MS Maze

“A positive attitude will keep you healthy.”

I’ve been told this a thousand times from well-meaning friends and acquaintances. I admit that It’s true to a certain degree and I personally have one of the great positive attitudes of all time. I’ve accepted my illness and the limitations it has placed up me and my family. I don’t look for magic cures, I take my medications and see my doctor regularly. I have hung on to my part-time job despite difficulties and often push myself beyond my comfort zone in order to make sure I’m not taking the easy way out. I allow myself only a few minutes for a pity party once in a while.

In spite of that, I hear it implied that my attitude is responsible for relapses and setbacks. I resent that some people try to make me feel as though this is completely in my control and I just have to manage it better. Yes, my positive attitude helps a great deal. No, it doesn’t prevent relapse.

I have tried to “positive attitude” myself into walking when my legs disagree and met with failure. I’ve tried to “positive attitude” my fatigue away only to fall asleep sitting straight up. Fortunately, I have the good sense not to “positive attitude” myself into operating an automobile when my body is unwilling.

Mind over matter is a good place to start, but understand that it’s not a cure all. I wouldn’t dream of blaming the attitude of a cancer patient or heart patient for his or her disease. I wouldn’t recommend a paraplegic get out of his wheelchair and “positive attitude” himself to walk. Because MS has many invisible symptoms and has a relapsing/remitting nature, it encourages observers to believe that it is emotionally based or can be easily overcome. In fact, it’s those darned brain and spine lesions which are to blame.

We know you mean well, but we don’t want to have to feel guilt and inadequacy in addition to our MS symptoms.

“So you’re tired — I tossed and turned all night and I’m tired, too.”

One of the most debilitating symptoms of MS can be fatigue.

More than just being sleepy, this is a bone-weary fatigue which can make it all but impossible to function. It does not correlate to how much or how little sleep was had the previous night. It is a powerful body and mind fatigue which is unaffected by a cup of java.  It can turn even minor tasks into major problems and can interfere with the ability to think clearly.

Personally, fatigue is the single worst symptom I experience and the one which has had the greatest impact on my life.  It robs me of my ability to function and exaggerates every other physical symptom.  Oh, I’ve experienced lack of sleep before and I’ve been pretty tired, but this type of fatigue is in a league of its own.

“You really shouldn’t use your cane (walker, or wheelchair) because you’ll become too dependent on it.”

People with MS rely on devices such as canes and walkers not only to lean on when putting one foot in front of the other, but also to help maintain balance and coordination, as well as a sense of security while walking.

A cane can greatly improve the exaggerated gait as well, allowing us to look and feel less handicapped. While able to walk short distances, many of us with MS have difficulty standing for more than a few minutes and use of a wheelchair can make or break the day.

During those times when symptoms abate, few would choose to use a cane or a wheelchair. More likely, you’ll see us out there kicking up our heals.

Mobility devices are another way in which we can work the maze and maintain independence.

“MS? Oh, that’s not a big deal. My cousin has MS. She doesn’t even take medications and goes skiing, running and hiking.”

While a great many people with MS do go about their daily lives with little or no problem, remember that MS varies greatly from person to person, from benign cases to complete disability.

Naturally, we are thrilled for those who don’t suffer disability and, in fact, find hope in those cases. But dismissing someone’s MS by saying that it’s not a big deal can be hurtful. More likely than not, there is a private struggle and very personal symptoms of which you are unaware. No need to offer pity or sympathy either. Just a little understanding.

“Oh, I had knee surgery a few years ago so I know exactly how you feel. I didn’t give in to the pain, though, and refused to use a cane.”

While many people experience pain with MS, many others do not. They simply cannot “play though”, as someone with pain from an injury may be able to.

In fact, there’s probably nothing wrong with their legs! Remember, the fault lies in the transfer of signals from the brain and corresponding parts of the body. Think of it this way — the body is a dysfunctional family and some members are simply not speaking to each other much. The brain is capable of telling the leg to move. The leg is perfectly capable of moving. They’re just not communicating properly. The person with MS cannot will their body to cooperate.

Telling someone with MS how you overcame an injury or disease is a great way to share common ground, as long as you don’t compare your recovery with theirs. MS has no cure. It’s in for the long haul.