Protecting your energy doesn’t make you a bad parent — it makes you the best parent you can be for your kids.
Toward the end of Margaret Atwood’s dystopian novel “The Handmaid’s Tale,” traumatized protagonist Offred considers a number of ways she should protect herself from the people who will soon arrive, take her away, and decide, most likely terminally, her fate.
She thinks of the things she could use to defend herself, but ultimately she does nothing. “Fatigue,” she thinks, “is here, in [her] body, in [her] legs and eyes. That is what gets you in the end.”
In the 5 and a half years since my diagnosis, fatigue is the one, almost daily, constant.
Though I’ve had several exacerbations (a few of them debilitating), spurts of eye pain from nerve damage in my left optic nerve, and somewhat frequent bouts of numbness, weakness, and tingling, fatigue is my daily haunt.
Its intangible shadow, an unwelcome guest in my body, has glued me to my bed, keeping me from doing simple things like being present and playful with my children. I’m a high school English teacher, and some days are total slogs.
Even worse, some days I make it through the school day, but the second I walk through my own front door, whatever energy I had for my students disappears without a trace, leaving nothing to give to the people whom I love the most.
Learning to manage fatigue is an ongoing process. What worked yesterday may not work today. What works for one person with MS might not work for me.
I know MS is unpredictable and that managing symptoms is never guaranteed to bring relief. Still, here are a few things that have helped me manage fatigue while being the best parent I can be.
Playing chase or jumping on the trampoline, activities I used to do with my sons on a regular basis, not only winds me like it would anyone else, but it also ramps up fatigue afterward.
On the other hand, pushing my kids on the swing, playing boardgames, and going for casual family bike rides on mostly flat roads is not only enjoyable to me, it also encourages bonding — without exertion-induced fatigue.
I’m choosier about the things I’ll do with and for my kids. Hill sprints are out (thank goodness, I think). Art projects are in, especially if you’re a 7-year-old named Leo with markers to burn.
This doesn’t make me a bad mother — it makes me the best mother I can be for my kids.
When I’m fatigued and tell no one, I feel a mixture of anxiety and guilt on top of the bad physical feeling. When I can tell my partner, trusted friends, or counselor where I’m at and ask for help, the act of speaking up helps to alleviate some of the bad mental soup that my brain hungrily feasts upon.
I’m so glad the National Multiple Sclerosis Society recognizes psychotherapy as one tool to help those experiencing fatigue. Talking to a psychologist has been one of the best ways for me to process the complex feelings of living and parenting with MS.
The MS International Federation points out that “planned rest can give you more control over when you choose to be active and when you take a break.”
It seems like a no brainer, but if I can lay down and shut my eyes for 10 minutes, 20 minutes, an hour, sometimes two, I do.
Speaking concretely with my children about MS and fatigue is helpful. I can tell them that I’m going to rest, but when I’m done, I’ll go outside with them if I can.
Plus, sometimes kids just want to be close to their parents. When my kids want me to sit next to them while they read, watch TV, or draw, I can easily do that.
Flight attendants instruct passengers to put on their own mask before helping others. This advice is really practical for people living with MS.
Each day, I try to nourish my body with good food and enough water. No, water isn’t a cure (people with MS know all too well there is no cure), but it’s a basic first step.
Sometimes I’m fatigued from MS with or without water. Sometimes what feels like fatigue is simply me forgetting to eat healthy foods, hydrate, and limit caffeine.
In the same way I coach my children to drink water and get their servings of fruits and veggies, I need to coach myself as well. Similarly, though sometimes my body is maxed out, exercise — even light exercise — will fatigue me further.
If I can participate in exercise I enjoy, not only will I typically feel better and be stronger, I’m also more likely to have energy to take care of and enjoy my children.
The heat adversely impacts most people living with MS, but when the temperature is just right (or even cold) I prefer to be outdoors.
This is easy enough autumn through spring, but the summers can be brutal.
If my family is planning a trip to the pool, I make sure to have plenty of water, a huge hat to keep the sun off of my face, and I actually get in the water to stay cool.
When the temperature is cooler, being outside feels energizing most of the time. Nature isn’t everyone’s cup of tea, but for me, spending time outdoors is refreshing.
This isn’t a comprehensive list of things to do for people living with MS fatigue (the last thing people with MS need is a to do list anyway). Nor is it meant to be prescriptive.
Everyone’s MS is different, and what works for some won’t work for others. This mystery can be highly frustrating for people trying to figure out how their body works best on any given day.
On the other hand, the more tools we have in our toolbox, the more we can be empowered to figure out how to live our best and healthiest lives for ourselves and for our kids.
Erin Vore is a high school English teacher and enneagram four who lives in Ohio with her family. When her nose isn’t in a book, she can usually be found hiking with her family, trying to keep her houseplants alive, or painting in her basement. A wannabe comedian, she lives with MS, copes with a whole lot of humor, and hopes to meet Tina Fey one day. You can find her on Twitter or Instagram.