refeeding syndrome: my story

there isn’t a lot about refeeding syndrome on the internet.

sure, websites will tell you about how it was discovered after the holocaust.

sure, websites will tell you how starvation mode, for an extended period of time, will cause this.

sure, websites will tell you that it’s common while recovering from an eating disorder.

but to me that isn’t good enough.

those aren’t answers.

those are facts.

those aren’t stories from real people.

this is me, november 2011. i was about 95 lbs here and truly believed i was disgustingly overweight.

this is me, november 2011. i was about 95 lbs here and truly believed i was disgustingly overweight.

i decided that if i ever made it to recovery, i’d tell my story.

well, here i am.

the pictures are of me.

the story is my own.

and here’s the uncensored truth behind refeeding syndrome.

the summer of 2012 was a living hell for me.

i had decided in february of that same year i was going to kick anorexia’s butt, so i began my own recovery program without the aid of a hospital.

i’m 5’4″ and at my lowest i was 85 lbs.

i knew i needed to eventually weigh more so naturally, i began to eat more.

months later i would learn how incredibly dangerous this was and how i could have potentially died, due to complications.

refeeding syndrome is the long-term effect of starvation mode in which your body stores everything you take in.

if untreated, health risks can range from cardiac arrest, organ failure and even death.

let that sink in, because of the eating disorder you’ve been clinging to for security, you could die.

the eating disorder i clung to for security almost killed me.

but getting back to the story…

i began to notice my physical appearance changing as i tried to increase my caloric intake.

i began to look “puffy.”

this terrified me because i didn’t want to “get fat,” but i knew i needed more food.

i began trying to restrict again and exercise more, but the weight kept piling on.

it scared me.

badly.

my clothes stopped fitting.

my face was getting really full.

the worst part was i was eating less than 400 calories a day and i was still gaining weight fast.

this is me, summer 2012. i had nearly doubled my body weight and was visibly "puffy." i was incredibly depressed and have very few pictures of myself from this time.

this is me, summer 2012. i had nearly doubled my body weight and was visibly “puffy.” i was incredibly depressed and have very few pictures of myself from this time.

some weeks i was gaining over 5 lbs and my doctors couldn’t figure out why.

they told me to eat healthy, but i already was.

they told me to exercise more, but i already was.

nothing was working, so they began to test me for heart, kidney and intestinal problems.

to make matters worse, every time i ate anything i was getting sick.

i seriously couldn’t keep anything down for more than 20 minutes before i would get sick.

the doctors couldn’t figure out why i was so puffy and i became frustrated.

i quickly slipped into depression and stopped seeing my friends.

i sat inside and played on my computer because i was ashamed at my outward appearance.

a few months ago, i was able to control every aspect of my physical appearance and now i couldn’t even if i tried.

i now was tipping the scale at a little over 160 lbs, officially overweight and unable to do anything about it.

i was about to transfer to a new college and i was afraid no one would want to be my friend because i was “the fat girl.”

i wanted to die and cried all the time.

then my doctor suggested one more blood test:

hypothyroidism.

if this was my problem, it meant my metabolism had been so weakened, by my anorexia, that it stopped working all together.

words cannot describe how happy i was to find out that i tested positively for this disease.

by taking one pill a day, i was able to have a functioning metabolism again.

this meant more energy, better moods and natural weight loss.

over the past 20 months, i’ve learned to be patient with my body as i’ve watched to slow change “back to normal.”

this is a photo of myself from last month. i'm slowly making progress towards a healthy and normal life.

this is a photo of myself from last month. i’m slowly making progress towards a healthy and normal life.

currently i’m in the high 120s and have been told by my doctors not to lose anymore weight.

i’m not allowed to diet, but i am encouraged to exercise daily and make healthy choices.

i’d be lying if i told you everyday is easy and i never struggle.

i’d be lying if i didn’t look in the mirror and sometimes wish i had my skeletal frame back again.

but i’d also be lying if i told you i was happier living with anorexia.

these past 20 months have taught me that i may not look like a model but i’m still beautiful.

these past 20 months have taught me i’s ok to eat a reese’s cup.

these past 20 months have taught me that no one is too far gone.

if you would like more information on refeeding syndrome, please read the linked article.

it’s full of really good information that is very accurate.

just remember, you didn’t get to where you are today overnight, recovery takes time.

you are beautiful.

you deserve to know the truth on refeeding syndrome.

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12 thoughts on “refeeding syndrome: my story

  1. Diane January 4, 2016 at 11:23 pm Reply

    This happened to me! I don’t know my lowest weight, but I was eating about 200 calories per day for almost a year before I passed out in class and woke up being carried to the nurse’s office by my teacher. I started eating again and weight piled on even though my food was healthy. My doctor never tested my thyroid, just put me on a diet (1983) and I kept gaining. I topped out at 310 after seeing lots of specialists over the years, telling them my whole history. Nobody ever mentioned thyroid. I finally had gastric surgery and lost 60#, but my doctor said it looks like this is where I’m stuck. I’ve done everything right except for being stupid as a kid and not eating, but anorexia isn’t just physical, it’s mental. I still exercise and eat healthy food (in tiny amounts now because of the surgery), but it looks like I’ll always be 250#.

    Like

  2. Annette Aberdale-Kendr July 26, 2015 at 11:29 am Reply

    You are a real inspiration! Your honest words can offer so much to others. The way you tell your story and explain your experiences is very meaningful. I am so happy for the self love you are finally offering yourself!

    Like

  3. Rachel June 14, 2015 at 11:48 am Reply

    I can’t stop crying. I have been searching and searching for a story like mine but until now I’ve had no luck. I was beginning to think I was doomed and alone.
    I have been in recovery for nearly 7 months and these last 2-3 months have been hell.
    You see, something is wrong. I almost doubled my body weight. I am so miserable, sore, and both mentally and physically exhausted from trip after trip to the emergency and doctors office without any answers or results.
    My lowest weight, which I was just 7 months ago, was 90lbs. My pre eating disorder weight was 125lbs. I weighted myself yesterday and am 170lbs…
    I cry every day. I can’t bare to look at my reflection. I’m sore and stiff everywhere. I can’t see my feet when I look down. People come up to me and ask how far I am in my pregnancy… My family says they can’t recognize me anymore.. I have NEVER been anywhere near this size in my life! This is not normal! This is not me!
    After reading your story and completely relating 100% I feel that there is a ray of hope for me.
    Thank you so much for sharing your story, I needed this. x

    Rachel

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    • emifeldman July 26, 2015 at 7:31 am Reply

      I’m so glad this blog has been able to help you and be something you can so closely relate to. It’s comments like ours that remind me why I blog and why I so openly speak about my disorder. Remember: this is just a phase and you will get through this. I know it seems like this is permanent, but with time your body will normal out. Use this as your motivation to fight relapses and continue to believe in yourself. You ARE BEAUTIFUL and you deserve to flourish.

      Like

  4. […] few months ago, i published a piece called “refeeding syndrome: my story” and it took […]

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  5. Oiseau January 20, 2014 at 10:17 am Reply

    Thank you for sharing such important information and for opening up your personal story to us. The dangers of eating disorders of all kinds are often ignored.

    Like

  6. B.B. December 26, 2013 at 8:40 am Reply

    Well, i experienced this too.
    But I wasn’t anorexic, I think. I lost 70 lbs during 6 Months by eating 3 fruits and 1 yoghurt a day. Then I began to eat normally again. Now I’m hypothyroid. I have to take a pill with 150 mg L-Thyroxin, thats pretty much. And my gall bladder had to be taken out, because there was a big gall stone inside. This can happen if you eat no fat at all.
    Well, now I cant diet like that again and I’m still gaining weight, because my theroid pills are still too low. Current weight 240 lbs. I was at 110 lbs when I finished my diet. I eat less then 1000 kcal a day and exercise 2-3 h a day

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    • B.B. December 26, 2013 at 8:41 am Reply

      Sorry for my bad english, I’m russian

      Like

    • emifeldman December 30, 2013 at 2:21 pm Reply

      Thank you for sharing your story, I really appreciate it! I also commend your English; you write very well. You’re right, after you diet very strictly you aren’t able to diet because your body just can’t handle it. I take 100mg of my thyroid medicine a day and i’ve noticed i’m slowly losing weight; just like you are. It’s no fun to be patient and wait for the weight to go away but I’m proud of you for sticking with it and trying as hard as you are. Make sure you’re taking in enough nutrients a day (shoot for 2000 calories to lose the weight and get back to normal more quickly) and exercising in moderation.You’re on the path to reclaiming your life; keep going!

      Like

  7. […] in an earlier post, i describe in great detail my own struggle with anorexia. […]

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  8. K October 31, 2013 at 4:49 am Reply

    I’m experiencing this same problem right now! If I stop restricting, even a little bit, I BALLOON — not in my imagination, on the actual scale. I should get my thyroid checked!

    Like

    • emifeldman October 31, 2013 at 11:51 pm Reply

      I think it might be the trick and get you back on track!

      Like

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