Anosognia

Anosognia- in simple terms, lack of insight, not having knowledge that a person has an illness. In eating disorders, a person is usually high-achieving and perfectionistic in other areas of their life; school, work, extracurricular activities. For example, an anorexic sees herself as fat, even when severely underweight. Or that they are simply dieting and any concern expressed is because people are trying to make them fat. This can lead to treatment occurring only once it is physically apparent. However, a person can die without ever becoming emaciated, or even underweight. In fact, bulimia and binge eating disorder sufferers are typically a normal weight or overweight. And practitioners who are not experts in eating disorders often perpetuate the sufferer's anosognia.

"But your weight isn't THAT low."
"Don't worry; you can exercise that much as long as you eat a little more."
"How much do you weigh?"

I liken this to waiting to treat stage II cancer until it gets to stage IV. And in the eating disorder world, stage IV might mean suicide or a deadly electrolyte imbalance, not an emaciated appearance.

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I am doing well. I will first give myself credit for doing well, and then follow it with my possible anosognia.

I did not weigh myself for eight days. I also ate my meal plan for several weeks. It did occur to me, during that time, that life is a lot easier for normal people. I ate some things I usually don't, and I realized I kinda do miss out on stuff a lot of people take for granted. By this I don't necessarily mean eating specific foods.  More like being able to share a family meal in a restaurant, or having ice cream with my kids....the whole social aspect of eating. Because anorexia is an incredibly isolating disease. It destroys one's connection with people.

And then the guilt crept in. Not just that, but the NOISE. The voice that tells me eating even a normal amount of food is bingeing. Eating icecream is weak. I am failing. I am going to become fat. Like, by tomorrow. Besides, I miss being hungry....If I had eaten half the sandwich, I would be successful. I HATE this feeling of fullness. I am being weighed down like a rock in the ocean.

I'm really having trouble determining which it is- anosognia.......or reality.

I gained 2.5 pounds. It's been the same for three weeks. I did not have the number until I finally got on the scale today, but my dietitian said it had been the same for three weeks, and not to worry. That we were out of the OH MY GOD, HIGHER LEVEL OF CARE zone, which we were in three weeks ago, but that we were not anywhere near finished weight restoring. So I got curious, and weighed myself. Never a good thing.

My stomach is disgusting me. I don't know if I can live in this body. I saw my legs in a yoga pose this week and nearly passed out.

So. I discovered powdered peanut butter in the organic section of the grocery store the other day. At first I was skeptical, thinking, this has to be processed to shit. But, they simply pressed most of the fat out of the peanuts. And viola! You add water and get peanut butter with one quarter of the calories! I really would be much, much thinner if I didn't eat peanut butter. It's one of the few calorie dense foods I will eat. So this discovery was like EUREKA!

My dietitian did not agree. Her response was, and I quote, "Oh my God. I'm freaking out a little."

I restricted for two days. And then I had a thought. Yeah, I'm fat. But was my life any better three weeks ago, before I gained two pounds? When I was thin?

I'm starting to think........anosognia. I ordered a mocha frappaccino at Starbucks to make up for skipping my workout snack.

But maybe it's not?

The Perfect Storm

I have this past life, that I lived for twelve years, and my memories of it are like a sketch, some areas intense with color, others very vague and incomplete. Unfortunately the vibrant memories are of the very end, the very tragic.

I was married to one of the great loves of my life. We met when I was just eighteen years old; he was twenty years my senior, but this rush I felt when I was around him was a magnet that drew me in....He was charismatic and wonderful and we got married when I was twenty. I had problems. Very significant problems. An undiagnosed eating disorder that was quite severe, yet easily covered by more obvious situations that almost everyone thought were the cause- quite frankly I was a raging bipolar who drank too much and said I was too depressed to eat and too manic to sit still. But my husband loved me. You see, in my young life I had never felt so accepted for exactly who I was. He knew my insecurities and not to step on them. He knew the triggers to avoid, the stressors to alleviate. He was strong and rational while I was emotional and moody. I wish the colors of the details of our marriage and the babyhood of our two children were more clear in my mind, however it all just ran together in this blur of tears and tragedy that was his death.

I had a therapist for six years. At the time he died, after diabetes ravaged his body and he finally let go, I was doing wonderfully. I had stopped drinking. I had started eating. I was on the right meds and at a healthy weight. My therapist flew home from vacation when I had her paged with what had happened.... And practically every detail of those events are etched in my brian with indelible ink. As she and I spoke on the phone, she said, "Five years ago we wouldn't be having this conversation. You would have already killed yourself."

For the twelve years we were together we lived near the coast in Southern California. It was a beautiful place, with sun drenched summers and mild winters. We were near my family and around them often. At the end of it all, I was thirty years old. I had a tribe of women to support me, as well as a therapist and doctor who knew every piece of my history. But lurking in the darkness was his illness, the man I loved more than anything, and when faced with his mortality I shoved it to the back of my consciousness. By now he was on dialysis. Diabetes had destroyed his kidneys. In April 2006 he had his first heart attack, ironically, because he always said "Diabetics don't have first heart attacks." But he did survive, albeit barely, and he was never the same. He never even made it up our stairs again. The four of us slept on two couches in the living room.

My birthday is in July and I remember it being so cast with darkness. It was a sweltering hot summer; the dog got fleas. He was sick with some sort of infection, so three days after my 30th birthday, he got in the car to drive to the ER, ostensibly to get some antibiotics and come home. I slammed the door in a rage; nothing was ever OK. It was the last time I saw him alive.

As soon as he drove off, a feeling of dread swept through me like ice slicing through the 90 degree heat. I packed my kids in the car. I yelled at my three year old because he was wearing a Winnie the Pooh costume that could have passed as a snowsuit, so I had to change his clothes before we could drive off.....

And then I saw the ambulance. I was actually following an ambulance and I thought, "It's for him. I know it's for him." Surely I saw his car on the side of the road in the distance. I pulled over and ran into the street screaming......"He doesn't have a pulse," said the medic, "Follow us."

Once we got into the ER, I watched behind a curtain, as my children chattered in a nearby room with a chaplain. They were doing compressions over and over. They asked if I wanted them to stop. I looked at his feet, pale, and I knew it had been too long. Six minutes without oxygen, they told me. But I just couldn't do it. Not yet. Keep trying, I said. Keep trying just a minute more. Somehow they got him intubated and "stable". No one thought he would survive the night. I remember each and every gory detail of the next week, every redundant test on his brain, the moments I spent crying with my stepdaughter, and when we finally turned off the machines. We waited, holding our breaths, but he did not go yet. The brain stem can apparently still operate respiration and cardiac activity for a while, even when the cerebral cortex is dead. I remember the 3 AM phone call when he finally passed away, and heaving uncontrollably on the cold tile floor, probably the only place in the house that wasn't warm and stuffy. I remember the phone calls that followed, the funeral home the next day, and telling my children. What I don't remember is most of my life. And what I do is just.....vague.

August 1st, 2006. The day I grew up. I was 30 years old. I took care of my kids. I moved far away, and got a job, and did all these things that grown-ups do. And I made this new life. I know I was running away; I know somehow I thought if I started a new life I would erase the pain of my loss. I think what happened instead was I lost the very parts of my life I want to remember. That's all; because I remember every traumatic detail.....but the joy is shrouded away.

I am genuinely happy in so many ways. I am amazingly blessed. I married a wonderful man that I love so, so much. His blue eyes just melt me, and he's my best friend. As crazy as I am, I must say I have been really good at having meaningful relationships. I had three more kids that wouldn't be here if I hadn't come to the northwest and married Anthony. We have an awesome family. Anthony is my rock, my everything, and my number one supporter. Sometimes I'm afraid it wouldn't be fair to Anthony if I had any happy memories of my past, which probably contributes to the way my PTSD manifests. I mean honestly, if it were so simple to just rewind and rewrite the story, wouldn't that be easier?

I also have an eating disorder and I seem to relapse every July or August. Maybe I want to forget the summer I grew old? It seemed odd for him to die in the summer, in the midst of BBQ's and beach parties, and children playing in the park. It felt like the rest of the world was in a completely alternate reality than my children and I. And then I had to figure out how to get rid of the dog's fleas, which had now infested my house. I never went back in my bedroom. A friend donated his clothes to Goodwill before we moved. It's these little practical things you don't realize you will now have to deal with alone....you are now responsible for everything. Every diaper change. Every dish. Every bill to be paid.

And then there is Diabetes. It is said that making strong associations that are very hard to break is common in anorexics. This is certainly true of me. I read a statistic, it stays in my mind forever. For things like college and interesting conversation this is useful. But I will make associations like, Brad died of diabetes. Brad did not follow his diabetic diet very well. He also had heart disease. That could have been caused by diabetes too.....

The list gets exhausting, but I ended up with a fixation with having the perfect diet. I was no longer the anorexic subsiding on diet Coke and cigarettes. I was just REALLY REALLY concerned about my health. A hot dog will kill you. A piece of non-organic chicken will kill you. Eat leafy greens and blueberries every day or you will die. Oh shit, now you are eating ONLY fruits and vegetables and you are back to this bizarre mix of starving yourself, like in the past, and actually believing this is the best choice, given the fact you are avoiding all these "bad foods".

Oh yeah, and you left your therapist, psychiatrist and support system in California. Your sweet husband knows your psychiatric history, and that you take meds, but to him you are pretty damn normal.

Ahhh shit, that's one hell of a way to create the perfect storm.

Dear Piper.....

Dear sweet girl,

I chose partial hospitalization for you, because you were moving in my belly, although I didn't believe them that you and I were in danger. But some part of me knew that this was not risk I could take. On some level I knew I had lost insight. I think this decision is why you were born perfect and big. I think the treatment team that supported me through that pregnancy and your first year of life is why you thrived on my milk.

I chose the birth that we had......I made sure you stayed on my chest from your first moments and looked into your eyes as we nursed. Not just through the hospital stay, but for your entire first year- you were never away from the comfort of my milk for more than two hours, and you never even had a bottle. I chose all of this because that's what *we* needed, after all we'd been through. And this took a huge level of committment from daddy. He knew it was so important for me to be with you, and also so very important for me to be in treatment, he devoted hours of driving and holding you while I kept my appointments. All so you could be right in the building if you needed me. We are so blessed. I am grateful I have this wonderful husband and that he is your dad. Because if I had anything to say about it, it wasn't gonna go down any other way. You see, my dear girl, there was so so much grief and despair and anxiety throughout your time in my belly......so many times I sat there, crying and staring at a cookie, and because of this powerful, powerful force inside of me, I just could not eat it. So many times I swam so hard I threw up, or nearly fainted, or drove in the fog of malnutrition, not to hurt you, but because the voice of the eating disorder was too loud and too intertwined with my own. I was more afraid of gaining weight than the consequences of these behaviors. Honestly, if not for you I don't think I would have believed I had anorexia. In the past I have become painfully thin and associated it with discipline and success. Anyone that dared to suggest otherwise was just trying to make me fat. But this time, even though my starving brain had left the lines between healthy eating and a dangerous obsession blurred, I chose treatment.

But I did not choose the disease of anorexia. I did not choose to fail at recovery, over and over and over again. I did not choose the eating disorder voice that resonates so loudly in my head, never dissipating, only vacillating in its intensity and the ugliness of its tone. I mostly fight it, and I mostly do all I can do- which is maintain this status quo, which is so less than perfect and barely good enough.

I did not choose the relapse I had when you were eight months old. I rapidly lost weight after I was told under no uncertain terms that there could be no more weight loss. I took exercise classes I had no business being in given my nutritional status and my weight. Also, it is an unequivocal truth that anorexics who exercise AT ALL until in a very stable period of remission, are at a huge risk of relapse. Because I really had not been able to let it go. Let 100% of the control go. I will not go into how much people misunderstand this fact, and how horrible it is for people with eating disorders to hear that they can exercise all they want as long as they eat.... because unfortunately there are so many things about ED people don't understand.

However, when I was confronted with another admission to PHP, to being unable to continue to nurse you sweet darling, somehow, somewhere inside me, I found the strength to stop that weight loss and stay with you. Every day, I manage to maintain that status quo, the number that is too low, but not low enough that it requires severe restriction to maintain. I eat. I eat a lot. Just not enough for my metabolism, my exercise level, and the fact I barely sit down all day.

I have, according to the experts, made strides. I ate at a buffet on Father's Day. For your dad. And the guilt consumed me for a WEEK. I thought of that as a failure, although I am assured that merely going and trying a few new things and eating dessert was a success- even if I hated myself a little for it.

And here I am again. I have a headache. I have a 60 day streak on a calorie counting app. I engage in triggering conversations about weight and nutrition and exercise that I should steer away from.

But I can't. Because that voice is so loud, and if I listened to it any more than I do I know what would happen- it would look to me like a beautiful snowflake, my weight going down, feeling my bones more sharply with each passing day, heading into a hypermetabolism. And then, suddenly, you look up, the anorexic, and you see an avalanche upon you, barreling down a hill, with enough momentum to not only smash into you with unbelievable force, but to crack every facet of your home and break everyone and everything you hold dear.

My weight is holding. And only because some days I eat. Some days I hate myself for eating and eat far less than I should.

But some days I eat. Some days I nourish my body simply because you call nursing your "cuddles", because you need my milk emotionally even though at 17 months old, you are eating plenty of solid food. You love to cuddle. You are the sweetest, most affectionate child. And I am your world. My therapist says I need to find another passion, something of my own to be good at besides losing weight. Because baby girl, sometimes it's lonely having five kids. I love being a mom. But this eating disorder has become the identity that I need that is just mine.

You, my darling, are my line in the sand. You are the line that I will not cross, because if I crossed it there would be no controlling the force of my anorexia. So I stay so very close to this line, hoping that  can continue this life right there on the edge without falling.

I know what I need though, ultimately, to get into true recovery. I found it once, written in a journal during a period of desperation, scrawled in red Sharpie.....

Find something else.

Find something else. It is a goal my therapist has for me to think about this week.

My daughter, I love you. I do what is in my power. I do not want you to witness this struggle as you grow. But unfortunately, wanting isn't enough. Because having an illness is just not a choice.

And for that, man I am sorry.

Love,
Mama

What is "the recovery choice"?

Sometimes my ideas about food are so complicated. I have no idea if there is some deep emotional root to this situation, however at the moment I really don't think so.

I am weird about food. I am trying not to be black and white. I am trying to have balance. I know someone who gave me some advice that her nutritionist gave her. It sounded simple enough- when she is choosing what to eat to make her meal plan, she should ask herself, "What is the recovery choice? And what is the eating disorder choice?" Easy right?

Or not.

Today I was planning on baking something with the kids. I fully enjoy cooking and the creative experience it is for me, just as I enjoy writing and art. Mostly I like making healthy recipes for my family, but I have incorporated more baking as of late because I have four January birthdays (including Piper's first birthday) and one December. And everyone wants something special, which I'm trying to accommodate, because well, it's not the kids' fault I am fertile in the spring. So I am practicing in the hope to have some mad skillz here soon. And decorating these treats is actually fun and relaxing to me (I'm basically the only person in the world that finds running around a hot kitchen with an infant strapped to her back in a baby wearing contraption relaxing but nonetheless....)

However, ED circumvented my plans, or maybe not. Maybe I am making this woefully more complicated than it is. Dylan wants Spider-Man cupcakes. Oh heavens, this requires a ton of red dye. I find this incredibly unnatural and am not planning on eating one, but hey, let children be children right? Or not. How bad in the scheme of badness is red food dye for kids? I figure I am yet again overthinking this in a moment of serious orthorexic anxiety, and go to the store for (gulp) red dye and marshmallows.

And this is where I choke a bit on my unsweetened ice coffee with organic milk. The latest issue of "Eating Well" has come out, and apparently one can make a natural (notice I did not say low-calorie, I am fully aware I am not on a diet, and neither are my kids) sugar cookie dough, and decorate these with sprinkles and icing tinted with cranberry juice concentrate and green tea and egg whites, rather than a host of unknown ingredients and chemical additives. My natural hippy heart skips a beat and starts gathering the whole, pure foods necessary to make these cookies. They are perfect! They are moderately healthy and they are still cookies, after all. This, I decide, is the recovery choice. Except no one will die from artificial crap at the same time.

And then..... Dylan. Cranberry juice cannot possibly yield a deep enough red for Spider-Man. It's just a simple fact. So I go, and gather my packaged dye, conflicted. My brain is flooded with thoughts and I walk the aisles of the store for an hour.

Finally I decide that we will do both, although we cannot do both TODAY. I pay for my scary red stuff and marshmallows in a package and decide we will do natural Christmas cookies when it is closer to the holiday.

Dude, I hope this meets the definition of balance. Because I am conflicted and exhausted and starting to rethink the idea of baking. Anything. At all. Ever.

Oh this is just not easy......

They call it a mental illness for a reason- it simply doesn't make any rational sense. Someday I will post more about treatment during pregnancy, and how deep I was in the disorder, and how for some reason I was completely petrified of gaining weight, but yet I did understand I needed to do that, even if I needed serious help accomplishing the six time a day decision to nourish myself and my daughter. The reality of the situation, was that Piper grew and flourished. It was I who suffered dizziness and nearly fainted from excessive exercise and crashing blood sugars..... That's because she took the calories I was eating and I, well, starved.

Anyway. Fast forward to the present moment, where I am 10 months postpartum and my beautiful girl thrives on both breast milk and solids. And I'm underweight. I've been sold on the concept of not losing any more weight. I mean, once I started losing, it was like this rapid descent into hell that I could not stop if I wanted to. The road to anorexia is like a bit of snow landing on the ground. Oh that snow is pretty and soft and you hope a few more flakes will fall and join it. And they do. And the next thing you know this giant, out of control snowball is sliding down the hill, straight where you live, right for your home, picking up more and more snow until it smashes into you and yours and takes you down. That is the disease. It is a soul-sucking, mind-numbing, emotionally blunting, hauntingly terrifying and yet sneaky with how alluring it can certainly be. Who doesn't want to be fit? Healthy? Most people, but no one, and I mean no one, experiences the drive for thinness like an anorexic. It's like a lifetime goal for us, and if the disorder had its way we would starve ourselves straight to death and it would still never be enough.....

But. You know what? A little treatment team intervention with the hubs made me realize that the eating disorder wasn't going to win because no one was going to let it. So I ate the meal plan and waited to get fat. And gained..... Nothing. My needs at the moment are apparently quite high. I have gotten myself to a physical state in which if I eat a normal amount of calories I will actually lose weight and right now I'm eating a hell of a lot and barely maintaining my weight. I am really really scared of what I am going to have to eat in order to actually gain anything. Because in reality I can't understand why I have to do this at all! Ok, I stopped losing. I'm not dying or anything. Why can't we just leave well enough alone?

Or what if I dig a little deeper, and I leave behind the urge I have to always be the story teller, and stop fixating, for a moment, on numbers and behaviors like restricting and exercise, and ask myself why? Why is it that when I agreed to gain this weight that I haven't gained, I went crazy orthorexic and started making literally everything I was going to eat myself, in order to know what was in it, precisely? I was in the kitchen, cooking and freezing stuff, and ensuring my status of fruits and vegetables consumed was optimum, all with a baby on my back. Exhausting. And there I go again, focusing on what really doesn't matter.

So I am taking these baby steps in which I forge a life where the ED is not a comfortable friend (who has borderline personality disorder and really wants to take me down, but I have Stockholm syndrome and keep coming back for more)..... I am trying everything people! I distract. Anthony and I are now into Parenthood. We're totally addicted. We watch like three episodes a night as we are trying to catch up to the current season. I do stuff with my kids that is fun and doesn't always involve the gym. I am mindful when I exercise, ok not really, but I try. I stay off all the damn ads proclaiming how to lose more fat and what ten foods to never eat on Facebook. I am trying to be more social, but dude, I have anxiety. I'm failing at this. Next I am going back to church to try and reconnect spiritually. God got me nine years of sobriety, he can possibly get me to maintain a normal adult weight and eat like a normal human again too, right? Although honestly, divorcing myself from wine was a hell of a lot simpler than this six time a day decision I have to make. Eat. Eat healthy, but not overly so. Exercise. But not too much. Just because a little bit is healthy doesn't mean a lot is healthier. Good god my head is spinning. I am also trying art journaling. I love art, and I love writing. Let's see what happens when we put them together.

Digging deeper still, beyond the obvious fact I have control issues, and food and exercise are very safe things that I can try to control, and that I have a lot of dysmorphia regarding my size, it is very hard to let go of the ED. It's the one thing in this crazy, child-centered, stressful, chaotic life that is 100% mine. Kid refuses to nap? Start adding up the day's calories in your head. Financial problem being thrown in my lap? Whatever, I'll swim the English Channel and skip my evening snack. And in the morning I'll feel thinner. It's difficult to be an extremely emotional person who is not comfortable with emotion..... And then there are four kids with birthdays all in January, one with a birthday in December, and a couple of holidays sandwiched in for good measure. A normal person would take this opportunity to gain weight and run with it (not, ahem, die of anxiety over like two bites of cake.)
I'm trying to plan stuff to make them feel special without killing the budget, which will be awesome and spectacular. Because this time I am going to do art projects with Jules, and bake really cool birthday cakes, and swim for the joy of it. I'm going to write letters to my almost 11 year old while he still loves reading them, and run and play with my toddlers. And I am going to cuddle and nurse this baby girl for as long as she'll let me because she is our last. Once in a while I take a snap shot of the precious times with my brain, because I know someday they're  all gonna grow up and Anthony will have our calm again. But right now we have little kids that love us so much yet stress us almost to our very limits.

But I got this. I got this mommy thing. And I do it a hell of a lot better when I'm not hungry.

The Beginning

I guess I shall start by explaining what exactly this blog is about- I have blogged about attachment parenting, and all the parenting views I still hold dearly, but you know, when my life fell apart as a result of a deadly disease (one I was overly confident was far in the past), I started to care less and less about Facebook arguments and being "right" in the mommy wars, and more about the war I was waging to survive my pregnancy and nourish my baby. And compassion. Empathy. I started to feel a lot more of it in the way I addressed other moms. Because you just don't know what someone is suffering through that is not on the surface. In fact, I've become a bit jaded towards the so-called crunchy lifestyle because the myriad of hyperbolic Facebook posts and articles about the evils of different foods- gmo's, dairy, gluten, sugar, etc, had and really continue to impact me. Also the idea that psychiatry is toxic and the "go off your meds and onto some homeopathic medicine" attitude bothers me. A lot. These sentiments are harmful to those who require meds to live. So the short story is yes, I breast feed my kids into toddlerhood, and co-sleep with two babies and do not circumcise. But I also know the darkness of mental illness and that life is not always simple. Everyone has a story.

Anyway, this blog is about anorexia. Yes, there is almost an alluring aspect of this disease to both those who have it and those who don't, and the comments the anorexic receives do nothing but perpetuate the disease.......

"Oh you eat soooo healthy! How disciplined you are."
"Wow, you have the perfect body.... I really need to exercise like you do."

As I said this blog is about anorexia. In particular it is about relapsing into this illness during pregnancy and postpartum. These are challenging times for women in so many ways- the stress and identity change of becoming a mom, the body image issues that come the dramatic changes opregnancy, and the very real pressure to get "back to normal" very quickly after giving birth. And for those of us who struggled with an eating disorder before pregnancy, this can be a triggering time.

And here is where I put my trigger warning. Read on at your own risk as I don't intend to censor myself here.

I began restricting and compulsively exercising before Piper was conceived. I thought I was ok because I was still at a normal weight. When I found out I was pregnant, I could not eat enough to gain weight and both of our lives were in jeopardy. I had lost hunger cues, and thus the ability to eat intuitively. I was terrified of gaining too much weight, when in reality I was gaining nothing. At 11 weeks I was hospitalized and rehydrated and re-fed and sent to a treatment facility to try and recover. Six weeks later I entered a partial hospitalization program because I was just too deep in my disorder to recover on an outpatient level. For ten weeks I spent 11 hours a day, 3 meals, and 2 snacks with other women suffering from eating disorders. I spent so many hours sitting around that table with the lovely view of trees and beautiful water in the most idyllic northwest setting, freaking out over food. I was so entrenched in the disease, so starved because what little I was taking in was being taken by Piper, that I had emotionally disconnected from everything but my eating disorder; from the daughter I was growing, from the family I had left at home. I had checked out completely, but I had (and still have) this amazing treatment team. Feeding Piper. That was my goal, at least until I could find enough grace towards myself to nourish myself. In many ways I still keep going because I am feeding Piper- she is still mostly breastfed while she explores solid food. My therapist said once, "Your eating disorder is so harsh to you that it won't even give you grace for being pregnant."

Yes. Indeed.

"You must do the thing you fear you cannot do." - Eleanor Roosevelt