I’m Scheduling Free Time, Not Just Appointments

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by Lisa Weber |

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Do you remember playing “house” when you were little? I have fond memories of each of my little friends choosing a family member to imitate, and together we would act out the different family roles. Some chose the parental roles so they could control the narrative. I probably shouldn’t announce this to the world, but I always begged to be the dog. I had way too much energy to play an adult, and the idea of not having to listen to my “parents” was appealing to me.

I loved the idea of being something so far-fetched — a part I could play only in an imaginary world, crawling around on the floor, doing ridiculous tricks, and barking. As a dog I could do anything, even misbehave, and it was funny. I was allowed to stray far from the obvious script, and it was perfectly acceptable.

Pretending I have nothing to do

This week, I’ve decided to play an adult version of this harmless game, but I’m not selecting the role of a family pet. I will star as a healthy grown-up, free from the busy life of a chronically ill person.

Over the past two days, I’ve been constantly checking my calendar, as if I’m missing something. No appointments. No labs. No therapy visits. Just wide open afternoons. Since 2014, I’ve been handcuffed to my diagnosis. After a full day of work, I typically head straight to some kind of health-related obligation. This completely blank calendar feels unnatural.

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The only thing rarer than scleroderma is having downtime with the disease, so at first, I kept pacing around and rechecking my calendar. To stay in the familiar role of a busy person, I kept doing little chores here and there. I was wasting the hours away trying to fill them up because spare time has become so foreign to me that I didn’t know what to do with myself.

People think it’s a joke when I say being chronically ill is a full-time job. In all seriousness, scleroderma has kept me so busy over the last eight years that I’ve given up on hobbies and spontaneous activities throughout the workweek. Sometimes this is due to my extreme fatigue, and sometimes it’s simply because I’m always overbooking myself with important medical appointments. My employer generously gives me an extra six days off a year to use on personal days, and I always end up using them on appointments that are hard to come by.

Free time has healing powers

But today, I did something different. Too exhausted from a long day of work, I embraced the downtime. I came home and deliberately put my phone down and left all the to-do reminders waiting patiently on my calendar. I whipped up some of my favorite green tea with coconut milk and honey, and then I sat on the couch and drank it. Savoring every sip, I made myself present in the moment. Crushing any urge to schedule appointments or fill the moment by checking off chores, I just stayed still. I simply played the role of a carefree human without any appointments.

Having free time is a wonderful hobby, and I need to make more room for it. Just one evening of relaxation loosened the tension that’s been building up inside me. While I’m not cured, I do feel stronger now, recharged and alive. I’m enjoying my extra time so much that I’m blocking off the rest of the week to do more of absolutely nothing.

What a simple step I’ve been missing. It’s OK not to squeeze appointments into every open slot on a planner. Taking care of myself doesn’t only mean seeing doctors and staying up-to-date on my routine healthcare appointments. I need to remember that it’s important to make time for joyful things, too. Scheduling free time might not heal my organs, but it does rest my soul.

I decided to block off the rest of the week to allow myself to enjoy a voluntary pause. I’m taking a vacation from the extras always overfilling my schedule. For a few more days, I’ll pretend I don’t have an illness that demands a busy routine. Like a demanding little kid, I’m choosing this temporary role, and I’m not backing down.


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

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