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.

Last day of IOP?

I’m really scared going into today. As I sit here typing, the IOP team is deciding my fate. I learned yesterday that this would be the case. It’s been a long time of (in their eyes) me needing a higher level of care but avoiding it. I am 95% sure they’re going to recommend PHP and I have little fight against that. I could technically refuse, but I also just can’t. What choice do I really have when they’re not going to let me continue IOP?

I’m guessing that either today or Monday will be my last day, and then I’ll be forced to start partial. I’m so scared for a million reasons. It may be the least disruptive option for treatment right now, but this is going to be terrible all around. My parents are going to freak and yell and scream and try to refuse. I truly can’t afford it at all. Not only is it expensive (though at least covered by insurance), but I would have to quit working or cut back by a lot.  I don’t know how Im going to continue paying for treatmdent in general but that’s an added stress.

I’ve been trying my hardest to avoid answering the main question on everyone’s mind: can I make this on my own or do I need a higher level of care? I think the answer may be no, but only because of time constraints. I have 5.5 weeks until school and I guess it might not be possible to get to a good enough place by then. I haven’t told anyone this and can’t even accept it myself.

I want to shut down or skip treatment or not ever show up again. Part of me still hangs on to the hope that things will get better, so I am going to try. I am at least making myself stay for lunch. If I can’t handle everything after that I won’t push myself. There’s a lot of stress and hard decisions coming and maybe a break for the rest of the day would be okay.

My only hope is that somehow things work out and that it won’t be as bad as I think.

My “broken leg”

It has been a rough week, both with ED/treatment things and personally. I am starting to process it all and (attempt) to look at it all with a clearer mindset.

Monday started out pretty fun with our picnic at IOP. It was different in a great way from what I’ve been used to at meals there. We all brought some typical picnicy foods and went off to a cute nearby park. One of the two silos had a rock climbing wall, so I was just a little pumped for that. The meal was definitely challenging for most of us, but being outside made it feel lighter. Once we got back to treatment and reality, I started to shut down. I didn’t say more than a few words in the 1-2:30 group because I was too terrified of the dietitian appointment following.

I wasn’t entirely surprised with how hard it was, but I also didn’t fully anticipate what was coming. I drew up plans for a more wait and see approach. I wanted a few steps between now and partial. I wrote my excuses reasons, some legitimate, why PHP isn’t possible and asked a lot of questions. Part of me figured that she wouldn’t necessarily buy everything I offered, but I also wasn’t ready to hear what their plan was.

K put it right out there in the first couple minutes: her and R think it’s best for me to go to PHP, and I should actually set up an assessment and tentative start day ASAP. That was pretty much my worst fear confirmed. I fought back right away, of course, even once she brought logic into the equation.

She asked me what I would do if I broke my leg right now. Would I continue to work in housekeeping, ignore any doctor’s orders, refuse a cast, not do anything to reduce pain and swelling? Would I be mad at myself for not being able to just get over it with no help? Obviously the answer here is no. As a nursing student especially, I know how important medical intervention, rest, etc is when healing from an injury or illness. I’ve talked time and time again about how mental illness should be treated like physical ones (in terms of making it valid, deserving of help, etc), yet I am being a hypocrite and not applying that concept to myself.

I feel guilt, shame, frustration, anger at myself and the world, hopelessness, uncertainty. I have refused help this whole time, barely reaching out to any supports at all. I admit, I’m just not taking care of myself. As cheesy as it is, I think I do need to treat this relapse (yep, I said the R word) as if it were any other illness. I deserve and am allowed to ask for help when I’m no longer able to do this on my own.

Right now the plan is pushed out a week or two. I agreed to talk to my parents about supporting me and share about my struggle if we could wait out contacting FV. I know they didn’t want to at all, but my team agreed. Maybe they’re just doing it to appease me or maybe they’re hoping I realize that it isn’t a viable option in the end. I honestly don’t know. I’m not fully sure if I can do this or not, I just know that I have to anyways.

I’ve had a few moments since Monday where I considered the possibility and need of treatment. I was relatively close to emailing my therapist and asking if it might be a good idea to get an assessment at FV just in case. This wouldn’t be waving a white flag, mores so looking at my options. When I wrote and considered sending my email, I was a bit scared. My mom knew/knows I need support. It’s been okay. The thing is, I might need more than what I’m asking for and I am terrified of doing anything else. I guess partial could be some sort of safety net? I’m not sure why I am somehow about 3% okay with this. Maybe it’s my effort to fix my “broken leg”?

Whatever the case, I think I need to consider what recovery means, what steps I am committed to taking, how I can get there, where I want to be… I need to do this. I’m running out of time to get ready for fall semester. I want nothing but to graduate on time. Letting go of the ED (even just some parts initially) will be difficult, but maybe the future without it is worth the fight. I am trying to believe that an steps needed to get me to a healthy place are just like someone getting a cast, resting, and taking medications.

Defiant with a capital D

Sometimes, the eating disorder takes over and makes me act like a five year old. Yesterday was one of those times.

I am still on weight gain protocol. I hate it with every ounce of my being. This means that if I lose or maintain when I’m under this certain weight range, I will need to supplement. It’s frustrating for a number of reasons. Ed strongly objects because I can’t possibly be expected to gain weight. Boost/Ensure is simply gross. I feel like I’m being punished in comparison to drinking a supplement because I did something to deserve it (like skip a meal or refuse to finish something at treatment). There’s also the whole pride piece, especially when I have to do it around other clients.

Every day of IOP starts with a weigh-in. Yesterday, L the dietitian weighed me. We go way back and she knows all of my tricks/beliefs/arguments really well. It’s hard to “get away” with anything while she’s there. This leads to us butting heads quite often and definitely contributed to what went down.

After she weighed me, L couldn’t find my chart and subsequently wasn’t able to check my weight from Monday. Her suggestion was for me to have a supplement anyways based on how close it was to last week’s weight (which she somehow remembered a week later?). I immediately refused. I was NOT about to voluntarily drink a Boost when I didn’t for sure need it. So, I didn’t. I told her if she expects me to drink one she had to know before.

I thought I had been really sly about the situation and there was no chance that I would need to supplement. When L summoned me out of art I knew I was wrong. She contacted R/K and found out that I had lost weight since Monday. I immediately got super annoyed and tried to fight it. I was/still am convinced that this was a fluke. I had a lot of bloat going on Monday, so naturally I would have lost a little weight jut from that. Apparently, that doesn’t count as a good enough reason to bypass the supplement.

Once I realized that there was no getting out of it, I became mad at the world/IOP/L/whoever had the terrible idea to make Boost. I drank the damn thing, but did so slowly with lots of disgusted facial expressions and the slightest bit of arguing back. I shut down and didn’t ask for what I need because of it. I feel like I didn’t benefit much from the last 2ish hours of IOP, other than getting in a snack.

I’m now over a day removed and in a more reflective headspace. In those moments I felt so angry and completely ignored the whole recovery thing. Ed gets irrational and emotional to the point where it can halt progress or cause harm. I hate supplements and everything, but maybe it would have been better to just agree to one before L found out for sure. I’m not following my dietary goals, so the Boost is making up for what I’m lacking nutritiously. Of course the ED can’t accept that as truth, but at east I’m able to consider it.

I hate who I become when I’m stuck in the ED thoughts and behaviors. My entire focus is avoiding food, exercise, weight loss, etc. I’m not a fun person to be around and I get like a little kid who has tantrums again. Someday maybe the recovery side will take over and I’ll no longer be so apt to the regression. For now, I just want to recognize when the ED takes over these moments so I can find some way to stop it. I won’t be the defiant one forever.

“The day”

The funny thing is, I asked for this. I presented a more in depth take on my treatment history, specifically the summer of 2015, to my team some weeks ago. I skated by that entire summer. Did I need a higher level of care week 1, maybe not. But then NTS camp came and went. My level of struggle at that point, early-mid July, was enough for treatment. I fought hard. Legally, my therapist could do nothing except coax me into telling my parents since she didn’t have a release to talk to them. I used this position to run my own treatment until I hit a major crisis point. By mid-August, I no longer had the luxury of over a month to cushion between then and moving in to college. I had maybe 12 days by the time I told my parents that I was struggling hard and needed inpatient. I spent a week at the hospital then went to orientation a couple days later. That wasn’t truly enough since I ended up in residential a few months later. I’ll never know for sure; however, there’s a chance that it could have been prevented if I had gotten help when I was knee deep in the hole instead of consumed by Ed.

I know how bad that summer was. Ending my last week with a psych hospital stay really stunk, but everything that came before was miserable too. I looked like a normal person, acted like I was perfectly wonderfully fine, but really felt dead on the inside. I honestly can’t remember much of that time other than NTS camp (mainly from pictures). Someone was asking me at work how different things were the first summer v now and I couldn’t think of a whole ton. That makes sense considering I was passing out while cleaning showers and not at all fueling my body. The only other memories are from inpatient. I never would expect every day to be some amazing adventure, but I longed for a summer to look back on fondly.

Another huge goal from the very beginning was to get back on track and into a healthy place for fall. I always struggle at the start of semesters or other areas of big change, so I need some higher ground to fall back on. I took the recovery focused step to tell my team that I wanted an end date, a time where we would seriously evaluate my progress and see what should happen. Monday July 9 worked great, since it was after we returned from Ludington and about halfway through the summer. I basically promised to consider whatever recommendation they might have. Part of me now really regrets asking this of them at all.

For probably a month now my team has had parameters where, if met, I would have to be honest about my struggle. I never hit that but it had no effect on the number of times this was brought up. There has been a lot more serious talk lately, so many “if, then’s” and possible outcomes. I’m not sure why I still expected different today.

We didn’t take the hour therapy appointment to talk through my vacation and other ups/downs of the past two weeks. It was briefly touched on and then R started on the part I didn’t want to hear: she and K both think I would benefit from a couple weeks in partial. It isn’t a set in stone, this is happening for sure thing yet. I’ll have a week still to figure this all out. The first step would be talking to my parents about how I’m struggling. Ideally, I apparently should have done this weeks ago at least. The second step is PHP (partial hospitalization program – around 7 hrs a day). I offered an alternative of C. none of the above. I have a million and one reasons (excuses?) about why neither work. They don’t buy it at all. I saw that coming, of course.

I have a week to figure this out, or as I say get my shit together. There are a couple options here: accept their plan(s) and my inability to handle this, come up with an alternative that will actually be approved, or make some major progress. I felt about .03% hopeful until K squashed that with my goals for the week. They seem really lofty and not something quite possible. I’m not sure if she thinks I can do it or wants to show that I do need help. Regardless, I know this is going to require a lot more effort than I’ve been giving.

I don’t have a clue where things will stand in 7 days. I could be heading into a fun picnic lunch (super excited about this actually) and then a less painful dietitian appointment with therapy the next day. On the other hand, it could be devastating and hard and result in a call with the place I swore I would never be back to.

Yes, I can technically refuse any and all recommendations, but I don’t know that I have a ton of power in what happens from here. Even my best effort may not be enough of a push. I could be kicked out of outpatient.

I want nothing more than to keep outpatient, working 4-5 days a week, enjoying some freedom, and taking time to relax. This may be the best possible time to go through treatment and big change. Maybe, maybe, I might benefit from telling my parents or doing PHP. But it could blow up in my face and be terrible. I guess I won’t really know until something happens.

For now, I will be scared and stressed and unsure. It’s all I’ve been thinking of for nearly 14 hours. I need some sleep, and maybe motivation in the morning. I’ll have a nice full day of work to check out a bit and then star figuring this out later. I can’t promise myself that I can fight, but I can make sure to at least consider all of my choices and not just the one I like.

Compliance is an odd thing

In my recent post, I talk about being “that person” and the lengths I’ve gone to in order to make sure my struggle isn’t seen. Thursday, I realized just how much compliance ties into this.

Art every Thursday has followed the exact same pattern for nearly a month now: work on art projects for an hour, be reminded about needing my supplement at 2, pour into glass and show empty container, drink the damn thing, show empty mug. I’m used to it. I expect it. I do it without a peep.

I was pretty surprised last week when the art therapist thanked me for being so compliant with doing my supplements. I really don’t think I deserve recognition for this because I so strongly feel I need to do it. There’s not even the option of refusing for me (related mostly to being “that person” and perfectionism in general). Honestly the fact that I legitimately do have a choice is super foreign.

This wasn’t fully the case when I was first put on weight gain protocol. I argued and wanted to refuse. I would sometimes sit with a supplement in session for nearly the whole hour, not even looking at it. I eventually gave in because being told to leave IOP is slightly scarier than taking a supplement.

I’ve come to a point of acceptance. I know every Tuesday and Thursday will most likely bring a supplement. I can pretend all I want that it won’t happen or give into Ed’s promise that I certainly gained 5 pounds over a couple days. That’s BS and I know it. I hate this more than anything, but I’m starting to think that maybe my team is right. What if this truly isn’t an okay weight for me? What if this magic number in my head Ed has truly is unhealthy? It’s hard to know at this point. That means I have to blindly trust the process and my team (not an easy feat by any means!).

Does all of this mean I’m making progress? In some ways I think not. Compliance isn’t something I’m choosing because I agree with it. I deal with the supplements, even if the only reasons behind it include not being “that person,” putting on a brave face, avoiding being kicked out of IOP, and appearing to be a perfect person in recovery. Still, these reasons aren’t entirely strong enough to make supplementing my only option. I’m not being threatened to go inpatient or something. I could choose to refuse every single one and not care about treatment at all. I do care about my treatment, though. I don’t always feel like working on recovery, but I show up. I do the hard things. Right now, that means supplementing and every time I’m compliant can be seen as a small step in the right direction.