Multiple sclerosis (MS) fatigue is more than just feeling tired. It’s an overwhelming exhaustion that can make simple tasks feel impossible. Here, three women with multiple sclerosis share how they’ve learned to work with their bodies and find new ways to live their lives to the fullest.
Demontica Chapman: Make Your Schedule Work for You
Demontica Chapman was walking down a set of stairs at work when she felt her leg get weak. Before she knew it, she was falling down.
When her leg didn’t feel back to normal months later, Chapman knew something wasn’t right.
“I started to go on a journey to figure out, like, ‘Why am I still hurting from just a tumble down the stairs?’” Chapman says.
Her ability to walk worsened. Her legs began to drag. Her leg muscles became so weak she couldn’t lift up a foot to step onto the curb. She felt burning and tingling in her feet nonstop.
Chapman sought out all kinds of medical specialists. She hoped someone could tell her what was going on in her body. After two years of searching without clear answers, Chapman finally saw a neurologist in 2015 who diagnosed her with relapsing-remitting MS. She has since transitioned to secondary progressive MS.
Chapman, a medical claims adjuster who lives in Lakeland, Florida, remembers often feeling tired even before she realized it may be related to her MS.
“It was more of a, ‘Oh, I’m just tired today. Oh, I don’t have the energy to do anything. It’s just been a day,’” Chapman says.
But her MS fatigue has gotten worse over the years. Before, Chapman might feel tired but could typically push through and live her life. Now, at 40 years of age, if fatigue hits, she’s forced to slow down — or even hit pause. The feeling is powerful.
“You don’t want to get up and do anything but stay in the bed. You have energy to do nothing. Like, it physically weighs you down,” Chapman says.
When fatigue hits, her brain feels foggy. She struggles to keep her eyelids open. The worst of it usually hits a couple of times a month, for a week at a time.
Fatigue has forced Chapman to change the way she lives her life. But, Chapman says, it’s not the end of the world. She’s found ways to adapt to her busy schedule and set priorities so she can focus on what’s most important.
Kathy Zackowski, associate vice president of research with the National Multiple Sclerosis Society, says listening to your body and recognizing your limits is essential when dealing with MS fatigue.
“I really think people have to take a little bit of ownership of how they feel and learn to use those signs that your body gives you so that you know if you can push yourself on some days or if you should back off,” Zackowski says.
For example, when Chapman feels MS fatigue hit while at work, she takes a break to lie down. If she’s too tired to drive her daughter to soccer practice, she may decide to keep her daughter home. It’s a tough decision, but she knows it’s better for everyone’s health and safety in the end.
“I know that by the time I get off from work, mentally, my brain is not going to give me the energy to get in the car and go sit at soccer practice and come back,” Chapman says. “If there’s activities that the kids want to do and I can’t do it, then we have to reschedule.”
For responsibilities that can’t be shifted, Chapman makes it a point to prepare herself ahead of time. Church, medical appointments, her MS support group, and picking up kids from school are all must-dos.
To make sure she gets enough rest, Chapman will set aside time the evening before to prioritize rest. If she has an evening outing, Chapman might even take time off from work beforehand. No cooking, no major chores. Maybe she takes a shower so she doesn’t waste energy on it in the hours before an event.
Most importantly, Chapman spends her rest time in bed to fully relax. That way, she doesn’t feel too spent to enjoy the upcoming activity..
Planning ahead and allowing for plenty of time between tasks give Chapman enough time to rest and get ready. If she feels rushed, she’ll waste too much energy to manage later on.
Chapman makes it a point to prioritize both necessary tasks and those that bring her joy. She says it’s important to do things that bring meaning into her life. And community has been her rock through it all.
“You get so much support and love from others,” Chapman says. “It just makes it more bearable to go through it with those who just get it.”
Jessica Akselrad: Take Micro-Breaks
About a year ago, Jessica Akselrad was excited to embark on a new career path. She left a job as an art teacher to study interior design.
The 35-year-old who lives in Denver, Colorado, found her new studies demanding.
But she faced an even bigger challenge when unusual symptoms began to pop up — numbness in both legs that got worse over time, distorted vision, and double vision.
Then, Akselrad remembers crossing the street one day. In the moment, she felt like her brain couldn’t control her leg movements, just as a car was coming toward her.
“It was kind of my ultimate, like, ‘Oh my god, I have to go to the doctor,’” Akselrad says.
After multiple tests and an MRI scan, a diagnosis: relapsing-remitting MS.
Less than a year since then, Akselrad is still processing the news. But she’s also finding ways to adapt to her new reality.
Akselrad noticed her MS fatigue soon after diagnosis. She felt heavy pressure around the eyes and a sense of extreme tiredness that often came on in the early afternoon.
“Something just hit me that felt like a weight and different than just tired,” Akselrad says, “telling me I have to stop.”
Up until recently, Akselrad had gone through MS fatigue multiple times each week. At first, she chose to cancel her plans on days she felt her energy go down the drain.
But soon enough, she found a better solution: the mini-break. With just a 10-minute nap or a brief walk outside, Akselrad discovered she could get some energy back and continue on with her day. If the fatigue became too much again, she’d know it was time for her next small rest break.
“That helped,” Akselrad said. “Realizing that my energy did, and could, come back. And I could keep going.”
Now, Akselrad focuses on listening to her body. It’s helped her maintain an exercise routine and work part-time on top of school demands.
During a group exercise class, she focuses on proper form over doing the most reps so she doesn’t get too tired.
When she takes a babysitting shift, she’s happy to kick a soccer ball around with the kids as long as her body feels up to it. When she knows it’s time to stop, she finds creative diversions, such as turning the pause into a fun stretch break or a moment to lie in the grass and watch the sky.
Akselrad is also trying a new medication that may help her fatigue: Wellbutrin. She’s only been on it for a couple weeks so far, but Akselrad says it’s just one new way to try and adapt to her life after the diagnosis.
MS, after all, can offer an opportunity to try new things and learn more about yourself. Rather than stopping your life, find new paths forward.
“Listen to your body,” Zackowski says. “I would encourage people to think through what they used to do before they were diagnosed.”
Zoe May: Work Out, However You Can
Zoe May felt the symptoms of MS long before she ever received a formal diagnosis — a couple of falls; blurry vision and vision loss; and a persistent tingling sensation.
But when she first consulted doctors after an initial relapse in the early 2000s, they couldn’t find enough evidence to diagnose her with MS.
Then, over a decade later, May took a fall at work. She thought it was the high heels she had been wearing. But when she fell yet again just a few months later, May suspected something was wrong.
“I was leaving work one day and, again, fell over, looked around and thought, ‘Hmm...There’s something not right here. You don’t fall over twice in a fairly short period of time,’” May says.
In 2019, she received an official diagnosis of relapsing-remitting MS.
May, who works for the East of England Ambulance Service from her home in Buckden, England, had always been an energetic person. For the past couple of decades, in fact, she’s worked in many areas of health care.
But after being diagnosed with MS, May had to adapt. She could no longer walk very fast, and her balance got worse. She constantly fears falling over. Her energy levels also weren’t the same as before.
Although May doesn’t go through overwhelming fatigue very often, she has noticed certain activities tire her out easily. For example, climbing stairs and speed walking are pretty much out of the question. Driving long distances also makes her tired. These days, she doesn’t drive more than two hours at a time.
May, who is 58 years old, loved working out and going to the gym before being diagnosed with MS. Even though she now faces more physical limitations and less energy, she doesn’t let that stop her. At home, May has a hot tub that helps her continue many of her favorite exercises — but now, in the water. She says the warm water helps relax her tense leg muscles and allows her to move around without worrying about a fall.
“For me, doing the hot tub exercises is better than doing something like yoga because it’s just not easy to pick yourself up off the floor,” May says. “It really helps relax the muscles and helps stretch them.”
These days, she tries to do her tub exercises every day. But she adjusts the workout depending on her energy levels. Some days she might do just a few minutes of water aerobics. Other days, she can stay in there for up to 40 minutes. With consistency, she’s been able to improve her daily reps and challenge herself to do a little bit more than she could before.
Although the warm water helps May ease her muscles, others with MS who feel worse fatigue with heat can do similar exercise routines in a swimming pool. Zackowski says adapting activities and focusing on a ‘can-do’ attitude make all the difference.
“A lot of it has to do with kind of your mindset,” Zackowski says. “It’s not really like, ‘I have to go do 20 sit-ups and walk 3 miles to say that I’ve exercised, it might just be that I make sure I increase the number of steps that I do every week.’”
May says it’s important to listen to your body. If she pushes herself too hard with pool exercises, she’ll feel it. Likewise, she tries to be gentle with herself when it comes to completing daily tasks.
For example, if she needs to clean the windows but realizes she may be too tired to clean them all in one day, she breaks the chore down. Today, she’ll clean the lower windows. Tomorrow, she’ll head upstairs and clean the rest.
“I just have to really be careful with how much I do,” May says.
May can’t walk as far or work out as much as she used to. But she doesn’t let that stop her. She’s still taking classes, writing books, and showing up for work each day with MS and all.
“It’s thinking, ‘Well, tomorrow is another day,’” May says. “It’s taking the opportunities and sometimes doing things differently.”
