When Chronic Illness Makes Having a Schedule a Luxury

I used to follow a pretty rigid schedule when I worked full-time, cared for my kids and attended college at night, in my own home. I was able to write events on a calendar and attend them, as planned. Ah, that was quite the luxury. I just didn’t know it yet. I didn’t know that one day I would no longer have that luxury. Ehlers-Danlos syndrome took that from me.


Now, I plan my day moment to moment. It used to be day by day but I’m now living by the seat of my pants. It’s an absolute nightmare for someone like me who likes being in control. Now I’m sprawled out – face flat on the floor, almost literally, with no sense of what it means to have a schedule, something I never used to view as a luxury. Oh, but it was. It was the most luxurious thing I had.

Back when I was planning my weekdays, weekends and jammed my schedule full of chores, sports and everything else that life and motherhood demands, I found scheduling a chore and a ball-and-chain of sorts. I got angry at it and cursed it. If I only knew then how lucky I was to have the ability to not only follow a schedule, but follow through, then maybe I would have appreciated its perfect way of my accomplishment of commitments.

This week I was reminded of how much I’ve been creating additional anxiety by still trying to adhere to a schedule. I guess it’s hard-wired, even after five years since leaving my corporate job.

My husband and a wonderful friend were there to remind me that although I can complete the tasks that make me feel better, more positive and are sometimes crucial, they don’t need to be so rigid.

Instead of a schedule, I created a simple checklist that contains only the most important tasks of each day. The tasks must seem all too simple to the lucky healthy humans who could slay my task list by 10 a.m., but their life isn’t my concern. To me it’s a challenge. I will stop holding myself hostage to an unrealistic schedule – the very reason I was forced to stop working.

daily to do task list

A weight was lifted when I changed my approach. Today, the first day of my journey, I completed each task without the additional stress of daunting and unrealistic time constraints. I also gave myself the ability to abandon a task if needed, without guilt. For those days my body needs rest, listening to it is equally as important.

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