I watch over myself like the guardian of a high-powered executive. Although the pay sucks and I’m anything but high-powered, I like to think I’m a pretty good gatekeeper. So I hoard my energy, get my rest, take the various drugs/herbs/supplements that are working at the moment, take care of the everyday tasks to be comfortable, and inspect myself endlessly. How am I feeling? Good so far? I’d better do the laundry, take a walk and write while I can. Still good? Great! I can go grocery shopping or keep studying Spanish.
Most days I lie down in the afternoon. Sometimes I take a nap. Other times I lay on my back and think. Sometimes I just play FreeCell for twenty minutes. Some days I don’t get up for hours. It all depends. And when it comes to a social life, I’m more like the harried chaperone of a future princess who would rather screw the stable boy (I know this is sexist and old-fashioned, but I can’t come up with anything better at the moment). Literally the only two people I will drop everything for are Dad and Katie. Everyone else will have to wait. Don’t fret, I don’t make people wait for long, unless I’m really sick and have turned off my phone and turned out the lights. Otherwise, at the very least I will text: Not feeling well. Talk to you later.
Needless to say, this looks a little hinky if you don’t understand what living with a chronic illness is like. It strains old friendships and puts a damper on new ones. But I’m the guardian of this body and mind for as long as I’m alive, so I have to be vigilant. And the one thing that gets my hackles up is when anyone thinks this is a choice. If by “choice” you mean conscious decisions to not expend energy that you don’t have so you don’t feel terrible, then yeah, it’s a choice.
The difficult part is acknowledging that some people require more of your energy than others. That’s good and bad. Sometimes the person works with you and you dread interactions because it is exhausting. I know plenty of people who feel that way about their parents. I have friends I love to be with, but we have so much fun that again, it can be exhausting. I don’t like this new habit of weighing every single activity and social interaction in units of exhaustion. The very act of sifting through all of this takes energy.
That’s another thing that’s hard to explain. From an outsider’s perspective, it looks like I’m doing fine. “Well, you took a walk this morning and attended a Zoom class, and you don’t look sick” means that I am doing a great job managing my energy. What they don’t see is all the things I didn’t do so I could do those two things.
One of the many ways Lyme sucks the energy right out of you is through social interaction. Texting is great. Emails are great. Talking on the phone is problematic, depending on how I feel and who it is. Zoom calls and classes are stimulating and tiring. Seeing people is always exhausting and I have to weigh what else is going on in my life before I commit to anything. If I have to go grocery shopping and then see a friend for lunch, it is near impossible to see people later, unless I’m looking forward to doing nothing for a few days.
I fight with myself a lot, the guardian clashing constantly with the part of my brain that wants to do whatever it wants. ‘Go ahead,’ it says, ‘eat that gluten-filled pizza/swim another 500 yards/go see that friend/take another writing class/go out late with friends/quit being such a BABY’. The guardian steps in and reminds me that this might not end well. Sometimes I simply don’t have a choice, it is something that I must do, like travel between Tucson and Denver, or go to the doctor. Then I make sure I have blocked off plenty of time before and after to rest.
This strategy means that currently I am more well than sick, the relapses farther apart and less severe, the recoveries, if not easier, more bearable. This is good, right? Mostly, except when well-meaning people comment that ‘now I can get back to normal.’ It used to vex me, too, this idea that I’m doing so well I can go back to how it was before. But that’s the whole fucking point! This is my normal now. I will always be forced to plug any activity into the energy formula. If I don’t mind anymore, why does it bother other people so much?
I would argue that it is precisely this energy output strategy that has led me to my current state. The tougher my guardian is and the more time I spend taking care of myself, the better I feel. Now that I have given my guardian full control, taking care of me first has become easier. I still argue with her. However, I know my guardian is the one I have to respect. She is one mean bitch, but she always has my best interests at heart.