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Make MS part of your schedule

Multiple sclerosis (MS) is an unpredictable neurological disease. No two people will have exactly the same symptoms. When you have this chronic condition, the symptoms can range from mild to severe. You might have problems such as fatigue and weakness, blurred vision, mood swings, muscle spasms, or problems with balance and concentration.

Depending on the type of MS you have, your symptoms may get worse from time to time or you may experience new symptoms. The unpredictable nature of MS can be difficult, especially if you have to juggle a busy schedule at work, at school, or in your home life, such as parenthood and household chores.

Emily Reilly, 33, has first-hand experience. The Alexandria, Virginia native, who works as a healthcare provider engagement manager at the National MS Society, was diagnosed with relapsing-remitting multiple sclerosis when she was 17. At the time, she was an active high school student and athlete.

“I was a footballer with dreams of going to play college ball, and I had signed a football scholarship [a month] before my diagnosis,” she recalls.

She had noticed leg weakness and general fatigue. An MRI revealed lesions on the spine. But an MS specialist put her on the right treatment plan and encouraged her to pursue her footballing dreams and find ways to adapt to life with MS.

“He was like, ‘Don’t let me stop you.’ And so, I kept playing college football. I played all 4 years. I was actually an American goaltender, which was really cool,” Reilly says.

But it wasn’t easy. People with relapsing-remitting MS tend to have periods of onset or worsening of symptoms followed by periods of partial or complete recovery. This is called remission. Symptoms can occur at any time and upset your routine or schedule.

It took a lot of strategy and effort on Reilly’s part to adjust to life with MS: preparing for occasional flare-ups and dealing with constant fatigue. “During that time, I really learned how to manage my energy as a college athlete and a student, and then how to live with such an unpredictable chronic condition.”

Reilly also credits exercise with helping her stay fit, healthy and active. Indeed, her passion for exercise and its impact on her well-being led her to become a certified personal trainer. She teaches modified exercises to members of the MS community.

How MS can affect your work-life balance

MS is an autoimmune disease, which means that the body’s immune system attacks its own tissues. Its exact cause is unknown, but it occurs when the immune system becomes disrupted and destroys the fatty substance called myelin sheath that covers and protects nerves in the brain and spinal cord, which make up the central nervous system. This causes communication problems and confusion in the messages transmitted between the brain and the rest of your body.

Depending on the location of the attack, it can produce different neurological symptoms in each person. That’s what makes MS “highly individualized,” says Robert Bermel, MD, director of the Cleveland Clinic Mellen Center for Multiple Sclerosis.

MS symptoms can vary widely and range from mild to severe. Fatigue and mood problems seem to be the most common complaints. These “invisible symptoms” can be debilitating, complicate daily tasks, and affect productivity at work or at home.

Research shows that the socio-economic impact of MS is high. For people with this condition, reduced work hours, sick leave, poor job performance, and early retirement are common. The lack of energy extends as you try to run errands and balance the demands of your home life. Sometimes you might not have enough energy to go through your to-do list for the day.

“I think the fatigue symptom can be described as a kind of gas tank that’s low on fuel. It’s like once you use it, you kind of get wiped out,” Bermel says.

Common symptoms of MS include:

  • MS hug. It’s a feeling of tight pressure around your torso that can feel like a blood pressure cuff tightening around you.
  • Fatigue
  • Pain
  • Itching
  • A hard time walking and balancing
  • Numbness or tingling
  • Weakness
  • Muscle spasms
  • Blurry vision
  • Dizziness or feeling lightheaded
  • Bladder and bowel problems
  • Mood swings
  • The Depression
  • Changes in mental abilities
  • Sexual problems

Less common symptoms include:

  • Speech problems
  • Loss of taste
  • Tremors
  • Seizures
  • A difficult breath
  • Swallowing problems
  • Hearing loss

When to call your doctor about your MS flare-up

While MS symptoms can certainly disrupt your mood and your day, symptoms can vary in intensity and not all are cause for concern. This is especially true if you have just been diagnosed with MS.

“The most important thing to understand from the outset is to help MS patients differentiate between symptoms of new MS relapse and fluctuations in existing symptoms, which can certainly come and go and have good and bad days. And those sometimes turn into ‘pseudo-relapses’, but I like to call them symptom fluctuations,” says Bermel.

If this is a symptom you’ve never had before, it’s normal for you to feel anxious about it. But Brian Barry, MD, neurologist and director of the MS Clinic at MedStar Washington Hospital Center in Washington, DC, says it’s best to wait about 24 hours to see if symptoms improve or worsen.

“Anyone can get numbness from sleeping on the wrong arm or something that goes away after a few minutes or so. But if you have a new symptom, something you’ve never had before, or something that’s worse than you’ I’ve ever had before, and especially if it’s been longer than a day, that’s definitely something I would encourage people to talk about with their neurology provider,” Barry says.

Certain things can also trigger a flare-up and make you feel worse. This can include things like stress, fever, urinary tract infections, overheating, or viral infections. Your symptoms may lessen when the trigger goes away.

Experts say it’s better to wait and feel it. This way you don’t have to drop everything on your schedule all the time. This can save you from having to go to your doctor every time you notice a flare-up.

Tips for managing your schedule with MS

The unpredictability of MS can be frustrating and complicate your daily life. But there are things you can do to manage your long-term physical and emotional health. They understand:

Conserve your energy. When you start your day, you may have limited energy. Use it earlier in the day and for tasks that are high on your priority list. And Reilly says there’s nothing wrong with slacking off if you can’t do everything on your to-do list.

“I think it’s important to give yourself permission to slow down, to say no. I think it’s super important to give yourself grace. Like maybe today I can’t do the laundry, cook dinner and prep meals or whatever,” she said.

Rest when you need it. “We can manage it simply by setting aside 15 minutes every 2 hours for physical and mental rest. This can be very helpful in avoiding things like overheating and dehydration,” says Barry.

It can help you feel recharged for your next task.

Exercise. Reilly notes that exercise not only improves his physical health, but also his thinking skills. She also insists on neuromotor exercises. This type of exercise can help with hand-eye coordination, agility, and balance, which helps people with MS.

Doing this can be as simple as throwing and catching tennis balls, Reilly says. “Everyone can do it.”

Eat healthy. Eating balanced, healthy meals regularly can give you the nutrition and energy you need to get through the day. But it is better to avoid hot or spicy meals which can trigger a rise in body temperature.

If you’re not sure where to start, talk to a dietitian to help you find a meal plan that’s right for you.

Communicate your limits at work. Because MS can affect your productivity at work, it’s important to clearly communicate any limitations you may have to your manager or co-workers. This can help manage expectations.

Barry says this can include “strategies that work to get hosting to have more frequent breaks.”

It may also include options such as speaking to your human resources department about working remotely to meet your needs.

Do not hesitate to ask for help. Household chores or other day-to-day tasks can feel overwhelming when you barely have energy. Ask family and friends for help when you really need it.

“If you have children, maybe ask them to help you around the house to help you with some chores or to really communicate with your spouse. It’s very important to let people know where they can help and step in,” says Reilly.

Find the treatment plan for you. Although there is no cure for MS, disease-modifying drugs and other treatment plans can help you manage the disease. Ask your doctor what is right for you.

“[If MS is] affecting a person’s quality of life, we have medications that we routinely use to relieve their pain, if it’s difficulty walking then we would recommend trying physiotherapy,” says Barry.

Occupational therapy is another option. Occupational therapists work with any limitations you may have in terms of work or personal life and can help you find ways to adapt to life with MS over the long term.

But it’s important to keep in mind that MS affects each person differently. What works for one person may not always work for you. It’s best to work with your healthcare team to find solutions to manage your schedule.

“You can’t write someone else’s MS rules; you really have to personalize the approach and the management of it. That’s one of the things that’s really difficult with MS – the unpredictability and heterogeneity of it. It’s a little bit different for everyone, and everyone has their own story with MS,” says Bermel.

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