Today makes my third day of Partial Hospitalization, and I already know I need to stay more than a week—and I’m mostly okay with that, but not sure whether my body will allow it.
Looking back at the last few months, I’m starting to see that, as usual, my psychiatrist has been right in saying I need to be here. As it turns out, it doesn’t much matter why I’ve lost this much weight below my healthy place because I’ve ended up with the same physiological consequences and even some of the distorted thinking of anyone with an eating disorder… My hair was starting to fall out.
We can make hypotheses about my dysautonomia and my migraine nausea and my loss of appetite from ME/CFS and residual brain inflammation as causes, but at the end of the day I still need help relearning how to eat. What I was doing on my own at home wasn’t working.
One of my biggest fears about this program has been that I would fail it because of my medical conditions. And I was afraid that the whole thing would just be a more embarrassing way to fail at eating enough with multiple strangers to observe it.
“I feel like I’ve failed by ending up here,” I confided in my dietician today. “I did IOP two years ago, and now I’m back in a higher level of treatment.”
“You didn’t fail,” she assured me. “No one could come out of what happened to you on their own.”
Once someone who’s ever had an eating disorder gets below a certain weight, primal survival mechanisms cause the disordered thoughts to come back and aversions to food to develop so that your hunger cues shut down. Thousands of years ago, this was a protective effect to make times of famine easier to bear, but in our modern world, it’s a snare.
This is why I have to be here—and why I feel I can’t leave until I no longer need supervision and nutritional supplements to take in an adequate amount of nourishment. Yes, just as I worried, I’m the one eating only some of the lunch and getting poured a Boost because I can’t finish. I’m “failing” at lunch—but I’m winning by fighting back and getting up to try and try again every day. And you know what? Everyone has been nothing but supportive when I need that Boost. They celebrate with me when I meet my personal goal of finishing just part of the meal.
But I don’t trust myself to discharge this weekend, go home, and be able to gain the ten (or more) pounds without structured accountability. My body simply isn’t working well enough yet, and I doubt that will change in a few more days.
Unfortunately, eating isn’t my only problem.
Today, I decided to try a yoga class—very bad idea. This class is about at the intensity of the Tai Chi you see folks doing in nursing homes, and I lasted all of ten minutes before complete exhaustion hit. I am now in an ME crash that will probably last the rest of the week.
The staff had told me I was welcome to do a version sitting, or just sit and practice mindfulness, but I missed moving my body and thought it would be light enough for me to give it a try—and it sure did feel emotionally good until I reached my threshold. All I can say is at least now I know where my physical limits are.
Nevertheless, it doesn’t bode well for getting through a whole week unscathed, let alone two or three, if I’m crashing after the third day. And my heart-rate has been all over the place this week with resting rates as high as 120, so it seems like my body is struggling. This is what I was afraid of.
And yet I keep coming back to my thoughts on the sidewalk outside the clinic:
How will I turn around the weight loss if I leave?
I’ve come to the conclusion that, until I’m truly ready, I have to do whatever it takes to stay.
Admittedly, I’ve not been going to bed early enough to be getting up at the ungodly hour I have to in order to be at the clinic on-time. I’m a bit sleep-deprived, which always lowers my crash threshold.
A lot of it is because I’m trying to continue my consulting job and make progress on the latest case in the midst of all of this. My colleagues know I have a chronic illness, but I haven’t worked up the courage to tell them about being in a PHP. Perhaps it’s too much to work a bit in the evening and get through all of that therapy during the day. But maybe if I find a better balance and get more sleep it will be okay.
Even so, I know I have to keep in mind that getting better is the most important thing. It needs to be the priority, but that’s not easy when you are young and really want to live your life now. Will I have enough energy to continue the program? Part of it is up to me and how well I take care of myself. And here’s to hoping this crash passes quickly!
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8 thoughts on “PHP Day 3: “You Didn’t Fail.””
If you don’t mind me asking, what exactly does PANDAS cause for you that makes it hard to eat enough? Is it that you have flares after eating, or just have low appetite, or something else?
I do know that for a while when I had Lyme, I had a lower appetite than I used to, though nowhere near where it prevented me from getting adequate nutrition. Then after all the antibiotics, my gut flora got messed up to where I am much more likely to have worse mood symptoms after meals. Generally I feel the best first thing in the morning when my gut is empty. Plus I’ve picked up many, many food sensitivities (though I’ve gotten over a lot of those in the past year and a half), and those made it REALLY hard to eat a balanced diet for a long time without triggering mood disruptions.
However, it sounds like in your case it might be something completely different going on… like a fear of eating in general (in the absence of actual *experience* of food making things worse)?
PHP’s sound like a great alternative to inpatient, but very hard work. You were right not to discharge yourself before feeling ready. You got this!
Thank you! It’s hard, but I’m imagining inpatient would be even harder. So I’m hoping I can avoid that by staying in PHP longer.
Inpatient is never pleasant, I hope you can get the help you need with the PHP!
Wow! It sounds like you really have found a good program. My insurance will cover PHP, but the closest one to me is two hours away from my house, and the PHP programsays i need a higher level of care. Of course insurance won’t pay for residential. Ray
That sounds very unfortunate. I feel like the PHP should let you try since insurance won’t cover residential. I hope you figure something out!
So proud of you! My boys and I are seeing our new specialists too and a whole new treatment plan for them in this new decade. May 2020 be superbly healing for you and them. I have a great feeling about your progress, continued recovery and ours too. You’re always in my prayers!
Thanks so much! And good luck to you all with your new treatment plan.