“Kinda miserable”

As I was meeting with my dietitian on Monday, she ended up asking me how I think this really is going. I knew she didn’t want my BS “okay” or “pretty good” answer. There is no fooling her. (The woman reads my Recovery Record logs where I write what I’m actually feeling/eating, so she definitely can see through it all.)

I thought for a minute and ultimately landed on “kinda miserable.” I only realized after thinking about it for a couple days that this too is a pretty downplayed answer.

When I think of miserable, I start to imagine some situation so bad you would do anything to get out of it. Miserable is how I felt when I had swine flu, lost my grandpa, went through a hard breakup, and had my Nuss procedure. Those times in my life held lots of physical or emotional discomfort, to the point where even thinking about it brings a shudder. I would never choose to repeat those situations and many others I consider bad enough to call miserable.

So why then, did I use “kinda miserable” to describe how I’m feeling now?

I guess the miserable part fits to an extent. I did just provide K with a list of signs and symptoms of starvation I’m experiencing, and those are not exactly fun (unless being cold with bruises all over and thinning hair is your idea of a good time). It is definitely bothersome dealing with ED thoughts all day long. Sometimes I just wish that I could eat like “normal” people and not be so bothered.

At the same time, the eating disorder is 1000% providing me good things, too. If that wasn’t the case I probably could have recovered years ago. I think that’s where the “kinda” part comes through. I’m not sure if its more me being in denial or what, but I cannot say that I am fully miserable in the ED. I’m just not.

My answer here may not be the full truth, because I am not at a point where I’m willing to completely denounce the ED. Maybe I need more time. I can imagine my team asking “what will be enough, then?” to which I have no clue. Right now, it is enough to admit that sometimes, in some ways following the eating disorder has brought me discomfort.


I wanted to start with a catch up post, given that I have missed nearly 6 months of my life in this absence from blogging. I do plan on an update or two, but for now this was on my mind and I needed to write about that. I’ll be back with more soon!

NEDAW 2019 – Come as you are

Header_Come As You Are

As you may know, today kicks off National Eating Disorders Awareness (NEDA) week! I have been a huge fan of this movement since I first learned of it, because this is the one time a year I feel a little more justified spamming everyone with eating disorder aawareness info 😉

This year’s theme is “Come As You Are.” Here’s a blurb from NEDA about it:

Our 2019 theme, Come as You Are, highlights NEDA’s movement towards inclusivity in the greater eating disorder community and our goal of unifying the field of eating disorders. In particular, Come as You Are sends a message to individuals at all stages of body acceptance and eating disorders recovery that their stories are valid. We invite everyone, especially those whose stories have not been widely recognized, to have the opportunity to speak out, share their experiences, and connect with others.

We aim to start conversations with a variety of communities that struggle at comparable rates to those traditionally thought of as struggling with eating disorders. We hope to offer them an opportunity to share their stories, see themselves in others’ stories, and recognize that their experiences are valid and welcome, no matter where they are in relationship to food or their bodies.

So this NEDAwareness Week, come as you are, not as you think you should be.”


Given the theme, I thought I would start off the week by being vulnerable and honest about where I am in this moment. I would love to be able to come here and share all the amazing things I’m doing for my recovery, but that simply isn’t the case. I have felt a lot of shame in that. After over 5 years of treatment and more struggling, shouldn’t I just be healed already? I always imagined that answer to be yes for myself.

Right now I’m in a bit of a slump, maybe leaning towards relapse at this point. Okay it probably is relapse… My old friend excessive compensatory exercise came back after a pretty long hiatus. Along with it, I’m restricting food intake and excluding all but my safe foods. This has lead to my weight dropping from where it was stable for many months and implementation of the dreaded “weight gain protocol” whenever I have a dietitian/therapy appointment. (I’ll spare you the details on that one, but essentially it means lots of Boost/Ensure if my weight isn’t doing what it’s supposed to).

I am struggling. It’s many of the same issues I’ve been through time and time again, yet this also feels so new. I feel almost like I have forgotten how to get from here to a better spot, and even if I did know I have little motivation for follow-through.

One thing that has been super frustrating is all the medical knowledge (and treatment knowledge, too) that I have. I know what happens when you exercise without fueling your body. I can list off all the medical complications. I have experienced them in the past and now even. I know what kind and how much nutrition I need. I can tell anyone else how xyz is going to harm your body. I am so close to becoming a nurse, but I am an almost-nurse who wholeheartedly goes against what she knows to be true. I feel like a hypocrite and fraud all at once.

In this season, I am trying to be more gentle with myself because I deserve it.

This disorder has unfortunately been a big part of my life for many years. The fight isn’t easy at all. I am still here, though. I go to my appointments and do hard things. Being here now doesn’t mean I’ll never recover.

I wish my story was a bit different right now, but I truly feel sharing as I am is truly embodying what NEDA week means: ALL parts of your story, even these messy parts, are accepted here. Come just as you are. You’re all welcome here.

Hello again

It’s been a while.

I don’t honestly know what’s all been getting in the way of blogging. I’m busy and tired and there’s school, etc, but it’s not like I have never experienced any of this before. I think I can come up with one main barrier: perfectionism.

This isn’t new for me at all, yet it feels different now for whatever reason. I feel like I have a million and one things to catch up on and that I am a “bad” blogger if I don’t write about xyz first (in a timely fashion.) I’ve made promises before to talk about my treatment last summer, for example, and I continue to push it aside. I have plenty of negative/self-defeating thoughts swirling around about this. My perceived failure as a blogger is certainly feeding into that.

I love blogging and it hurts not being able to do so. I wish there was a way to take away the anxiety and obsession with writing. I think if I actually allowed myself to write in the moment without the perfectionist critic I might not just create posts but enjoy doing it.

I am ready to face my road blocks. I’m not going to promise anything at all in regards to a timeline or types of posts. That just opens up the door for more self-criticism. Instead, I will limit my editing to a minimum and only write about what I need. Here’s to being here more often!

Small update – one week out!

I can come up with a million and two reasons why I haven’t written, miss writing, “should” have written 22 posts by now, etc, BUT for now I want to talk about this.

As the title says, today marks one week post-discharge from PHP. Yes, that is just 7 days, not the 14/21+ I had assumed I would have by now. I’m not really okay with that, but I am going to be. It truly wasn’t the worst possible way to end my summer.

Here is a snippet from my post last Wednesday: “4 weeks, 19 days, 130 hours of programming, 93 meals and snacks, 3600 miles and 38+hrs driven. 
Countless tears shed. Feeling lost, overwhelmed, anxious, challenged, excited, shameful. Difficult conversations, meal plan increases, wanting to give up. Packets, lectures, assignments, and groups. 
All of the above? Totally worth it because I am now on my way to recovery. This semester isn’t going to start the same way last spring ended. PHP wasn’t at all how I envisioned my last month of summer, but I’m grateful for how things turned out and the lovely people I’ve gotten to know along the way.”

I mean those words, deeply and truly. What I needed was a program that would push me hard and make sure to fight ED even when I didn’t want to. I needed to be watched as I ate four times a day (and even the damn tray checks because I am not always that trustworthy..) I needed people who wouldn’t give up as I sat there stubborn and willful. Despite all the hardness, I also needed compassionate people surrounding me (staff and fellow patients!). IOP was too little, residential or inpatient would have been too much, and PHP was just right.

I’ve been back in the dorms since Friday and today was our second day of class. I am back here, but in so many ways I’m not where I left off last spring. My dietitian messaged me yesterday about the growth she sees in just the week I’ve been using Recovery Record again. I completely discount my positives all day long, but I want to end this post with some changes I do believe in.

  • I have eaten in the dining hall basically every meal I’ve agreed to (vs maybe twice a week prior!?!?)
  • I try to reach for a snack when I feel hunger cues
  • I’m trying to find small ways to make recovery a priority
  • I survived some seriously limited options in the dining halls – think 1-2 proteins/sides plus a salad bar
  • I’ve eaten some scary things (mostly out of necessity due to the above issue)
  • I am being honest on RR even when it sucks
  • I think I may have more energy?

This is most definitely a work in progress, and I won’t get into the hard part now because what matters is that I am trying. I am doing the recovery things and that matters.

Whirlwind

Holy cow, it has been crazy. I mean to update last Tuesday, and then Wednesday, Thursday, and so on until we get to tonight. I’ve been busy and exhausted, because I started PHP a week ago. I remember the beginning of this year. One of my top goals/intentions was to avoid treatment at all costs. Ironically, this quest to avoid has actually harmed my recovery. I have been so, so adamant against treatment that it took me a month (and the IOP team forcing it) for my to agree. I know hindsight is 20/20 and all that, but I actually wish I had listened, dangit.

I guess I may as well start off where I left off. Rather than make a separate post, I’m going to insert what I wrote and didn’t publish last Tuesday.


 

July 31st is a significant day in my life. It is my person’s day of birth (love you Livvy!) and also when I first went into eating disorder treatment.

4 years ago today, I was pushed into this huge world of what eating disorder treatment looked like. It was terrifying, confusing, frustrating, with some understanding mixed in.

If you had asked me 4 years ago where I would be now, I’m not sure that recovered would be the answer. Later on it definitely became the ideal future, but at that moment I was just so stuck into the ED. Treatment wasn’t optional and I was angry that I had to change.

Today I was back at the same hospital I started at 4 years ago. I’m not in clinicals anymore and there wasn’t support group. I had an intake assessment and tomorrow I will head back for my first day of PHP.

I cried the entire way there. It’s really hard to see that I’m in this spot again. I do feel a little hopeless and discouraged. How could I not, given how much I’ve wanted to stay strong/avoid treatment?

My disordered thoughts are very present right now, and one of the most pressing is “I am just in the same place as 4 years ago and that makes me a failure.” Yes, I am struggling enough to go to PHP. I am not in the same place, though. I can never go backwards in that way. I’ve grown, a TON. No amount of relapse can change that fact.


 

The past 6 days of PHP haven’t really gone quite as expected. I had plenty of expectations going in: irrational (I’m going to weigh 50 pounds more than everyone, I’ll have to eat a full meal plan right away, they’ll put me inpatient) and more realistic (it will be hard, I’ll have the same annoying nutrition groups, the adult PHP is terrible/dramatic). I also had an incredible amount of worries that didn’t stop at one full sheet of paper. I realized that probably wasn’t helping any and attempted to distract instead. Some things I didn’t count on happening:

  • Having a treatment center reunion since there are 3 of us from IOP there currently
  • A huge group, between 10-13! I know this is tiny compared to some treatment programs, but we barely fit in the one room and need to eat lunch in the huge room.
  • Being semi-terrified walking through certain units. The first day I recognized 5ish staff members from when I was in clinicals. For some reason, that freaked me right out and I’ve been ducking my head each time we go in the unit where I spent the most time.
  • The whole adult PHP room full. We actually didn’t have enough chairs today, so my friend and I sat on the floor. It’s pretty intimidating/annoying to have that many people staring at us as we come in and leave approximately 75 times every day. Luckily, we’re only there for 2-2.5 hours per day, which is more than enough.
  • Eating every 2 hours (sometimes less!!!). So I completely forgot about this part, or maybe blocked it out. We have breakfast at 8, morning snack at 10, lunch at noon, and snack at 2. Typically lunch and breakfast will both run late and that means even less time between meals. I knew volume would be hard, but I think eating this close together is harder even. I just get full by morning snack, then have to down even more. I haven’t been eating dinner until at least 6 because I’m still full/uncomfortable. I wish I could have started on an even smaller meal plan to try to reduce this, but I know that wasn’t going to happen. I really hope I/my body eventually gets used to it.
  • Not knowing a discharge date (or even a vague idea). My main psychiatrist did leave for vacation Friday, which was just day 3, so it is understandable. What bothers me is that there is no time frame whatsoever. My case manager yesterday said she had set up appts with my dietitian, therapist, and psychiatrist when she can’t tell me when I could be done. I’ve learned now that I have to avoid thinking about it for now, and just hear from my psychiatrist next Monday.
  • My defiant side coming out. Okay maybe I shouldn’t be all that surprised, but the ED is not taking any of this treatment BS. I have had urges to throw out food when no one was looking, nearly cried when the AT remembered to give us snack, secretly rejoiced as I saw my breakfast tray was lacking one exchange. I don’t do all I need for dinner. I’m not always doing “the work” part either. I don’t know, I guess I just thought it would magically be fine if I just took the leap to PHP. In reality, I am feeling quite a lot like 2014 PHP Emily.
  • The other patients are not too triggering!!!!!! That deserves all the excitement since it was one of my many excuses not to do partial. I was prepared for the worse and just haven’t seen it. Yes, there are others way thinner than I am, but I’ve found that I don’t necessarily want to be more like them. Behaviors are used unbeknownst to the staff, but I’ve kinda come to the conclusion that I cannot base my recovery off that. We are supportive of each other. Some don’t finish meals/finish Ensures and that doesn’t bother me too much either. Overall, it’s a pretty fun environment. We have some hilarious conversations and plenty of inappropriate ones too (also, all the swear words aha). That is so very needed in a setting like this.
  • I get to work with a psych resident one on one!! I saved the best for last. She and I have a 10-15 minute meeting each morning. I don’t get to see my case manager pretty much ever, so this has been a great time to process and really be open about progress and struggles. She’s been challenging me everyday and actually holds me accountable for those goals. I just feel very grateful I am one of the patients who get to work with her because I totally expected to maybe have 2 individual meetings a week.

PHP isn’t as bad as I expected it to be. I spend plenty of time wanting to run away and never come back. I think that’s pretty normal, though. I have come back each day to do the hard things anyways.

After all of the fighting and whining and complaining and driving my treatment team bonkers (I’m sure), I can semi/kinda/mostly admit it: I needed a higher level of care. I haven’t eaten this amount of food in a day for at minimum 6 months. That alone was never going to happen with IOP. 5x a week 8-3 means my world is invaded by treatment, but I can see this as a good thing. It means spending more time on recovery. I can’t ignore that need forever. So, while I can think of a million and one other activities I would enjoy more than PHP, I am here. I am going to be in a healthier place for school. Quoting one of my favorite dietitians: “I can guarantee you’ll find more happiness without the eating disorder, BUT THERE’S WORK.”


To finish this off, a few treatment goals that go beyond the very generic “improve healthy eating” or “learn coping skills” that we check off on our sheets.

  • Be able to tolerate the meal plan when I’m not in treatment
  • Get into the recovery mindset where I can put that first.
  • Push through the hard days because eventually they do get better.
  • Journal and make goals each day.
  • Do the little things, too – gratitude, worksheets, assignments, etc.
  • Come to a point where I am working for my recovery and not kicking and screaming every step of the way
  • Feel confident going into this next year
  • Don’t limit my exercise to compensatory only

Those are some pretty lofty, open-ended goals, but for a reason (of course I do have all the SMART goals on a small scale, though). Recovery is not black and white. I’m trying to be flexible here because I know how much feeling like a failure can harm me. I aiming for growth and not just perfection

Sorry for how long this has become, oops. It feels nice to have this all out here now. I hope to document this journey as I go. Processing it here is always helpful and something to look back on later.

I made it! – a little update

As a rule, I genuinely dislike taking breaks from blogging. I love to write. I love how this allows me to get my thoughts out. I love that I can reach other people. I love being vulnerable and sharing bits of my story. Sometimes, though, all of  that needs to be put to the side. The past couple weeks have been one of those times (for good reason).

The last post I made was on May 7. That was the start of one of the craziest weeks of my life. It consisted of: finishing a 6 page research paper in around 24 hours, writing and rewriting our last big journal for clinicals, attending IOP, shadowing a lactation consultant, packing up and cleaning my entire dorm (all last-minute, of course!), still making it to support group, studying, and trying not to lose my mind. I took my exams the next Monday and Tuesday, aced my maternal newborn ATI, and finally left campus at 6 on Tuesday.

I thought I would have time and energy to blog right away, but it wasn’t the case. I have napped more days than not since being home. I hate it but know my body is probably trying to tell me something. My brain feels like absolute mush, which definitely doesn’t help. I have all the ideas in the world, but without energy or focus I end up sitting at a blank screen most of the time. That’s finally changing because of work. I’ve always been able to think about different ideas/posts when I’m otherwise preoccupied. Driving is a top offender for this. I’ll have some brilliant idea but it slowly fades out by the time I have access to a means of jotting it down. Luckily, I have found time to type a note on my phone or even write all over my arm to remember bits and pieces of what I want to say.

Although I’ve found some inspiration while working, being there so much since coming home has left me exhausted. It’s been all kinds of crazy and stressful – from difficult requests to long hours and staying late more nights than not (I was officially scheduled 3 hours last week and worked 5 days/20 some hours). I come home and immediately sink into the recliner/my hammock. Naps and staying home are a big part of my life currently.

In the short almost two weeks since school ended, I’ve learned more and more that recovery is going to be the true full time job this summer. My team has already been on me about increasing exchanges, a meal plan change (that I’m expected to give a try..), weight gain protocol, and generally making strides away from the ED. They also share the beautiful future I could have without Ed. It’s nice to be reminded of the end goal because I can know what I’m fighting for. I don’t often see what could be when I’m in a struggling place.

I am so, so ready to be back in this space. I have lots more to share soon, but I just wanted to give a quick update to start off!

Halfway there!

The semester is officially half over and I’m on spring break! It’s crazy how long/fast the past 6 weeks in pediatrics were. I’m thankful for every second (okay, maybe not the stress) and it is by far my favorite placement in nursing so far.

I remember back to my first surgery, in 2009 when I was 14. I was naturally pretty terrified and uncertain about the decision. I’d never stayed in the hospital or had surgery before, and here I was about to have a major operation with 3 nights there. My experience was nothing short of wonderful. The staff was all amazing, especially my nurses. I have the fondest memories of how kind and helpful they were. Other than the whole pain thing, I enjoyed my stay. I vowed then that I would one day work in the medical field, but specifically at Devos. While my mind has changed a thousand times since then, I’ve now come to that same conclusion. I would love nothing more than to work in pediatrics (hopefully NICU!) in the very hospital that changed my life.

I’ll admit, I’ve cried more than a couple of times during this first half of the semester. I dealt with a ton of frustration, anxiety, some panic, stress, and exhaustion. There were late nights and some missed assignments. I made plenty of mistakes (which only added to my frustration). I lacked motivation at times. Despite everything, I ended Tuesday in the happiest of tears. I did it! I’m content with my grades overall and I feel like I put in as much as I could, considering my #1 job right now is recovery. It wasn’t an easy thing to balance, so I am trying to be proud of the accomplishment.

I am beyond grateful for peds rotation as a whole, my professors, the off unit experiences I had, and the floor nurses and patients. These 6 weeks confirmed a thousand times over how much nursing is my calling. Nursing school is tough. I’ve wanted to give up, but the interactions with patients and glimpses of the future I’ll have makes it all worthwhile.

After break, it’s OB time, and I’m getting pumped for that too! It’ll be weird to work with adults again, but I’m excited for the opportunity to witness birth and see more babies, of course. I already can tell I will like this area as well. Still, I think peds will hold my heart 🙂