Struggling with Refeeding and the Long Recovery from Anorexia

Have you learned anything new about yourself after you got Diagnosed?

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As I struggled to feed myself yesterday and today, I thought of something my bestie used to say when life sucked and didn’t make sense. “Whose freaking bike did I steal in a previous life?”  As I reflected on this, I realized that one of the things that are SO difficult for people to understand…anorexics as well as those without an ED….is how difficult this process of refeeding can be…physically, emotionally, and psychologically. How the “day of Frost” sneaks up on us. AKA the day of refeeding where two roads diverge in the ED woods. Where you must choose between two “Rs” …refeeding or restricting. Mine is always…always… day 16. This coming Sunday. So, in the spirit of anorexia education, here is the “real deal” about refeeding and my preparation for the “day of Frost”.

Doctors, nutritionists, and therapists alike would prefer that refeeding starts with the insertion of a feeding tube. That way nutrition can be consistent and controlled which is easier on one’s body…especially for someone like me whose body has no idea what to do if it gets fed two days in a row. As you can imagine, most of us say “oh hell no”.  We are not willing to let go of the control of what enters our bodies. But some of us, like me, have no choice. It is the tube or die.

There are two types of feeding tubes. An NG tube is what most people are familiar with. It’s the one that is shoved down your nose and throat until it lands in your stomach. In case you’re wondering, it’s one of the most painful things I have ever endured. They don’t numb you. Just start shoving shit in your nose. You gag as it enters your throat and you know exactly when it hits your stomach because you instantly are in excruciating pain. Then the physical pain turns into emotional pain as you realize that as soon as you sit up, someone you love or a damn machine is going to start shoving food in you at regular intervals. So, you cry. You tell people it is from the pain of the tube. It’s not. It is your fear manifested as anger and sadness. And a sudden realization that you now wear the “scarlet letter” of anorexia. The advantage of this method is that when you get pissed off you can just pull the sucker out of your nose. Yep. Been there…done that…6 times. Only to have that sucker shoved back in with the threat after insertion number 7 of the second tube route or inpatient the next time I was a shit.

The second way of refeeding via tube is through a peg tube. This sucker must be surgically placed through a hole in your abdomen and inserted into your stomach. Side note- most surgeons won’t do this. I’ve had two comment “You don’t look anorexic. Why should I do this procedure?” Talk about a total mind fuck. My doctor wanted to KILL them both. I digress. Good news is that they do knock you out for this bad boy. The advantage of this tube is that no one can see it. It is uncomfortable as hell though because every time you move your midsection it tugs on your skin. Another fun peg tube fact. The thing leaks gross yellow goo until the incision heals…which smells AWFUL because it is crap from your gut!  Not to mention that you have to shove the damn thing under your bra to keep it hidden which requires you to wear a sports bra which doesn’t do much for the girls.  And it drips! Drips. So… if you’re not careful you can look like you are a breastfeeding mom who leaked all over herself. Fun times! While the peg tube still allows you to somewhat “hide your anorexia” from the universe, the largest disadvantage is that you can’t pull this baby out (even though I’ve tried). AND it must remain in you for 3-4 months like an alien baby before any physician will sign off on having it removed. Total suckage for bikini season.

We’ve established the preference for refeeding. However, 85% of us don’t take that route unless we are found unconscious and wake up in a hospital with one in. Yep. Me again. Next question. Without a tube, what other refeeding option is there? We try to feed ourselves… ‘cause that has gone so freaking well! Some of us are more successful than others. To some, not wanting a tube serves as motivation to tackle recovery one bite at a time. Regardless of the route, tube or mouth, refeeding has SERIOUS risks and presents challenges only us anorexics are painfully aware of.

Refeeding restarts your body’s “holy shit I got food” mechanisms. It starts to store nutrition in weird places because it doesn’t know when it will get it again. Some organs are not good at playing in the sandbox. Believe it or not, the heart continues to be the last one to the party. Anorexia steals the grey matter of your brain at an astronomical rate. Fun fact…it will take up to 5 years of consistent intake for an anorexic’s brain to recover the grey matter Ana stole. Missing grey matter is why I couldn’t remember my address sometimes. Or how to spell. Or walk. No brain cells. Things no worky. So… the brain starts to rebuild first. That creates a whole new set of problems that we’ll get to in a minute. Next organ that comes online are your kidneys. They are selfish and take almost as much as the brain. Until the liver starts screaming at them to freaking share their candy. Only after these three organs have been given what they need for the day will they finally share with the heart. Even though the only reason those selfish peeps can absorb anything is because the heart does its job. Full of love until the end is the heart.

Now the organs are all firing like well-oiled machines. For two to three weeks, the body still hoards nutrients out of fear that nutrition will suddenly be taken away. What this means is that fat is stored in ALL THE WRONG PLACES. So, as you can imagine, Ana begins to have a party in your brain. Everyone comforts you saying that this is normal. That it will stabilize and all that excess stuff will distribute throughout your body once your metabolism wakes up and your body isn’t in a panic to prepare for restriction. Not comforting. I remember thinking “You’re not the one who’s now having to wear size 1 pants. Or is getting arm flab. Or cankles!” Right. We aren’t but our distorted view of our bodies tells us just that.

If you’re lucky enough to have enough strength and support to survive the storage stage, your brain will fully come online. You’ll discover you can focus and think. Awesome, right?!?!? Nope. Because now you can FEEL! The thing you were starving to avoid. Here is where refeeding becomes an emotional battle. Because when you start to feel, your first instinct is to shut that shit down. And how do you shut it down? You guessed it. You stop eating. So now your heart is tearing you apart in an entirely different way. You are flooded with emotion. Feel out of control. Psychologically unstable. Suicidal. Wanting desperately to turn back to the safety of Ana. This is where the real work begins. This is the actual start of the recovery. This is what people DO NOT get. Starting to eat is not the beginning. It is the pre-game warm-up. When you begin to feel within your heart, that’s when the real work begins. That is when we need you the most.

I went back through my old journals yesterday and found something I had written to myself 10 years ago. It says, “One of the hardest parts of recovering from anorexia came when I reached a healthy weight. It was no longer apparent to the outside world that I was ill; everyone assumed I was “fine,” better. But inside I was still facing the same demons that led me to anorexia in the first place.”  And this is what I DESPERATELY want anyone who supports and loves someone with anorexia to understand. The time when we need you the most is oddly not when we are in medical crisis. We pay people to take care of that shit. We need you when you think we look better and don’t need you to be as vigilant anymore.

As I approach my “day of Frost”, a day when I think about what I wrote above, a day I am going to need my peeps the most, I thought of something that has been told to me over and over in the past year. “Michelle, you don’t have to recreate the past in the present. Just because it was that way last time doesn’t mean it needs to be that way this time.” Holy crap! Now that my brain is 60% online (Watch the fuck out people when it hits 100%!) I finally got what MK was trying to tell me! I DO NOT have to prepare for the terrible “day of Frost”. I don’t have to anticipate and worry about Sunday. Because I can choose for it not to be as it has “always been”. I can make Sunday different. Rewire my brain. To do that, I do have to think about Sunday. But in a different way. I need to set the stage for success and not a failure. This is such an important skill in anorexia recovery. To find a way to think positively instead of like chicken little. So… my goal is to think about what I’m going to do on Sunday to enjoy this 16th day of my journey towards recovery. I will not dread it. I will embrace it. Celebrate it. And find a way to find hope and joy in a day that I used to allow to shipwreck me. I will hold on tight to what I’ve done in 16 days and pull all the love from everyone from deep within. I will remind myself of how important it is to me to live, to thrive, to have a great life and to be able to continue to share the struggles of recovery but also the triumphs (for my Australian peeps and others). On the 16th day of my journey towards recovery, I AM GONNA TAKE MY POWER BACK!!!!

Maybe I will ride a bike on Sunday. And wonder who in the future will be thinking they must have stolen it. I will choose the “R” that leads to living. And add one more “R” to the arsenal………reframing. For it is with this “R” I will RECOVER!

Have you learned anything new about yourself after you got Diagnosed?

Take a Read, Comment to show your Support and Share if you can Relate.