03.00
''Fall Down Seven Times Get Up Eight:
Living Well With Multiple Sclerosis''
by: John K. Wolf M.D.
1991
by: Daina Beckman
ch3
p57
Unmanaged exhaustion is probably the most crippling symptom of MS. Exhaustion takes the fun out of life and destroys relationships with family and friends. A paraplegic with strength and energy can live a full life but an exhausted MSer with mild weakness may be disabled.
In the past, patients left everthing in the doctor's hands. Medication was prescribed to be taken. People did what the doctor ordered. This is still adequate if you have an acute illness that will get well with medical or surgical treatment, but it won't work with Multiple Sclerosis.
MSers need to become active partners, to ensure a happier and more successful life. No Neurologist can cure your MS. Together you, your doctor, your physical therapist and your MSer friends can learn to manage the symptoms.
If you expect the doctor to take responsibility for your MS management, you will have no end of frustration. Fatigue management is a major part of the whole picture.
Attitude
p58
Stress intensifies MS symptoms as it worsens every other difficullt part of life. Early in your MS, you felt anger, denial, self-pity. You may have felt cheated. You probably behaved just as you would have during any other grieving period. But there comes a time to pull yourself together and move on.
It's not as though you had lost a perfect situation when you got MS. Your body was never perfect in the first place! What about the dreams and goals you had before MS, have you abandoned them? MS can be a tragic disease, but your ideas and actions can make it better or worse.
We have two choices. MS can control our lives, rule every conversation, prevent us from making plans for fear of future bad days or fatigue, prevent us from leaving home for fear we might wet our pants. I can't, I can't!
Or we can decide to control the MS. Be strong. You can do it if you learn how, and if you keep reading, stay in touch with other MSers to exchange stories and helpful hints, hang onto original dreams and goals and make your MS fit around them.
Talk about topics of general interest, not MS. Stop complaining. Start living.
Fatigue
p59
When we say, ''I'm tired'' to a physically healthy friend or spouse, they think they know what we mean. They don't. For healthy people, *fatigue* is weariness from labor or exertion.
Fatigue is often a pleasant feeling at the end of a hard day's accomplishments that feels even better with a long stretch of arms, legs and trunk muscles. Fatigue disappears with rest. It is a normal part of life.
MS fatigue cannot be translated to meaningful English words so that physically healthy people understand what we feel. When MSers search for synonyms, we come up with ''exhausted, literally ready to drop, spent, more dead than alive, haggard.''
MS exhaustion occurs in the morning when we awaken from a good night's sleep. It hangs around for days or months. It attacks suddenly in the middle of a busy day or week. It is never a normal part of daily life. And MS exhaustion never feels good.
But MS exhaustion is also predictable and manageable. Here is a plan that works for me.
Know Your Body
Know your body! If you skip this step, you cannot manage exhaustion successfully. Know your body. If you ignore it, you will remain frustrated. Learn precisely where you are strong and which muscles and movements are weak. Learn precisely how strong each muscle group is, and how much stamina it has.
Keep a record of your observations. Behave like a professional manager training a prize fighter.
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Acceptance of each new situation