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When I Let Go of Planning My Whole Life With Lupus

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I’ve always been a planner. To do lists, goals, workout schedules, you name it, I planned it. In the past, I would lull myself to sleep by running through my list of things to do the next day. It was a kind of self-soothing mechanism that helped me feel strong, capable and in control.

Then I got lupus, and everything changed. Now with lupus, life can’t be planned. The illness is unpredictable. I never know how I’ll feel when I wake up in the morning. Will I have any energy or will I be deathly tired, heavy-limbed, my eyes burning and gritty from another night of insomnia? Will I have the strength to get some exercise? If I do, how long will my energy last after I’ve spent some of it? I can feel good one minute, and in the next, fatigue so overwhelming will hit me that I have to lie down.

After many years of living with lupus, I began to realize that the to-do lists that used to help me feel in control and powerful now, more often than not, created feelings of disharmony and anxiousness, causing me more harm than good.


Because on the mornings when I woke up feeling “off” (pain, brain fog, or debilitating fatigue), my to-do lists would hang over me, taunting me with whispers of self-recrimination, comparison, and fear of missing out (FOMO). Then, one of two things would happen. I would still attempt to do everything on my to-do list, creating more fatigue, stress, discomfort, and dis-ease in my body. Or, I would be unable to do the things on my list and be filled with guilt and anxiety as a result.

Over time, I learned that when I tried to push through and accomplish tasks on the days when I could barely think straight, they took four times longer than if I just waited, trusting that I would feel well enough to do the task another time.

Once I became aware of this paradigm, I made a conscious decision to shift.

I decided to let go of trying to achieve everything on my to-do list on days when my lupus felt debilitating. I’d allow myself to do only one thing or nothing at all. Instead, I’d rest and take care of my body. Doing this over time, I began to recognize and fully embrace that listening to my body and respecting its needs was OK. In fact, prioritizing self-care was more than OK. It was the most important thing I could do. The world would not fall apart if I didn’t get everything done on my to-do list.

Yes, I still make lists. However, often what I would have, in the past, tried to do in one day, takes a week or longer. Some items on my to-do list just never get done. I’ve learned to accept that. With time and experience, I’ve learned to trust, that what needs to get done, gets done. I can let everything else fall away.

I’ve learned the art of acceptance, flexibility and present moment awareness. By staying in the present moment, I can hear what my body needs and make choices to respect those needs. I’m thankful for the peace that has come with letting go of having to finish everything on my to-do list.

Now rather than running through a to-do list in my head as I fall asleep, I lull myself to sleep with a different sort of list. A gratitude list for all that I have and all that I’ve learned from living with lupus.

Getty Image by Ruhey

Originally published: September 19, 2018
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