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.

Unwelcome guest

Yesterday was a whirlwind at work, as are all Saturday’s. It’s our turn (when we clean all of the rooms/cottages/other units to prepare them for the new guests) which means lots of work. I set up the two new people I was training at one condo, then went to the next to check it. I saw all the normal things.. beds made, empty fridge, no dust, well swept, etc. I then looked at the closet since I didn’t have an extra sheet set and found plenty there. Among the five extra towels, 3 random sheet sets, and probably a dozen games, I saw this on the floor:

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That, my friends, is a lovely scale. Not only does the scale exist, but it also is apparently a gift to the condo. My heart really sank just thinking about this situation.

To back up a bit, the place I work at (in housekeeping) has 9 weeks of family camp in the summer, and then various retreats throughout the year. The condos are almost always rented by people with kids. As a whole, the conference tries to promote togetherness and a getaway from the normal burdens of life.

Unfortunately, everyday living includes a heavy dose of diet culture influence for far too many people in this world.

I can imagine so many different situations where one could be hurt from this object. A little boy or girl decides that they should see how much they weigh, which turns into an innocent “who weighs the least/most” game. Someone going through a dieting fad checks their weight only to find that they’ve gained, and spend the rest of the week miserable and ashamed. A teenager finds themselves stepping on every single day to make sure they didn’t let too loose on their vacation.

There is no way having a scale there is going to help anyone. For one, dieting/weight isn’t something that’s a priority when you’ve come here just to build faith and enjoy your family. Diet culture is absolutely everywhere else and it’s good to have a break. It has potential to truly cause harm to those who already have vulnerability with their self-worth or weight in general. Even with the best intentions, weighing yourself on a different scale once doesn’t truly correlate to one that’s consistent (eg at your doctor’s office).

When I saw that scale I had a few major urges. The first was to weigh myself. Ed was convinced that I needed to see the number and there were no other options, despite how inaccurate it would be based on various factors. Directly after that came the desire to take the scale with me and keep it. It would have been so easy to just find a home for it in my car or secretly in my room. That would give me easy access at any time. I am not proud of those first two options, but that’s also just where I am right now. Third, and probably the best option, was to take the scale out and get rid of it (which is technically what we’re supposed to do with “extra” things in units, but that’s a whole different story). I ended up with none of the above, and I’m a little disappointed in myself for that now.

I could have been brave and fought against diet culture today by removing the scale. Honestly, though, I don’t think I could have just gotten rid of it. The reason I debated about bringing the scale out or not for so long is because I wanted to take it home. I can pretty much guarantee I would have brought it home, probably even weighed myself 15 times by now. I definitely was not strong enough to do the right thing, so I did the neutral one instead.

I’m not sure if I’ll be back to the condo next week, or at all this summer. I want to have the strength to put the best interest of our guests first and confiscate the scale. Not being able to now doesn’t mean I never will.

I know this probably doesn’t seem like some huge deal. To me, it is. This is just an example of how our obsession with diet culture and weight loss is so ingrained that we feel you don’t deserve a break on vacation. How ridiculous is that? If we can take a week of work off why don’t we take a week to fully engage and not focus on things that don’t matter? One small scale can truly have an impact on someone, and I think it has to be our job to think critically about them and the damage that often comes.

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.

In vs going through: the power of wording

I often pay special attention to words and how the choice of them can easily change meaning. I love writing, so this makes sense of course.

I’ve heard many ways others and treatment providers talk about recovery. Some say they are recovered, working on recovery, trying to recover, in recovery, and, most recently, a girl mentioned going through recovery. Those last two seem very different as I’ve thought more about it.

Being in recovery brings a picture of someone running a marathon. There may be twists and turns, hills, valleys, areas where they’ll need to walk, stations to fill up with water or go to the bathroom. What they’re doing takes tons of energy. They have to care for themselves in order to continue. Sometimes they feel like giving up, but they persist anyways. The end is a celebration, whether they PRed or took way longer than expected.

Going through recovery sounds like someone stuck in the woods and trying to get out. Maybe they have a guide or GPS, or perhaps they’re all alone. The ending isn’t defined. They may not have prepared for this at all, but they’re stuck and trying anyways. If not, they could be in the woods forever.

As I think of these two situations, I can dissect where I am. I’ve said many times that I’m in recovery. It doesn’t necessarily feel right, especially not when I’ve been specifically asked how long I’ve been there. Technically I’ve spent nearly 4 years in varying levels of treatment, but does that mean I was in recovery the whole time?

At this moment i think I’m much closer to the “going through” option. I feel so lost at times. I know there is a life outside the woods, but I don’t always fully believe it. I have tools, skills, supports, my team, IOP, etc but I choose not to use these things much of the time. It also makes me think of going through the motions of recovery which I certainly am. Therapy, challenge lunch, dietitian, work, IOP, work, repeat. Sometimes it feels like I’m just waiting for the next day of treatment and doing no work in between.

I want to be more in recovery, not just going through it. I am tired of being where I’m at. To me, taking that active step would mean choosing to work hard, putting (real) effort in, and remembering what life I’m fighting for.

So a few questions for anyone who reads this: what do you think about my interpretation? Have you considering what wording with recovery changes? Where do you feel you’re at? Also if you have other explanations/meanings I would love to hear your insights!