How to Live with the Unpredictability of MS - dummies

How to Live with the Unpredictability of MS

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

The hard truth about multiple sclerosis (MS) is that it may be difficult to predict from morning to night (let alone from one week, month, or year to the next) how you’re likely to feel.

Once the initial shock wears off, people generally cope pretty well with the changes that MS brings — after a period of upset, they figure out how to adapt and change the way they do things. The bigger challenge, however, lies in not knowing when you may have to adapt all over again.

No one can tell you with any certainty just how your MS is likely to behave over the long term. Statistically speaking, the following factors seem to predict a better outcome:

  • Fewer relapses (also called attacks or exacerbations) in the initial years following the diagnosis

  • Longer intervals between relapses

  • More complete recovery from relapses

  • Relapses that are primarily sensory in nature (for example, numbness, tingling, visual changes)

  • Fewer findings on the neurologic exam after five years

Unfortunately, however, no matter what predictions you receive, you have no guarantees. And some people have a rough start but end up doing very well. So, your optimal strategy will always be to hope for the best while being prepared for whatever else may come along.

Controlling the uncontrollable sounds a bit like trying to organize the raindrops, but the fact is that you can do a lot to live more comfortably with an unpredictable disease. For example, take these steps:

  • Educate yourself: The more you know about MS, the better prepared you’ll be to deal with whatever comes your way. Even though keeping your head in the sand may feel like a comfortable strategy, it leaves you uninformed and off-guard. By becoming familiar with the kinds of symptoms and changes that MS can cause, you’ll be more equipped to recognize and deal with them if they happen to occur.

  • Create your support network: The starting point for dealing with an unpredictable disease like MS is to recognize that you don’t have to do it alone. From the get-go, your best strategy is to identify your resources (for example, voluntary health organizations, such as the National MS Society, the Multiple Sclerosis Association of American, and the Multiple Sclerosis Foundation, Internet sites, and community resources).

    Recruit your team (family members, friends, colleagues, other people with MS, health professionals, and anyone else whose input you value). Over time, this network will be crucial to your coping efforts.

  • Start treatment early: Even though doctors still don’t have a cure for MS, several medications have been shown to slow disease progression and reduce the number and severity of attacks. Early treatment can help prevent some of the irreversible damage that’s known to occur even in the earliest stages of the disease.

  • Get to know your body: Because no one else’s MS is quite like yours, your own body’s behavior will be your very best source of information and guidance.

    For example, pay attention to important cues: Does heat make your symptoms feel worse? Or are you more sensitive to cold? When is your energy at its peak? How do you react to stress? Are you better able to concentrate and remember things earlier in the day or later? Do you have side effects from any of the medications you’re taking?

    And while you’re busy trying to figure out all this important information for yourself, remember to share it with the key people in your life. No one can read your mind, and being clued in to how your MS behaves makes it easier for people to provide help and support when you need it.

  • Plan activities for the “best” part of your day: You may start the morning feeling ready to take on the world and end the day ready to take a long vacation. After you have a pretty good idea of how your body reacts over the course of a day, try to plan accordingly.

    If you have more energy in the morning, plan to get the big stuff done early. If a nap in the afternoon gives you an energy boost, figure out how best to make use of that bonus. If thinking and concentrating become more difficult as the day wears on, be sure to tackle the mind-bending tasks first thing.

  • Always have a back-up plan: One day you’re loaded for bear and the next you just feel loaded down. The best way to deal with the demon of unpredictability is to be prepared for it: Every big plan should have a just-in-case feature. Even though this extra planning may feel like a downer, it gradually becomes second nature.

    For example, people get into the habit of thinking about alternatives just in case their fatigue kicks in, their symptoms flare, or a relapse happens. This strategy is particularly important for parents.

  • Put all that emotional energy to the best possible use: No, it isn’t fair that you have MS. Yes, you resent that you can’t do all the things you want to do the way you used to do them. And, yes, you’re angry about having to deal with challenges and uncertainties that others don’t have to face.

    But, remember, anger that isn’t put to good use is just a wasteful drain of precious energy. You’ll feel better and function better if you direct all that energy toward your goals, taking on the challenge of MS by meeting it one day at a time.

    Use your anger to do something good for yourself: Rearrange your kitchen to make it more accessible. Sign up to become an MS activist to work for the rights of people with disabilities. Join a self-help group in your community or start one of your own. Talk to your boss about some accommodations that would allow you to be more comfortable and productive on the job. In other words, doing is better than stewing.