"Well, the fatigue has been pretty severe," I said.

"Have you talked to your occupational therapist about that?"

"No…"

"She might have some strategies to help you pace yourself."

I held in a groan. "I don't have a problem with pacing myself. My problem is being able to do anything at all."

She made what I think was supposed to be a sympathetic "mmmh" sound, but dropped eye contact and changed the subject.

Living with Chronic Fatigue

Even the most compassionate people have trouble understanding true chronic fatigue and why suggestions like "have you tried pacing yourself?" make me want me to bang my head against that doctor's clipboard. It's just one of those things that's hard to get unless you've lived it.

Even I only know what my fatigue is like. No one else's. And I'm still learning how to manage my own. I know some of the ways—a peaceful morning routine, scheduled work, daily walks, iron supplements—but what works for me may not work for the next chronically tired person.

But there is one thing I'm pretty confident of: managing fatigue takes energy. Physical, mental, emotional, energy.

This is really, really annoying. How do I find the energy to manage fatigue?

3 Steps to More Energy

Here are three strategies that have been helpful for me:

1. Reduce anxiety
I've never considered myself to be an anxious person. But when my fatigue is at its worst and I don't accomplish all that I want to, I feel guilty, stressed, and anxious. These feelings then exacerbate my fatigue. It's an awful cycle. Getting out from under it requires an upfront commitment of energy, but a worthwhile one. See if these things make sense:

• I aim to keep my physical and digital spaces—kitchen, email, computer desktop—tidy. I try to get a handle on anything that contributes to mental clutter.
• I schedule work time. This means that when I'm working I'm working, and when I'm not, I'm not. This is especially critical if you work from home.
• I make time to tackle the items that are most weighing on me, the ones nagging me as I'm trying to fall asleep.
• I sometimes have to limit additional obligations for a stretch. Sometimes I have to put a pause on progress in order to recollect myself. 

2. Boost emotional energy
Just as you want to avoid things that sap your emotional energy, you want to find activities that boost it. Preferably ones that don't take a lot of physical effort (so going to the theme park for a day may not be the best choice). Look for little things that bring you joy. It might be drinking your tea from a pink unicorn mug instead of a boring white one. Or a morning routine that includes cuddle time with your dog. Identify these activities or rituals and insert them deliberately throughout your day. 

3. Study your body
Managing your fatigue not only takes energy, it takes knowledge. You need to study your fatigue like a scientist. A few questions to investigate: Do you respond positively or negatively to exercise? Do naps refresh you? If you overdo it, are you back to baseline the next day—or are you still suffering from the day before? How many hours sleep is optimal for you?

Don't just hypothesize. Test and record your results! At the very least you should identify the best ways to structure your day, but you may also stumble upon other contributing factors.
 
These are just a few strategies that help me to not only have the energy to manage my fatigue, but to know where to focus that energy. And even though fatigue is a daily challenge, I've learned to understand mine, and I've become both happier and more productive because of it.

Bethany Meloche is the author of How Should a Body Be?, a coming-of-age story about growing up in Michigan, falling in love, and learning to live with Charcot-Marie-Tooth disease. Her story has been featured in the Daily Cal, the Mercury News, Mountain View Voice, and Lower Extremity Review. She serves on the advisory board for the Charcot-Marie-Tooth Association and can be contacted through her website.