Nov 26, 2017
TRANSCRIPT
This is Episode 016 of Glioblast-O-Cast. How do I keep my energy up and manage fatigue?
Hello, and welcome to Glioblast-O-Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode, I will answer the question, how do I keep my energy up and manage fatigue. As usual, a couple helpful links are on my show page.
One of the things I wasn’t really prepared for with my recovery from brain surgery and cancer treatment was how my energy would be affected by fatigue.
I knew that chemo and radiation could be taxing, but I kind of expected as I recovered that I would regain energy and activity levels that were on hold during surgery and treatment. I’ve seen many fellow glioblastoma warriors who continue working and doing daily chores, and that does at times make me a little jealous.
But we all have our own path to follow and we can’t expect to have the same experience that others have. My experience was this: once I managed to get completely off the steroids, my energy did fall and fatigue set in. Building it back up has taken me to to try different approaches that were not on my go-to list before surgery.
I found help with a great physiotherapist who has been helping me to change my thinking and understand what I can accomplish by approaching my everyday tasks in a new-to-me way.
Before the brain tumor, exercise would be in a concentrated session. I used to take a one hour boxing class. But now, that chunk of time focused on working out will leave me useless for the rest of the day.
I’ve had to learn that my new normal involves exercise and activity spread out over the day. Fifteen minutes of activity followed by ten minutes of rest. And when I do that, I’m able to function more consistently throughout the day.
Another idea that has helped is the Spoon Theory (see my show notes for a link). This is a simplified idea about how we use energy and it applies to many medical conditions.
It says we have a certain number of spoons per day and each activity uses a certain number of spoons. And once the spoons are gone, our energy is done. It’s a very generalized idea, but the basics are there. Really, it’s about learning new limits and abilities and what will tax our energy and how to manage that.
A big tool for me in managing my energy is napping.
I find that I tend to wake early in the morning but now run out of steam just after lunch time. If I force myself to plow through the day, I can become panicked or confused, maybe even cry at the smallest upset. But if I break up my day with a good nap, I wake up and can re-focus and have a productive afternoon.
For me, I tend to take long naps of on average two hours. Certainly not a power nap. I see it more as a continuation of my disrupted night where I probably got only five or six hours of sleep.
That’s my new normal. It’s certainly a lot of adjustments. Like I’ve had to accept the fact that my sleeping and napping can be very deep. Since my surgery, I don’t think I dream when I’m asleep. Maybe now and then, but I don’t seem to remember any fantastic, crazy dreams like I used to have before the brain tumor.
And sometimes when I wake up from a deep nap, for those first few moments I am a blank slate. I might not remember where I am on the sofa or the bed, who I am, what day it is, if it’s morning, noon or night.
But that quickly dissipates and I get my bearings and can move on with my plans for the afternoon.
So that’s how I manage energy and fatigue: a combination of exercise and a good nap schedule.
Be sure to check out my show page for some helpful links.
Thank you for listening. This has been Glioblast-O-Cast Episode 16.
Theme music for Episode 016: “Blue Ska” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
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The Spoon Theory: by Christine Miserando www.butyoudontlooksick.com
Spoon Theory http://me-pedia.org/wiki/Spoon_theory
National Sleep Foundation http://sleepfoundation.org/sleep-topics/napping
Mayo Clinic: Napping Do’s and Don’ts for Healthy Adults www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/napping/art-20048319