Two months ago, I started helping out with social media for The Belmont Goats, the nonprofit I helped create back in early 2014 and quit in early 2019, because it’s the herd’s tenth anniversary and I wanted to help tell that story.
In the ongoing navigation of resources versus demands that is being a middle-aged autistic adult with fatigue issues that might or might not be related to the autism, I’d already been living pretty much in and around my total spoons budget. It wasn’t clear to me when I started what would give.
Somewhat early on, I realized I was devoting too much time and energy to it, and so I’d put in place a schedule (as well as some guardrails such as which apps I had on which devices, if at all). I do a particular bit of stuff for their social in the morning, and then a particular bit of stuff in the late afternoon or early evening. I don’t spend any real time monitoring comments or messaging, as those can be handled by someone else.
In the end, it’s mostly felt like a straight swap: the spoons I’d spent on reading the articles and blog posts I saved to Instapaper, as well as those I’d spent on listening to podcasts, instead now went to the goats’ social media.
It didn’t feel great, having to stop doing other things I enjoyed, but helping out the goats bought its own satisfaction, and every now and then I could try to catch up a bit on the other.
Then this week I’ve had a number of unexpected and unplanned spoon shortages. A comparatively low-impact day that nonetheless left me feeling utterly exhausted. An evening walk that ended with me feeling shaky. Twice I’ve woken up feeling exactly like I do if I’ve hyperfocused on something all afternoon and forgotten to each lunch. Several bouts of attentional difficulty.
The other day I realized that back before I started helping out with the goats’ social media, I’d sometimes head all the way across town to visit the zoo. It might only be once a month, but it was an ongoing concern, and always a possibility at least to consider.
I’ve realized that right now I can’t even conceive of trying to go to the zoo. The idea almost terrifies me, because I can’t see how I wouldn’t collapse.
Something is out of balance. I swear that the spoon expenditure for the goats’ social media feels the same as that for reading articles and listening to podcasts. Either this is not in fact the case, or something else is happening. Something is using up more spoons than it should, or there’s a spoon expenditure for which I haven’t accounted, or I’m not replenishing spoons at the rate I was before. I swear that my level of exertion has remained the same, on balance, as has my diet.
Yet something is happening that is making things more difficult. Making me worse.
Earlier this month I gave a medical update, as my pulmonologist, which I have due to a lymphatic and pulmonary sarcoidosis diagnosis, decided it’s time we try to trace the reasons why I’ve had low lymphocyte/white blood cell counts for as long as I’ve had insurance—going back to 2018 and long pre-dating having a pulmonologist.
Maybe what that is has gotten worse. Who knows. All I know is that even today’s relatively productive therapy session left me light-headed, winded, and depressed.
Something is not right. Something about my body is not right. I hate that I can’t even think about taking a mental health trip to the zoo, and I hate that I don’t know if I’d even be able to do it if I both stopped helping with the goats’ social media and also stayed off the article-reading and podcast-listening.
I don’t like whatever this is, and I don’t like not even knowing what it is. It’s slowly threatening to make me miserable. I had a handle on navigating resources versus demands. I could feel where was the line. Now, I’ve no idea.