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4 Ways to Create an ‘MS-Free Zone’ in Your Home and Your Life
Even though MS is with you 24/7, there are ways to mentally escape it, even if briefly.
By Cathy Cassata
Medically Reviewed by Samuel Mackenzie, MD, PhD
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Multiple sclerosis (MS) can feel like it’s taking over your life, from your body to your home and even your finances. However, there are ways to reclaim aspects of yourself and your environment in which MS plays no part. Here are a few ideas to get you started.
1. Assign an MS-Free Space in Your Home
Of course your home should be a safe place equipped with everything you need to manage your multiple sclerosis. However, setting aside a room that is free of MS-related drugs, supplies, and other paraphernalia can give you a place that's not defined by your illness.
Shelley Peterman Schwarz, who has been living with primary-progressive MS since 1979, says her home office is this place.
"It's a space where the things around me remind me of the good things in my life. I have pictures of my family. I can write in a journal, play on the computer, and I can be independent without bothering others in my family, which is really important when you are basically a quadriplegic," Schwarz says. Schwarz is the author of several books of tips for making life easier when you have MS.
Having an MS-free area in the home can also benefit other family members.
"Not only does this give the person with MS a place where they don't have to explain their equipment and MS to others, but it can give the family a shared space where everything doesn't revolve around MS," says Deborah Miller, PhD, a social worker and a professor of medicine at Cleveland Clinic in Ohio.
"This doesn't mean you shouldn't take a mobility aid into the space. It just shouldn't be stored there," Dr. Miller says.
If you have limited space in your home, Miller suggests keeping your MS-related stuff in one area and using a screen to separate it from other shared living areas.
2. Set Aside 'Fun' Money
No doubt, having MS is costly, and finding the means to spend money on entertainment or “luxuries” can be difficult.
"The guilt associated with not being able to contribute to household income is a huge loss for both men and women with MS," says Miller. "It's understandable they would feel guilty, but the person living with MS didn't ask for the disease. Just putting aside a little bit can give you and your family something to look forward to."
Michael Wentink agrees. At 31 years old, he was working as a director of a Fortune 500 company when he was diagnosed with relapsing-remitting MS in 2008. Although he’s grateful that he receives long-term disability from his former employer, he says he doesn't feel good about spending money on himself.
"It’s harder than spending it on my wife and children. I'm not contributing like I used to, and I have a chronic disease that costs my family money, so that's where my money goes," says Wentink, who blogs about living with MS at A Life Less Traveled as well as on other platforms.
Still, with the encouragement of his wife, Wentink says he does splurge on himself occasionally. "TV is a luxury to me. I love Netflix. And I'm a big Washington Redskins fan. When we moved from DC to Texas in 2003, I wanted to get the DirecTV plan so I could watch football," Wentink says.
While the purchase was originally just for him, his son now enjoys watching the games, too.
Saving for traveling is another way Wentink finds joy. "My wife and I love to travel. We used to travel a lot before we got married and before I got sick. So we've always been big on saving for travel. It's not easy for me to travel, but being able to get away is always nice for us and our kids," he says.
While saving can seem impossible, Miller notes, getting help for financial health is just as important as visiting a neurologist and a general practitioner.
"Getting financial planning help means you're taking control of the situation rather than feeling guilty. It involves goal setting and having things to look forward to. Sure, this won't take away the fact that you can't work like you used to, but it can give you a greater sense of control about what is coming in," Miller says.
The National Multiple Sclerosis Society can help connect people with MS to financial service professionals who provide free help to those with chronic disease. Some faith-based and community-based organizations also offer financial planning at low cost.
3. Prioritize Self-Care
Having a sense of self that's wellness-oriented, but unrelated to your medical care, can be empowering.
Wentink describes how he found a way to take his mind off MS and its care: "There's a lot of treatment with this disease. I used to get IVIG [intravenous immunoglobulin], which involves needles. During treatment, I started to almost zone out, or take myself away from the place of treatment. Then I began doing this at home, too. I would stare at a tree or something else outside. It became a form of meditating that I do to take a moment and kind of lose myself."
Shelley Peterman Schwarz seeks out low-cost self-care opportunities, such as manicures at local beauty schools. "They are less expensive at schools, and it's fun being in an uplifting and upbeat environment with other women," she says.
She also receives monthly massages, and she joined a health club to swim. "To me swimming is like being in heaven. I have freedom in the water that I don't have on land," she says.
If a health club isn't an option, Schwarz says to look into local programs that offer free swimming. "I'm near the University of Wisconsin in Madison. They have a program in which students help people with disabilities in the water. They picked me up, took me to the pool, and helped me in and out of the water," she says.
4. Take Part in a Hobby
Not only can hobbies fill your time and bring you joy, they can also give you a sense of centeredness, says Miller.
"Mindfulness is talked about a lot today — how being in the moment and enjoying what you are doing is a very important place to be able to go," she says.
Hobbies can also allow you the opportunity to contribute to your family or community.
"There are lots of ways we define ourselves, but most of it is by what we do, how we spend our time, and how we contribute to our family. A hobby can either be something that's important to you as an individual or to your family," notes Miller.
Such is the case for Wentink, who began baking after his MS diagnosis. "I take joy in following the order of a recipe — putting in the right amount of ingredients and making sure things are in the exact order so that the food turns out perfect," he says. "I like challenging myself, too. I've even made Twinkies. When I'm focused on all that, I'm not focused on the fact that I have MS."
Because baking can be exhausting, Wentink plans ahead for shopping, and he places appliances and ingredients in spots that allow him to work from a stool.
"Of course I'm tired the next day, but doing some extra prep helps me not push too hard," he says.
Plus, the payoff makes it all worth it. "My friends and family, especially my kids, love when I bake. My kids aren't telling people I have MS. Instead they tell them I’m the baker in the house; the one who bakes them cakes on their birthday," says Wentink.
Another hobby that brings benefits to him and his family is putting together puzzles. "This disease impacts your mind, and after I medically retired from work, I worried that I wasn't challenging myself and mind," Wentink says.
He took to . "It's definitely an escape," says Wentink. "We've even framed some for our house.
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