totally fucks with my eating disordered voices). I will never be able to be spontaneous. I will never be able to eat Thanksgiving dinner prepared by others.
I am sorry. I am just really downtrodden about the whole thing and I’m not totally sure why it’s coming to a head lately.
No wonder it tastes so good…
Several of the blogs I read are of lovely ladies recovering and using their blogs to, amongst other things, document the scrumptious foods they eat. Well I was inspired to add some of these foods to my grocery cart today, including a tea made by Celestial Seasons called Sugar Cookie Sleigh Ride – a holiday exclusive flavor. I had seen it on several blogs and thus was so motivated to find it that I ventured into three stores today. Let me tell you, I thought it was well worth it. I had two cups of that stuff to warm me up on a blizzardy Vermont day after shoveling the driveway. J came home and I showed it to him and proptly flipped to the ingredient list in search of the secret to its deliciousness. GLUTEN! Ack!!! Gluten in tea??!! Yep. Apparently to make it taste extra cookie-ish they add barley. You know what I have to say to that? Bah-fucking-humbug. No more delicious tea for me. And a bit of a yucky gut hangover from it. Moral of the story? Never stop checking labels. Even when you feel that you are a Celiac pro. Don’t get cocky. Just check the g.d. label.**
In other news. I had another successful day of eating, by which I mean that I feel really uncomfortable right now. I again had about 3 episodes of “urges” while eating but they passed. I swear starting the day with breakfast right off the bat is part of this key to success. I have always been one of those people who wakes up absolutely famished. And lately have been hop-skipping right through breakfast with only coffee in my belly. Not only does it start the day with my crankypants on, it definitely sets me up to eat more than I’m comfortable with or faster than feels okay later in the day. For anxiety’s sake I’ve been sticking with the same thing every morning. I can handle a little more flexibility and choice later in the day as long as I fuel my fire when I wake up. So a piece of toast with PB, or cashew butter or cream cheese and a small smoothie it is. Low volume, high nutrition (exactly the opposite of what women’s magazines tell you to do). I get what I need to start the day but don’t feel freaked out by the feeling of it in my tummy.
The thoughts are there to restrict tomorrow and it certainly is easier when I’m at work. But despite twinges of discomfort in this very moment, on the whole I felt physically, emotionally and mentally stronger this weekend. I snow-shoveled and went to the gym and ate healthy things. So I’m trying to reassure myself that I won’t have to exchange gifts for a size XXL anytime soon.
I had an interesting moment tonight while parusing a friend’s pictures on Facebook tonight. I worked with him at this fabulous summer camp for several years and the place is really the epitome of happiness and comfort in my own skin. It’s on the top of a mountain in my home state and is filled with the most authentic, energetic and loving people I’ve ever known. So this picture was taken what I believe to be the summer after I graduated from college. My senior year of college was the one time in my life when I actually gained some weight. Nothing unhealthy but it was probably the only year that anyone would not call me “petite” or “tiny” (words which I know realize I have incorporated deeply into my identity – how shallow. but true). Here is this picture of me and a friend, arms around each other , huge genuine smiles, skin glowing from suntans and peace. And all I could think about what how fat I looked. How I couldn’t believe I let myself get that way. How that’s the reason why I need my eating disorder. The strength of my visceral reaction of disgust at my own appearance makes me want to cry. I wish wish wish that I could see past the round cheeks and get joy from seeing my smile. I don’t judge others so harshly. I look at my yoga teachers with curves and think how they look healthy and confident. But I see myself with curves and it repulses me. Definitely need to talk to Bree about this. I want to know why my internalized image of myself is so thin and why it is so abhorrent to see myself any other way. It really rattled me and I’m glad I saw that picture a few hours after I’d eaten dinner.
**and yes, checking labels is something I wish I didn’t HAVE to do because it has a tendency to stir up some disordered parts who want me to restrict. but it’s just a necessary part of my existance. the whole eating disorder and celiac connection is so frustrating. for example – having an eating disorder often makes one paranoid that other people are watching what you eat, judging what you eat. well, in my case, they often are. At least when I eat around unfamiliar people (perhaps why I try not to do that so much). I got so “skilled” at restricting my food intake around the same time that I officially had to eliminate certain wonderful, delicious foods from my diet (bread, pasta, brownies, cookies, pancakes, rolls, pita pockets, crackers, etc…..). I became obsessed with food right around the time that I kind of had to for my health. Certainly I can’t be the only one in the universe with a similar experience of an ED exacerbated or triggered by Celiac or another dietary restriciton?!!
Soliciting medical advice from experts in the field…
no not the medical field. the eating disordered field. Alright, so this post is going to feel much different from my usual thoughts, feelings, daily goings on…
As I’m working on all the head games and emotional issues, one of the side effects has been a recurrence of my lovely “symptoms”. Restrict, eat (a perceived binge but not textbook classification), purge, cardio exercise 1-2 hours per day.
I usually don’t worry too much about the physical effects of my disordered behavior. However in the past week I’ve been increasingly concerned and am turning to those of you who’ve been through this for some advice…
I’ve had a few days of Celiac symptoms acting up – which means increased…well, bowel movements. I think that’s setting some of the stage for feeling physically like crap after purging. Usually when my Celiac gets flared up I don’t absorb my food as well because my gut is inflamed. So add to that repeated purging and I’m getting a little maternal towards this “temple” of my body.
The thing I’m really worried about are the electrolytes. I know, I know my dental enamel and esophagus are suffering too. But it’s collapse or heart issues that are scaring me right now. Should I be having my potassium levels monitored? How frequently? I’m purging 1-2x every day with occasional weekend days of 3-7x. Lately I’m feeling swirly and unsteady on my sea legs after my little bathroom olympics. Maybe it’s nothing. Maybe you have to be purging in the double digits every day to worry about electrolytes. But I need some reassurance here.
I’m asking you guys because I’ve heard all the horror stories about medical professionals not being, well, sensitive to the plight of the eating disordered. But everyone in group tonight was talking about their experiences and I realized I have NEVER been under any medical care for my ED – only therapy. Should I be under some sort of supervision?
Also, aside from the obvious cosmetic drawbacks, any real danger to the swollen salivary glands?
I ask not for permission to carry on my merry way on the road of self-harm. Rather so that I can be as “safe” as possible while I’m battling this fucker.
thanks in advance! -nb
Dear Food,
You’ve been around since the beginning of time. Even the single-celled amoeba-type aquatic life found itsy bitsy food particles in the oceans before the whole Darwinian survival of the fittest reality show premiered. I know that you are made of complex amino acids and fats and carbohydrates and chemistry that at one point in my life I understood (or at least memorized and regurgitated in order to receive a degree in Health and Exercise Science). I know that you bring life and sustainance to this world. That millions are starving for you. That you are inequally distributed in this world. I know that at the core, you are good. But you’re really bringing me down. You’re all I think about. I hate you and need you and I hate that I need you. I crave you and am repulsed by you and am repulsed by my cravings for you. I have days where I am the master of the quality and quantity of you that goes in my mouth (or, more aptly, what doesn’t) and others where you seem to force your way in…and then I force you back out. We are really not getting along, you and I. Our relationship has been a long and difficult one. My mom frequently describes my feeding problems beginning with breast feeding, then finicky cranky eating in toddlerhood. And Lord then came the decades of digestive woes which led me to countless gastroenterological diagnostic procedures. Turns out, food, that much of you was poisoning me. Then came the gluten-free diet of deprivation and anxiety and questions and comments and pity from others about what was on my plate, what was not and why.
I’m really sorry to say this because I know you have the best of intentions. But I am just really, really frustrated with you. Angry, even. I need a break. I don’t want you in my life anymore. I wish I could just quit you – oh that it was that easy. I know that we just need to come to some sort of compromise and live communally in peace and harmony. But damnit you make it difficult.
Sincerely,
nb’s eating disordered brain
I wish I could do it without rules
Yesterday was.start.to.finish.horrible. I had such grand plans for a great Snow Day. Turned out in addition to being a s’no work day, it was also a s’no food staying in my belly day, s’no way I can stand up without being dizzy day, s’no way I should be on this treadmill right now day. And honestly, the first day I worried about acute health repercussions to my purging and restricting.
Thursday I ingested some gluten and my sensitive Celiac gut reacted, well, with some GI distress (I’ll spare you the details). But this always means that I stop absorbing the food in my gut, make many trips to the el bano, and wind up very hungry and thirsty. And in the lovely land of Bulimia very hungry leads down a destructive road. Yesterday was another one of my purging lows, in frequency, in intensity, in wobbly after effects. And because I was snowed in, there wasn’t much I could do to distract (this is an exaggeration, there were things I could do but felt so much at the mercy of my disorder that I forgot about them). At some point in the afternoon I crawled into bed and vowed not to get out until J got home from work (4:00, usually). By 5:15 I was panicking and hungry again and praying that he would show up soon so we could go to my favorite restaurant and get a crepe for dinner and keep it down. I could NOT eat another meal alone in this god-forsaken apartment. Phone rings. J is working late – until 7:30. Groan. You can imagine how dinner went (other than alone and in this god-forsaken apartment).
But hang in there, it’s not all doom and gloom. The road may be curving a bit, mainly because I felt so fucking scared and sick yesterday. Possessed, in fact, by this disorder. I know on so many levels it feels like it gives control, but this is a myth (at least for me) and there are those rock-bottom moments when you realize you are completely controlled by IT. Yesterday I felt like the only way I am going to have control of my life is to not have my disorder in my life. If I allow it to be there, even in small doses (what I like to call “dabbling” in my behaviors) – I guarantee myself that I will have these days, weeks, (hopefully not but possibly) months where it is my master and I its slave. Days where the moment I see J’s face I am a puddle of blubbering tears. Days where all there is to do is take a valium and go to bed at 8:00.
That Valium induced sleep lasted until about 3 a.m. at which point I began hatching a plan. Just for today. I’m not going to worry about a week from now or a month from now. Today, Saturday December 13, I have a meal plan in writing and stuck on the fridge. At the bottom of the meals and snacks listed are some rules.
-No eating on the couch. Sit at the table.
-Only eating off plates, not out of packaging.
-No multi-tasking. Pay attention to eating and how you feel (emotionally and physically).
I’ve tried meal plans before – a few weeks ago I had a few good days as a result of planning what I’d eat and sticking to it. My major concern is that it is ME that created the plan. So I’m just trusting that it’s coming from the healthy/recovery me and not the restricting/want-to-lose-weight me. At my absolute lowest in ED behaviors I kept very rigid (and unhealthy) meal plans and obsessed about them. I went to a dietician post-diagnosis with Celiac (in her defense she had no idea that I had an eating disorder) and holy shit – it fueled the fire BIG time. Part of me is wondering, though, if it would help to have my diet planned by someone without an eating disorder. Probably. But I’m terrified of that. Maybe should talk to Bree about it.
Next to the meal plan on the refrigerator is a big sheet filled with “Things to Do Instead”. Including specific tasks related to housework, being outside, playing with my dog, connecting with others (email, christmas cards, phone calls and a list of all the people who ARE in my life and WOULD at least chat with me about bullshit and Christmas and anything besides purging), relaxing.
My goal: To have a “good day”. Translation: To eat what my body needs, not purge, exercise a reasonable amount. Bonus (but this may be setting the bar WAY too high): Not be excruciatingly anxious and difficult to be around.
I really wish I could do it without rules. I wish I could just wake up, smile at the sunshine glinting off the snow and go along my merry way of normalcy today. Just set the intention and have it all pan out. But I just know that, right now, that doesn’t work. It did when I was 4 months into recovery. But not the day after one of my worst days ever. I need the structure. I think about the stories I’ve heard of residential treatment. It’s not like you walk in, they pat you on the back and congratulate you for making the commitment to recover and then send on your way to figure out what to do all day. They schedule your day and plan your food and keep you busy and take a lot of the choices and decision-making off your back (at least in the beginning, from what I hear). So I guess what I’m doing is somewhat aligned with that. I have the best intentions for today and it feels like it is ME and not my disorder choosing this path.
Off to shovel snow with a slice of toast with PB and a little smoothie in my belly. Off to shovel snow with a little bit of pride that I did it – one meal of the day. Off to shovel snow with the fear of disappointment if this day takes a turn for the worse.
*one last observation. That last line about fear of disappointment – it makes me want to beg, plead, bargain, pray with some power in the universe (not necessarily spiritual) not to let the disorder take over today. But acknowledging that feels like it’s taking the power away from ME to keep today on track. So is it better to rely on myself (thereby putting pressure on myself) to battle this today or to turn it over to the universe to keep the disorder at bay. Or maybe a bit of both – I’ll do my part today and hope the universe can give me a break?!
A Not-so-Brief History
I’ll be honest in admitting that the past 2-3 weeks have been more “eating disordered” than any in the past year-plus. But they’ve felt different. So now is as good a time as any to venture down memory lane. As an aside, I have far more readers than commenters so maybe this story will resonate and someone with more ED experience than me can chime in with their thoughts.
My eating disorder history is complicated by what has now been diagnosed as Celiac disease. I think the largest part this played revolves around anxiety around food, hunger and my stomach in general. I used to feel like my stomach (the actual organ….not a “belly”) took up 95% of my being. I was STARVING all the time and ate large meals or snacks every 1.5 – 2 hours. I was horrendously embarrassed by this because obviously it doesn’t fit nicely into teenage girl culture to be worried about where your next hamburger was coming from. I was always thin, at times in high school concerningly so. People commented, doctors investigated and parents were involved (each in their own unhelpful and fucked up way), and I basically got a lot of attention.
Fast forward about 10 years and I was confirmed to have Celiac disease – an autoimmune disorder that manifests as an allergy to the wheat protein gluten). During those 10 years, my mentally ill father (undiagnosed and untreated) proceeded to get more and more, well, crazy. I was a perfectionist overachiever with lofty prospects for schools, careers, relationships, etc. I was going to grad school and making solid A’s, had a boyfriend who I loved and hoped to spend the rest of forever happily ever after with and took up running. When grad school ended, the relationship ended and the running increased – as did a recreational interest in dieting. Over the next year and a half the running increased, the dieting became true restricing and I started a relationship with a Navy SEAL. The significance of this is hard to put into words – I don’t think that outside of the ED community you can find a more overachieving, self-punishing, controlling and compulsively exercising people than that crowd. What was once a “normal” SELF magazine reading, fat-free eating runner overnight became addicted to purging. Seriously, it was an instant take. I have NO idea what spurred the idea to do it the first time but I think my life was pretty ED-ridden at that point and I was left alone for the millionth time while he was overseas. I was hooked. Unlike a true bulimic, I wasn’t binging and purging. Restricting and purging was my M.O. Merely eating a meal a day and purging. And compulsively exercising. So, needless to say, the weight came off my already small frame fast. That was a year and a half ago. Onset at the age of 26. Which I gather is kind of late. I think my disordered thoughts before then could be chalked up to “normal” female obsession with weight, etc.
Anxiety, which has plagued me for a long time, also ramped up at this point. I was checking obsessively and grew increasingly rigid about time, numbers in general (i.e. tracking heart rate data, calories in and out, hours of sleep, etc.), and visual appearances (things lining up or “looking right”). I couldn’t think straight, obsessively cleaned, rewrote Post-It notes at work because my handwriting wasn’t perfect and had Excel spreadsheets of nutrition facts for all foods in my pantry for data keeping purposed.
Within 2 weeks of beginning to purge, I sought help. I was terrified. What the fuck was I doing – it was gross and totally “crazy” in my book. But I was still doing it. I was sent to a “specialist” who I saw 2x a week for CBT. Her husband was my prescribing doc and put me on Prozac. My dose went from 20 mg to 40 to 80 within a few weeks. I had tremors, insomnia and general yuckiness but the obsessions decreased, and my general pace of thinking slowed down with less “hooking” thoughts.
After about 4 months of ED, I moved to Vermont with Navy SEAL boy and found out that my dad (one of my major triggers to begin with) had cancer. Somehow that pushed me from one extreme to the other – from sickness into recovery. Sounds great, right?? But in retrospect I’m not sure it was an authentic recovery. More of a “new” set of rules. I didn’t purge the day I found out my dad was sick. I had a panic attack and my then-boyfriend found me in the cemetary across from our house with an empty bottle of wine and a half-smoked pack of Parliaments. I didn’t purge for about 8 months straight. SEAL exited the scene within weeks of the cemetary incident. I was alone but manic – I threw myself into yoga. I met J. I was totally on-board with recovery – blogging on my old site about how great life was and about how spiritually grounded I was. I went off Prozac in June. I began making huge gains in therapy after meds were out of the picture.
Enter ED, stage left. I’m not sure how or why. But I do know that it feels different this time. I’ve been honest about this with my therapist… this time around feels less compulsive, less “but I can’t help it”, less about the numbers. As I told Bree, I don’t need Excel spreadsheets to tell me whether I’ve eaten enough. It feels more depressed and hopeless. It feels more like a white flag of surrender to life. I adore J and on some days can see us happy forever with kids … (“I dream of children. Watch ‘em run around in the front yard…from the front porch of our home” – from my favorite song of The Avett Brothers). But lately I just don’t know if I can fight this every day forever. I don’t know if it’ll get better. I worried aloud to J tonight (after watching him snuggle with his 15 month-old nephew again) that I don’t know how my ED brain would react to a pregnant body.
I tried to explain it to J last night on our ride home from dinner (he’s now totally monitoring everything I eat, or more accurately – don’t eat… I can tell) – “it’s not like a fat person trying to lose weight. it doesn’t take effort. it is the absence of effort. if I stop the effort, I just relax into the weight loss. it’s so easy and powerful.”
So that’s it… in a nutshell… where I’ve been…. where I am. I’m scared. I know I’m not okay. I think I’m doing what I need to by joining group, by having honest dialogues with J about things, and by generally being aware. But I’m scared that it’s not enough. It really sucks when the thing you are most scared of is entirely in your own brain. I’m in my first relapse. Sure, I’m in my late twenties but I’m a newbie by most standards to the world of ED. I had a rapid onset, a sudden recovery and now it’s back. Maybe I should get back on meds. But that feels like a band-aid. When I was on meds I wasn’t able to access those really dismal, hopeless sad parts of me that are currently benefitting from therapy. I was numbed out. Nice, but not productive in the long term.
Here I am. Not knowing what to do. I start something new Monday – a therapy group based heavily in Yoga and Internal Family Systems Therapy. Maybe that’s enough newness and I should just abondon the whole job thing for awhile. Stay with what I know. Maybe I should go to part-time for awhile at work to focus on recovery. Maybe I’m not ready for recovery again – need a break from it.
Maybe I need insight from others.
