Let me just put this up front, I completely overdid it this past week and I am paying for it. Both David and I knew it would be a stretch and I am trying very hard to pace myself. But with most of the scheduling being out of my control, I just pushed through knowing that I would pay at the end.
The week started with a bang. Longtime friends from Portland were in NYC and they popped over to say hi. They were the first friends that I have seen post tube, which means that I had much more energy for them than for our last visitor. Last time I pulled a Frida Kahlo and spent some of the visit in bed lying down so I could still at least listen to the conversation. This was a vast improvement as I was able to sit up and socialize the whole time.
Shortly after my friends left, I had therapy, which also uses up a lot of energy. At the end of the day, I was completely wiped. The next two days I had acupuncture where I learned two things. The first was a reminder that healing takes energy. Energy my body was already a bit stretched for. The second is that I need to set clearer boundaries with medical providers.
My acupuncturist got cocky over his ability to heal my stomach. He started talking about just getting my stomach to a place where it was stable, albeit still not working. Then he decided that he could completely heal my stomach. In just two treatments. When I told him that it hadn’t worked, he got frustrated with me because he didn’t pull off the miracle that he had been hoping for. But, he did get something happening in my stomach, but it backfired and now I am more uncomfortable than before he started. I am sure everything will settle down. Just now I need to find a new acupuncturist.
Remember that program that matches patients with rare diseases with medical students? Well I got matched with a 4th year medical student training to be a GI. We had our first training session on Thursday and then I spoke with my medical student for an hour on Friday. I have a lot more to say about the program and my student, but that will have to wait until I have a bit more energy.
Suffice it to say that I was a basket case yesterday. I literally woke up crying. Today is a little better, so it is just a matter of time before I get back to my status quo. As much as the exhaustion irritates me, it is such a relief to know that my stable nutrition means that I can get through the exhaustion given the time.
I have reconciled with the fact that this is going to be a strange and unsatisfying Passover. But given that this will be the 4th in a row, I think I can handle it. Thanks to my brother, I have finally been able to connect with a community that truly gets my struggle. My brother introduced me to a Facebook group called “A Mitzvah to Eat.” These are people like myself whose health issues force us to do Judaism differently than we otherwise would, all things being equal. And while their issues may not be the same as mine, it has been truly comforting to read the comments from people who just get it on a different level.
I have been so compromised by malnutrition that I didn’t even know to expect some of the barriers and hurdles that I am encountering as part of my recovery. At least now I know that as my body heals, different issues will emerge, often before I have the brain capacity to deal with them. What I clearly still need to learn is to pace myself as much as possible. And if I cannot do that because of circumstances beyond my control, to at least leave an adequate commitment-free period afterwards for recovery. Wish me luck, because clearly patience and moderation do not come naturally to me.