We’ve all been there: The to-do list is a mile long, an unrealistic deadline is on the calendar to accomplish everything, and the kids are throwing the stink eye while you figure out what sort of dinner you can make with an open box of pasta, a frozen turkey burger, a tomato, and part of an onion.
Normally, I’m a pro at managing my schedule, but during some weeks, my body has different plans. Fatigue sets in, my limbs keep gaslighting me, and my monthly infusion decides to test my hostility limits. Did I mention I can’t feel the left side of my face?
Managing a chronic disease like multiple sclerosis (MS) can be a full-time job. Scheduling MRI scans, presenting for treatments, making appointments with the neurologist, battling with the insurance company, taking two trips to CVS because the pharmacy made a mistake — the list goes on. And, if I really want to show off, my body starts treating autoimmune diseases like collectors’ items — except there is no prize for people who collect them all.
So, how do I shift my schedule around when my body tells me no, without feeling like a complete failure? There are myriad ways, but I want to share three key factors that help me get through each week.
I admit I suffer from overachiever syndrome. I thrive on the feeling of accomplishment — superhero status — until my cape gets stuck in a fan and strangles me to death. Having a knack for shifting things around is key for anyone living with a chronic illness. Accepting that I can’t do it all is imperative. I can’t tell you how many times I’ve opened my schedule and moved things to the following day, or even the following week.
It’s important to always have a backup plan. This might mean having some ready-made dinners handy, creating a go-to chore list the kids are familiar with, or letting the family know my body isn’t cooperating and I need some quiet time to rest.
Most importantly, I’ve gotten really comfortable with saying the word “no.” Humans are preprogrammed to fear disappointing others, but what happens when I push myself too far? I end up worsening my symptoms, it takes five times longer to accomplish a task, and I leave behind a wake of hostility. It’s OK to reschedule that afternoon lunch meeting. Plus, the laundry isn’t going anywhere, and the dog can stink for one more week.
So I revel in the “no,” and there is no guilt in this dojo!
MyMSTeam columnists discuss multiple sclerosis from a specific point of view. Columnists' articles don’t reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content isn't intended as a substitute for professional medical advice, diagnosis, or treatment.