Energy Management for People With MS
Before my MS diagnosis in 2013, I worked as a creativity coach. I taught poets, novelists, and artists the necessary skills to launch, maintain, or reclaim their creative lives.
I abandoned that work because of relentless fatigue later linked to MS. Afterward, however, I discovered I could still apply these skills as a newly diagnosed person, especially when it came to managing my physical and mental energy. Energy is a finite commodity for people with MS. But managing this limited energy is not only possible but worthwhile.
Beyond the spoon theory
People with MS may already be familiar with Spoon Theory, which suggests that chronic illness may force us to spend our energy too quickly. While this may be true, Spoon Theory doesn’t really solve this dilemma. For those answers, we might benefit from studying our natural rhythms instead.
Circadian rhythms for the win
These biological rhythms impact all living things. Human beings sleep, wake up, eat, and engage in activities at specific times of the day chiefly due to patterns established by the light-dark cycles of the planet. Circadian rhythms vary from person to person. This is normal. While some people feel energetic in the morning, others don’t get a burst until later in the day, and still others come to life only after sundown.
Disruptions to these rhythms are common (jet lag is a prime example), affecting us physically, emotionally, and mentally. But we can usually reset our rhythms after a good night’s sleep and through good habits like morning exercise and good sleep hygiene.
Tips for energy management when living with MS
Once we recognize our own circadian rhythms, we can more effectively use them to manage our energy.
I discovered my rhythms by keeping an energy journal for a month. For one month, I tracked my energy — both physical and mental — as it fluctuated throughout the day. I used a calendar book with hourly slots which I filled in with highlighter pens. Blue highlighter illuminated the times I felt physical fatigue, sleepy periods, and cognitive fog. Pink highlighter marked the hours I felt focused, wide awake, and physically energized.
I tracked meals, bedtimes, rise times, and other activities to see if they were linked to my energy levels. Patterns emerged. I found my personal energy levels peaked between 3 pm and 8 pm. They fell to their lowest levels between bedtime and 10 am the next day.
Matching rhythms with activities
Knowing our rhythms can guide us in how to best use our “spoons.” For instance, people with MS often burn energy taking a shower. (I do!) However,
- a morning person will spend less energy showering before breakfast
- a night owl may skip one until bedtime
- someone with late-breaking energy might prefer a late afternoon shower
When planning your day, consider the type of energy you’ll need. Is it mental? Physical? Then time your activities to match your energy levels whenever possible.
For me, busy work (answering email, reading the news, doing laundry) is better done in the morning: it’s less taxing mentally and physically. I leave my “brain work” to the afternoon. To put it another way, I found that the article that took me four hours to write in the morning literally took me half that time in the afternoon.
By matching your energy levels to your activities, you really can accomplish more while using fewer “spoons.” Some gurus call this "working smarter, not harder.”
Do what you can
Still, let’s be real - sometimes, MS wins. Sometimes, the fog never leaves. Sometimes, it's all you can do to get dressed in the morning. (Let's face it, those are days when showers don't happen at all.)
One of the lessons I passed on to my creative coaching clients completely applies to life with MS, in this regard. It’s really simple: Do what you can.
Some days, I can't write because of vision problems. I used to agonize over this. I'm used to writing on deadline. But here's the thing: Anxiety only burns more energy. Now I just take a break. For a day, a week. Whatever it takes. Without regret. This isn't being lazy; it's practicing self-care.
Bottom line: Be flexible
MS may strive to ruin our best-laid plans, but flexibility can keep setbacks to a minimum. Here are some things that have helped me.
- If you only have energy for easy stuff, do the easy stuff until you’ve recharged.
- Try again! MS may slow you down, but you can always reschedule.
- Rethink the necessity of certain tasks. Why burn good energy unnecessarily? Learn to let go of unnecessary obligations.
- Ask for help. Nobody has the energy to do “all the things.”
- Better yet, just say 'No'. Spending too many “spoons” to please others can rob us of our energy. It’s not selfish to set boundaries...it’s self-protection.
Have you experienced any of these vision symptoms? (select all that apply)