Shout out to everyone who didn’t go outside today. Or yesterday. Or tomorrow.
While I’m at home asking ChatGPT to clarify whether I’m a hermit or a recluse, The Banker lives a whole life outside of our apartment just to come home and find me flaked out on the couch where he left me. (TB: “Actually, you were still in bed when I left.” Rude.)
I left the apartment exactly once this week. My sole outing ended with a 350 metre walk that Google Maps estimated would take me all of 5 minutes. A ridiculous underestimate. I can’t remember the last time I walked 350 consecutive metres, but 5 minutes is the approximate time it takes me just to put on socks.
I’d thought about getting an Uber, but a last minute text from my ego told me it would be embarrassing to take a ride-share such a short distance. Home was just around the corner and I should at least try to make it on foot.
A triumph or a tragedy–depending on the mood I’m in when you ask me–my journey took 50 minutes and included 3 breaks where I sat on my rollator as passers-by stopped to ask if I was okay.
Despite how wrecked I’d felt when I got home, I gave myself props. I’d gone out and faced the world. I’d been (kind of) productive. Uber might have been the smarter choice, but I spent zero time judging myself for doing things the difficult, inefficient way.
Two days later I had plans to venture beyond the walls of my apartment again. This time, for my weekly adaptive horseback riding class. I was exhausted. My MS’y bowel was causing me distress and pain. Sometimes listening to your gut means knowing you can’t trust your gut. For the second week in a row I ditched my date with Scooter and stayed home. It was the right decision but it didn’t feel that way.
Never mind that I have valid reasons for canceling. Canceling regularly leaves me feeling like a bit of a loser, a word that’s almost too ugly to type. I’m not in the habit of negative self-talk, but I never feel more sorry for myself, than when I’m ditching plans and trying to remember the last time I left the house.
Maybe loser is a slur that cuts precisely because of what’s true about the word. I don’t actually believe that having MS makes me a loser, but MS definitely involves some losing. Of abilities. Of experiences. Of sleep.
It occurs to me that the cycle of making plans, canceling, then feeling guilty and lowkey pathetic could easily be broken by not making plans in the first place. But that doesn’t sit right either. Wasn’t it Tennyson who said, “Tis better to have made plans and canceled, than to never have made plans at all”?
If feeling pathetic comes from not measuring up to expectations, the simple solution is to set more realistic expectations. Still. It feels like a lie to tell myself I’m adjusting my standards instead of lowering them. It might not be obvious to the casual observer, but MS is extraordinarily hard work. Even a lower bar can take considerable effort to reach.
Preemptively refusing to commit in case I might later disappoint someone has just as much potential to disappoint. On the other hand, making plans is optimistic. I just need to decide that showing up most of the time or even some of the time counts as success. If I can give myself points for my intentions, for not completely checking out, and grace for however many times I need to cancel last minute, maybe I won’t feel so bad.
This is the part of the post where I direct you to the projects I’ve been working on. The receipts that prove I’m still in, and of, this world. (Even if I didn’t need to leave my apartment to accomplish anything.) I hope you’ll check them out. As for me, I have big plans for the upcoming long weekend.
On the pod – ICYMI
Tripping On Answers: Celebs, Sex, and Self-Motivation
We’re answering your wildest MS questions. From dishing about celebs with MS to spilling the tea on taboo topics like sex, fatigue, and everything in between. We’re diving deep. No holds barred.
What The Heck Is Smouldering MS?
My brilliant brain doctor Jiwon Oh of the BARLO MS Centre explains why your MS might be getting worse even if your MRI is stable.
The Pros And Cons Of Complaining About MS
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