Recently, David pointed out that I only posted on good days and that was skewing my description of life with Gastroparesis (GP). After a week of pretty damn horrible days, I am finally up for writing this post. I apologize in advance if it isn’t as coherent as my usual writing, but this is me on a more typical day that you have probably seen so far.

I rate my days on an A-F scale (also at David’s suggestion). An A would be a day where I have multiple hours where I forget that I have GP. An F means going to the hospital for nutrition and/or electrolytes. Last week I had my first two D- days. I also learned an important lesson.

Last week was an incredibly social week without much buffer in between for me to recover. Socializing takes a lot of energy for me. To start, I am deeply introverted. That doesn’t meant that I don’t like to socialize with people. I do. It means that I need some alone time to recover.

Then there is the fact that I am taking in about half the calories I need for my body to function. And taking in those calories is very uncomfortable and uses up a fair amount of energy on its own. I also struggle to balance my increased need for sleep with making sure I get my nutrition in me. Things only started turning around when I started waking up to eat and then going right back to sleep.

Lastly, I also pull together all of my resources when I see people. I don’t do this for you, I do it for me. When I see people I care about, I want to be present for them. And that takes the most energy. But without it, I would be completely tuned out and unengaged. And for that, I could stay home and save the energy. Bottom line? If I see you, even if it is not for as long as either of us might like, I still have to use my energy wisely.

This past week, I overestimated by abilities and it cost me fairly dearly. I don’t regret my choices. This weekend was not busy by design, it just turned out that way. But the lesson I learned was that I need to schedule 2 or 3 recovery days after seeing folks.

Here is just a peek into my busy week. Saturday I had breakfast with my in-laws and family friends. I spent the remainder of the day in bed in what I rated to be a C- day. Sunday was also spent primarily in bed and got a D+ rating.

Monday, we celebrated my brother’s birthday in the sukkah. I had rebounded a bit from the last day and a half’s recover time. So it scored a C-. Which, is a fairly typical mediocre day for me.

The following morning we once again met up with my in-laws, David’s aunt and uncle and a family friend. I crawled into bed once we got home and only emerged for acupuncture. The treatment was what saved that day from being a D- day.

A second acupuncture treatment on Thursday could not save it from being a D-day, although it did make me more comfortable. Friday was another D- day. Yesterday things started looking up and was a D+ day. And today is trending towards being a C- day.

When I have bad weeks like this one my life gets reduced to the absolute bare minimum. Sleeping, eating, saying hi to David and the cats occasionally. Rinse and repeat. I only checked my phone a couple of times to day to see if there was anything urgent that couldn’t wait. And I haven’t had the energy to shower in a week. I am really hoping that today is the day that I can finally pull it together enough to get clean.

Next weekend we have a good friend coming in to town. He knew not to suggest a meal, but he suggested a walk. I explained to him that everything came at a cost. If he wanted to make the most of my energy, I suggested we hang out in our apartment masked, with the windows open (weather permitting) and/or a HIPA filter and play games. We can go hang out at a local restaurant outside, but then I will get exhausted just that much more quickly and the recovery would cost be just a bit more.

I continue to be optimistic that the feeding tube will help my energy. My pre-procedure appointment is Wednesday and I am hoping we can get the procedure scheduled quickly after that. Then I just have to learn how to feed myself through a tube sticking out of my gut.

However much as I am looking forward to getting some more of my energy back, the miserable symptoms of GP will still be with me. I will continue to be subject to the whims of my body for the rest of my life.