9 Tips for Managing the Unpredictability of MS
Smart Strategies for Multiple Sclerosis Management
Multiple sclerosis is anything but predictable. "There's not an expert on this planet that can tell you when or if you will have exacerbations or whether your disease will be mild or become disabling," says Kathleen Costello, MS, an adult nurse practitioner, multiple sclerosis research associate at the Johns Hopkins MS Center in Baltimore, and associate vice president for clinical care advocacy, services, and research at the National Multiple Sclerosis Society. "Over time, you may learn more about your MS and understand what it means for you, but unpredictability remains a constant."
Fortunately, there are plenty of ways to make living with that unpredictability easier.
Become an MS Expert
One of the keys to living with multiple sclerosis is educating yourself, says Costello. Though everyone's MS is different, the more you know about multiple sclerosis and its symptoms, the better you'll be able to manage them.
Everyone in the family should learn about MS as well. That way they, too, can recognize when your multiple sclerosis symptoms are causing changes in your behavior. Helpful resources for gathering information include the National MS Society's website and the Multiple Sclerosis Center at EverydayHealth. In addition, tell your doctor you want to become an expert — ask lots of questions and get lots of answers.
Get Treatment (and Stick With It)
According to the National MS Society, it's important to start a disease-modifying treatment early to help prevent permanent damage. Your next step? Adhering to that treatment plan. If the treatment helps to reduce the frequency and severity of your multiple sclerosis symptoms, you can reduce the unpredictability of living with multiple sclerosis. And, because new therapies are on the horizon, it's important to stay abreast of multiple sclerosis management options and to talk to your doctor about what's available and right for you.
Plan Ahead for Healthy Eating
Although there's no special diet for multiple sclerosis, eating a well-balanced one can help you stay healthy and have more energy. But if the idea of preparing a home-cooked meal when you're fatigued is overwhelming, Costello suggests some advanced planning. For instance, keep low-fat, high-fiber and high-protein snacks, like low-fat cheese and whole-wheat crackers, readily available. Also, on days when you do have energy, prepare and freeze simple soups and stews that you can defrost and microwave on days you're fatigued.
Have a Backup Plan
One day you wake up raring to go, and the next day, you're exhausted and can't move when your alarm goes off. That's why you should have a backup plan for mornings when you just need more time to get going. Maybe your partner needs to get the kids ready for school those days, or an older child can help out. If there's a solution already in place, having a setback doesn't have to spell disaster.
Know Your Body
Does heat make your multiple sclerosis symptoms worse? "Then don't go on vacation to Mexico in July," Costello says. Are you better able to concentrate in the morning? Plan your schedule so that you do the tasks that require concentration earlier in the day and take a break in the afternoon if need be. Share what you know about your multiple sclerosis symptoms with your family so they, too, can plan to provide help and support when you need it most.
Build a Support Team
You might be tempted to handle multiple sclerosis management all on your own, but you shouldn't. Assemble a support team of health care professionals who can help you manage your multiple sclerosis symptoms — your neurologist and perhaps a physical therapist, occupational therapist, or psychiatrist — and also recruit family members, friends, colleagues, and others with MS who can be there on days that you find you need more help. Plus, there are lots of resources available to help with living with multiple sclerosis, both locally and on the Internet.
Start Sleeping Well
Getting a good night's sleep is important for anyone, but sleep can be a problem when you have multiple sclerosis. Pain, spasticity, and bladder issues can keep you up at night, and when you don't sleep well at night, you can be more fatigued during the day. Costello suggests talking to your doctor about strategies to help you reduce pain and spasticity as well as treatments to address your bladder issues. The better you sleep, the fewer bad days you may have.
Get a GPS
Because multiple sclerosis is a disease of the central nervous system, it can cause cognitive issues. This can present a particular problem when you're driving. Some people with multiple sclerosis get lost, Costello says — even in familiar places. She recommends getting a GPS for your car or a map app for your smartphone. That way, you'll be prepared and won't panic if this happens to you.
Plan for the Future
Part of multiple sclerosis management should include planning for the future. Costello says that many newly diagnosed patients ask if they immediately need to start thinking about long-term changes, like moving from a two-story house to a ranch-style home. That probably isn't a life change you need to make right away. But you will want to think about your financial future and what can happen as your disease progresses. Consider working with a financial professional to create a retirement plan — one that includes housing and can be adjusted as needed.
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