We Are Survivors - Emilee: Finding myself again.

February 13, 2013

My name is Emilee and I am a dancer who loves to drink tea, play guitar and piano, sing, run, stretch, crochet, do jigsaw puzzles, read and write. Oh, and I have type 1 diabetes and am in recovery from bulimia/diabulimia.

I do not define myself by these illnesses anymore. For many years, I let my diabetes and my eating disorders control my life. They became who I was,and what I did. Every single day was filled with food obsession and desperate attempts to lose weight – or at least avoid weight gain at all costs.

It all started with a simple diet; I was only 11 years. Living with type 1 diabetes demands that I stay aware of what and how much I eat, but this was different; I began to obsessively monitor and restrict my intake. I had constant low blood sugars, despite drastically reducing my insulin, because I starting taking a lot more classes at my dance studio on top of working out at home. I thought I was doing a good thing; I thought I was being so healthy with my neurotic eating and exercising. But I had taken it too far; I was underweight and my health was certainly not benefiting from my behaviors. I was always tired and cold no matter what the temperature outside, my hair was falling out in clumps, I lost my period for 2 years, and my pulse was extremely low and weak. I missed out on a lot of social events with my friends either due to fear of the food or because I was completely devoid of any energy and had no desire for social interaction.

Long story short, after three years of anorexic behaviors, I semi-recovered when I was forced to have weekly appointments with my endocrinologist (I only say semi because although I became weight-restored and didn't obsessively measure my food anymore, my views on food/weight were still very disordered). I had been referred to an eating disorder treatment center, but it was months before my first appointment was scheduled. By the time it came around I cancelled it. I felt it wasn't necessary.

Unfortunately I was wrong. For a year I was "okay" before I developed bulimia. That quickly spiraled into daily binging and purging. My blood sugar levels became more and more out of control, but I just didn't care anymore.

I soon discovered that if I didn't take any of my insulin, I could lose weight eating essentially whatever I wanted, and as much as I wanted. I remember thinking, "Wow, I am so LUCKY! I used to have to starve myself and purge… but I now I can lose weight by eating MORE of whatever I want." At the time It seemed to be such a blessing. I thought it would be a relief not to have to obsess over food anymore. But I could not have been more wrong; it wasn't a relief because in fact my obsession became an addiction. I wasn't obsessed with measuring exactly what and how much I was eating anymore; I was just obsessed with eating. I had a constant need to consume. If I wasn't eating, I was chewing gum or drinking some type of beverage - which was in part due to the fact that I ALWAYS had an unquenchable thirst (It was such an uncomfortable feeling to have a dry mouth despite having just inhaled an entire water bottle! I would be so thirsty but so nauseous that I didn't want to drink anything).

I hadn't planned on omitting my insulin for long; I knew the risk of complications increased exponentially the longer blood sugars were out of control. Every night I told myself that "tomorrow my levels will be perfect." I believed that I could easily regain control if I wanted to, so it wasn't that big of a deal to let them run high for "one more day." I felt invincible. Sure, my A1C became severely elevated and I always felt extremely ill but I hadn't experienced any serious complications (yet).

After two years of this, my life was falling apart.

The things I once loved held no enjoyment anymore. It felt like it was too much effort to play guitar or piano (and singing was out of the question with being so dehydrated). I would try to read but end up just staring blankly at a page, attempting the same paragraph numerous times until finally I would give up. Even dance, my one true passion, felt like torment. It was hard enough to will my body to move at all, let alone dance. I missed out on my "university experience" - the only memories I have are of being in the washroom all the time to pee and feeling guilty for missing my classes because I was either bingeing or too tired to go.

I confused my lack of energy and desire to engage in activities as just a loss of interest, not the consequence of the dangerous behaviors of my eating disorder. The only problem was that I wasn't interested in anything. I couldn't hold a conversation (and frankly, I didn't want to). I didn't even want to watch TV because focusing my brain on what was happening felt far too strenuous. I cancelled all my plans with friends, and eventually stopped making any because I knew there was no guarantee I'd be able to function, let alone socialize. My life became only about food. It consumed my every thought and desire. The concept of "normal eating" became completely foreign to me; I felt like I could eat anything, any time, and I didn't understand how people could tolerate eating actual meals. I lost all sense of being full, or hunger for that matter. All I felt was a constant need to fill the emptiness inside me. I remember one time I binged and my stomach was so full that it was extremely painful. I knew it was time to purge so I headed to the washroom, only to stop mid-way and breakdown. I wanted desperately to still be eating. I began to wrack my brain for what else I could eat but no food seemed good enough to satisfy me. I even tried thinking of foods that weren't available to me right then and there, but I didn't want any of them. I didn't understand; I wanted to eat but there was no food that appealed to me.

Ironically, living the life I thought would be pure bliss turned out to be pure misery. I wasn't living, I was barely existing.

I called in desperation for treatment. I had to wait 3 months for my first appointment, so I decided to tell the juvenile diabetes clinic I attended at the time about my insulin omission. All that they provided me were looks of deep concern and confusion. They listed off all the dangers, but I already knew them. I left feeling only guilt and shame.

I started outpatient treatment at an Eating Disorder Treatment Center, hopeful that it would help me deal with my issues. Unfortunately the staff did not know how to deal with the diabetes aspect of my ED, and although the groups were supportive, I always felt alone because no one could relate to me. At one point my health got so critical that it was suggested I go to inpatient treatment. After extensive research, though, I found that there were no ED inpatient centers in Canada that would admit me as a diabetic - it was a specific exclusion criterion. I felt as though I was a lost cause, that my situation was just too complex and no would/could deal with me. I didn't know what to do. I wanted to give up.

When I was younger, I always told myself I would never let my diabetes stop me from doing anything – and I didn't have any trouble believing that was possible. I didn't intentionally let it get in my way, but boy did it ever. Having constant high blood sugars held me back from literally everything. But I was terrified – not only of weight gain, but of having to go back to a life of constantly checking my blood sugar and giving insulin, worrying about going low, actually going low. But more than that I was so sick and tired of being sick and tired!

After almost 3 years of recovery, I have finally begun to find myself again. There were many, many slip ups, relapses, and some "symptom swapping" but no matter what I always believed in recovery. I had to make a lot of difficult choices – like quitting my job because it was extremely triggering and dropping out of school so I could focus 100% on recovery. I committed to always giving myself my long-acting insulin and eventually was able to give my short-acting in the right dosage. The frequency and size of my binges began to dwindle as I filled my life and body with the nourishment it had been lacking for so long. I could actually resist urges to binge, and soon they began to even disappear (something I never thought was possible!). I began to have energy, focus, and a vitality that I hadn't ever felt before. It felt good to feed my body and have normal blood sugars, and because I was respecting my body, my body was respecting me. I was dancing again. I was alive.

Now, I can't believe the torture that I put myself though, and for what? Sure I lost some weight (but truthfully I mostly ended up only maintaining) but the tradeoff was enormous. There is good that can come out of any situation. I now have a tremendous appreciation for how wonderful life can be and I don't take for granted how good it is possible to feel. My life has purpose now. My experience of enduring and overcoming the throes of anorexia, bulimia, and diabulmia has left me fueled with a desire to help those who are also suffering or are at risk!

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