I’m an optimist, but sometimes Parkinson’s fatigue is too much

Having a chronic illness is exhausting in so many ways. I’ve described Parkinson’s disease as being exhausted physically on a cellular level. It’s not like being tired after running a foot race or sleeping poorly the night before. On a molecular level, it’s like my cells and neurons are incredibly, unrelentingly tired just from trying to keep myself upright and move through the day.

Then there’s the mental exhaustion. I’m constantly thinking about my day before it happens. When do I take my meds? Where will I sit? Will it be noisy, meaning that I’ll have to work to be heard? How far will I need to walk? Are there stairs? With worrying about everything and then actually having to do it, it’s like going through a day twice.

There’s also emotional exhaustion. On the one hand, I’ve cultivated an optimistic persona. Generally, I am optimistic. I like being a voice for this community, inspiring others, and being a good soldier. But being a strong voice and cheering everyone on is exhausting, too.

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Even writing this column can be exhausting. Don’t get me wrong, I adore this job and the community, and my bosses are amazing. They are inspiring, caring, thoughtful, and endlessly accommodating and considerate. But I also have a full-time job in addition to this one. On Sunday mornings, when I sit down to write, I’m often inspired by some idea or event from the previous week. But sometimes, like today, my brain just wants to say, “Nope! Not gonna function right now.” Even my hands tell me they’re tired and don’t want to type.

I often add the caveat “but I’m still lucky” to thoughts like those above — and I am. I have two jobs I enjoy and can do from home. I have family, friends, and good doctors. But as a good friend tells me time and again, I’m allowed to just be tired without having to justify it. So, today, I am. I’m crying uncle, just for a bit. I’ll be back at it tomorrow, and next week, and next year.

But today, even this column is a little shorter than usual. It’s a bare-minimum, get-through-it kind of day. We all have them. So I need to ask for your help.

You know how in a choir, the group can seem to hold a note forever? That’s because a choir works together and listens to each other, and they can tell when one of them needs a breath. They don’t all take a breath at the same time, because then the sound would stop. Without a perceptible gesture, they know when someone needs a break, and the choir carries on making its beautiful sound.

Today, I’m taking a breath. You can be the optimist, the fighter, the voice for this amazing community. The strong one. I know you can do it, and I’ll be here breathing, ready to join the song again in a moment.

Note: Parkinson’s News Today 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 another 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 Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.