As a parent, you’d do anything for your kids. But if you have relapsing-remitting multiple sclerosis (RRMS), you can’t.
RRMS is just what it sounds like — a form of MS where your symptoms go away, only to flare up again. Each relapse brings new or worsening symptoms. You might rarely have a flare or even go years without new symptoms. Or you may have more frequent attacks that require treatment.
Some of the symptoms of RRMS, such as blurred vision, memory loss, or confusion, may come and go, while other symptoms, such as fatigue, can be very draining. If you’re a parent, making meals, going to playdates, driving to school, or attending sporting events can not only be challenging but also feel impossible — but they don’t have to be.
Learn ways to manage your energy and parent with MS-related fatigue.
MS Fatigue vs. Regular Fatigue
About 8 out of 10 people who have MS experience fatigue. Unlike regular fatigue, where you normally feel refreshed after a full night’s sleep, MS-related fatigue (lassitude) can make it hard to get through the day.
“My patients commonly describe it as if they are dragging through lead,” says Jenny Joseph, MD, a neurologist and director of the Multiple Sclerosis and Neuroimmunology division of Wellstar Health System in Marietta, Georgia.
MS-related fatigue usually:
- Happens every day
- Occurs first thing in the morning, even after a full night’s sleep
- Gets worse as the day goes on
- Is worse in hot temperatures
- Comes on easily
- Interferes with daily activities
- Takes longer to recover
Other MS symptoms, such as muscle spasms, heat sensitivity, and bladder problems, can disrupt your sleep and worsen fatigue. In many cases, it can limit your ability to function during the day.
Budgeting Your Energy
Different tasks require different levels of energy, and they’re highly specific to each individual. An activity that may drain one person might not drain another. One way to find out how much energy you need for activities each day is through an energy budget.
Create an energy budget
An energy budget is a series of techniques to save your energy for your most important tasks.
Madisen Redar, a registered and licensed occupational therapist at the Cleveland Clinic in Las Vegas, Nevada, helps patients with MS to create energy budgets.
“Typically, we have our patients start by tracking their perceived level of fatigue on an hourly basis for a few days using a key we provide so we can track energy peaks and valleys,” Redar says. “We then analyze the times of day they have the most energy and when they have the least energy, as well as review the activities they were participating in when they had changes in their energy levels.”
Redar’s team then uses this information to help patients plan their activities — and their day — accordingly.
You can track your energy during almost any activity, such as bathing, household chores, cooking, or working. Your occupational therapist can help you create an energy budget. If you don’t have an occupational therapist, you can track your energy levels using several apps, such as:
- More Stamina
- MSCopilot
- Floodlight MS
During times of relapse and remission, your energy levels can change. You can adjust your energy budget to raise or lower your energy demands for certain tasks.
Tips for Parenting With MS-related Fatigue
Parenting takes a lot of energy — whether you’re chasing toddlers, making meals, getting kids ready for school, or listening to adolescents and teens.
“Parents already have many demands on them, and MS provides an extra challenge with MS-related fatigue,” says Joseph.
Here are some ways to help you balance parenting with MS-related fatigue:
Talk to your children
“MS-related fatigue presents unique challenges to patients because it is an invisible source of disability in MS,” says Jonathan Carter, MD, associate professor and consultant in the Department of Neurology, MS and Autoimmune Neurology Division, Mayo Clinic Arizona. But even though you may appear fine to others, you may find that your fatigue makes it hard to function.
Joseph says that’s why it’s important to talk to your children openly about your condition. “We often put on a brave face for our families. Sometimes it can be hard for family members to realize that their loved one is struggling, as fatigue may not give an overt sign. However, patients should be honest and explain what is going on.”
Plan ahead
Because MS symptoms such as fatigue can flare up or worsen with little notice, plan ahead on days when you feel well or have more energy. Plan meals or lay out clothes ahead of time to make it easier on days when you need more rest.
Develop routines
Routines — such as eating meals as a family or having family time in the evenings — can help children feel more stable when you’re living with an unpredictable condition.
Get organized
Brain fog and fatigue can make it hard to remember important dates and appointments. Calendars, alarms, and online scheduling tools can help you stay organized.
Eat a healthy, balanced diet
A balanced diet may help lessen many MS-related side effects, such as overheating and hot flashes, both of which can increase fatigue.
Get better sleep
When you’re living with MS, this can be easier said than done. MS symptoms such as muscle aches, bladder problems, and heat sensitivity can make it hard to fall asleep and stay asleep, making your fatigue worse. But small changes, such as turning off electronics about an hour before bed or adding a lightweight blanket or cooling pillows to your bed, may help you sleep better.
Ask for help
Everyone needs support. Ask for it when you need it. Carter says allowing your children to help you with age-appropriate tasks can help them feel like they have some control over an otherwise uncontrollable situation. Research shows that family support can help lessen the emotional and physical burdens of MS.
If your children are too young to help with tasks like household chores, contact your MS Care Team or local MS Society for a list of organizations or local resources that may offer free or affordable services.
Use assistive devices
Several tools can help you manage daily tasks when you’re living with MS. From daily household chores like meal prep and getting dressed to activities like walking or driving, assistive devices and mobility aids can help you manage parenting tasks when MS symptoms like fatigue make it difficult.
Your MS Care team can share a list of resources that offer assistive devices and mobility equipment for rent or purchase.
Make time for self-care
As a parent, you spend so much time and energy making sure your kids are OK. Be sure to extend some of that care and concern to yourself as well. Here are some things you can do to boost your own emotional and physical well-being while managing fatigue and other MS-related symptoms:
- Do your biggest tasks in the morning, when you have less fatigue.
- Take brief rest periods after periods of extended effort.
- Take short naps in the afternoon, if possible, to recharge.
- Avoid the heat, which can worsen MS symptoms such as fatigue.
- Join a support community or local MS support group.
Parenting is tough, and parenting while dealing with MS-related fatigue is even tougher. But by tracking and saving your energy, sharing your challenges openly with your children, and asking for help when you need it, you can manage your fatigue and be the parent you need and want to be.
