Sick and tired of being sick and tired.

The Year My Body Shrank by Amanda Fortini, published in Elle, rings scarily true to me. Amanda suddenly lost 20% of her body weight with no explanation. People whispered behind her back, commented on her bony physique, were jealous of her “weight loss” problem. She went from loving her body to avoiding photos, from trusting doctors to spending a year trying to figure out what was wrong with her body. She got a diagnosis, eventually, but it was a devastating 12 months.

A year ago, I got mono. I lost 15 pounds, spent six weeks sleeping and woke up to find my collarbone sticking out of my chest at an odd angle. Only…I didn’t gain the weight back. I didn’t really manage to get out of bed. The mono seemed to settle permanently in my body, which doesn’t make sense medically.

Since then, I’ve seen eight doctors, done thousands of dollars worth of lab tests, kept food diaries, sleep diaries, exercise diaries, pain diaries, migraine diaries…I’ve been to the emergency room and specialists, general doctors and psychiatrists. I stopped exercising completely due to fatigue and weight loss and started eating ice cream for breakfast. I went from 2000 calories a day to 3500, all trying to gain weight. Theories ranged from TB to malaria to parasites to sarcoidosis to celiac disease to sepsis to a second form of mono.

I’m afraid of my body in the mirror. I have no pants that fit and I’m used to people telling me that they wish they had my problem. Not being able to gain weight must be so nice, right?

I used to run marathons. I used to dance 12 hours a week. I used to be slim, but my hipbones didn’t jut out of my pants so sharply that people think that they’re Visible Panty Lines. I used to eat whatever I wanted and stay firmly at the same weight I’d held for six years.

Now I’m rebuilding my identity. I’m skinny, I’m fatigued and I’m significantly less capable than I was. My memory is affected, my stomach hurts all the time and I have migraines on a regular basis. I still have no diagnosis.

But it’s been a year, and I can’t wallow in who I used to be anymore. I can’t sit around waiting for a diagnosis that may never come and a cure that probably doesn’t exist. Someday, I’ll be healthy again and be able to get through a day without multiple naps. Someday, I’ll run marathons and qualify for Boston and dance and teach choreography to children. Someday, I won’t struggle to remember the most basic facts of medicine or what the lights on top of the cab mean or if I had lunch with a friend yesterday. Someday, I’ll be able to say “Hold the dressing” on my salad without feeling guilty about the lost calories.

Right now, I’ll be content in doing less, eating more, working less, and sleeping more. Right now, I’ll be glad that nothing is terribly wrong with me, that I’m not struggling with too much weight, that I have food to eat and that I’ve been able to see doctors. I’ll be glad that I have friends that put up with me and a store selling ice cream right down the street. I’ll be glad that I have an excuse to bake and a reason to eat chocolate every day. I’ll be glad that I can get through a day of school and that maybe my scale is tipping back upwards. I’ll be glad God has blessed me so abundantly in my life and be grateful for everything I’ve been able to do in the last 24 years.

Hello, world. This is me. This is my body. This is what I can do.

Thank you, God, for me, in any form.

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2 Responses to Sick and tired of being sick and tired.

  1. Joanne says:

    After having been on both ends of the weight spectrum, I can definitely understand how you feel. And while trying to lose weight now really sucks, I think that having to gain weight three years ago was infinitely harder. It's harder to deal with people staring and talking and then saying how lucky you have it, and really it's not luck at all. It's just tiring to have to think about how much you NEED to eat every day. Especially when you don't necessarily want to drown yourself in butter and fast food. I hope things start to get better soon! you WILL be able to do all the things you want to do again. This is just a rough patch. (And from now on I'm sending all of my leftover baked goods to your place.)

  2. Thanks for the encouragement, Joanne. It's not been my favorite time and I never thought I'd say it, but I might be getting sick of ice cream. I'm definitely sick of Ensure :-p It's nice to know someone else understands what's going on!

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