“Pressurecising”

How often have you heard something similar to this? “It is important to exercise.  It doesn’t matter what you do because any exercising helps.”  Who could argue?

hand weight

At every visit, Physicians try to compel me to exercise by asking if I am doing any exercising.  I also have the self-imposed pressure of societal expectations about exercising:  Heck, I live in Colorado!  Coloradans are big on outdoor activities and a focus on healthy lifestyles. However, the pressure to exercise (pressurecising) has little effect on me, other than I feel guilty about not exercising.  I am just not motivated.

People who are not self-motivated to exercise when they are healthy, will probably find it incredibly difficult when poor health gets in the way.

In my “healthy” years, before the diagnosis of multiple sclerosis (MS), the only way I consistently exercised was to arrange with someone to go bicycle riding or meet to play racquetball.  That worked.  I actually showed-up because I had made a commitment to the other person who relied on me to be there and I enjoyed it.  The few times I exercised by myself never lasted very long.  I simply do not enjoy it.

Now that I have MS, I discovered a new stumbling block: exercising with strangers.  Well-meaning trainers and strangers exercising with me tried to urge me on.  Telling them I have MS was as effective as describing a color to a person blind from birth.  Understandably, they did not comprehend and for heaven’s sake, if I tried to elaborate, it would have been an exercise-in-futility.

I do not want to draw attention to myself but desperately want others to understand MS just a little bit.

Unfortunately, most people are misinformed.  They might try to relate to me by telling about “an Aunt who died from MS.”  Far too many people mistakenly believe MS is a death sentence instead of an impairment that ranges from minor to severe physical and/or cognitive difficulties.

When well-meaning people try being cheerleaders, they don’t understand my lack of movement is not because I need encouragement or help but my muscles won’t respond and I am also trying to keep from becoming fatigued.  I might still try but if I am not careful, I risk injury.

After years of searching for the most appropriate exercise, I eventually assumed the slow and deliberate movements of Tai Chi would be perfect.  Wrong.

On two occasions, I attended a Tai Chi for Arthritis class at our community recreation center but certainly, no one else had multiple sclerosis.  Even with Tai Chi’s slow deliberate movements, my cognitive issues still caused problems in comprehending and copying the positions of the torso, arms, hands, legs, and feet, then transitioning to the next position.  Although the transitions were made slowly, the instructor was going on to the next movement before I figured out the positions for the first movement.  I could not keep up and quickly became physically and mentally fatigued and stressed.

Mistake #1: I did not speak with the instructor BEFORE joining the class.
As with many people who have MS, I appear generally healthy, so he had no idea I had MS and struggle with the movements because of my impaired cognition and physical abilities.

Mistake #2:  Telling a well-meaning classmate, who was urging me on, I had MS.  Many people simply cannot relate to what MS is and does to a person.  She kept encouraging me to do things because she did not comprehend why I was not trying a movement.  Unwittingly, she only increased my frustration, stress, and embarrassment.

Focusing on the instructor’s movements allowed me to learn without making the movement.  Neither the instructor nor classmates understood that sometimes I had to just watch to learn and keep from being fatigued or falling.

Even with Tai Chi’s slow movements, my MS issues with cognition, coordination, dexterity, balance and falling were significant.  The result: I abandoned exercising.  Unwise for anyone, regardless of their health.  However, wisdom is not the province of will power.

Jekyll and Hyde

Can an MS exacerbation have no obvious physical component with its only apparent impact being on cognitioJeckyll & Hyden and behavior? Anecdotally the answer seems to be “yes.”

The signature impact of multiple sclerosis is its unpredictability and broad range of potential symptoms. Per the National Institutes of Health (NIH): “A small number of those with MS will have a mild course with little to no disability, while another smaller group will have a steadily worsening disease that leads to increased disability over time. Most people with MS, however, will have short periods of symptoms followed by long stretches of relative relief, with partial or full recovery. There is no way to predict, [especially] at the beginning, how an individual person’s disease will progress.”

A recent exacerbation seemed to only affect my cognition and behavior rather than cause any outward physical symptoms. My behavior was disturbing and definitely not how I had ever handled difficult and stressful situations. It was probably triggered by significant interaction with our insurance company, bank, and contractors to repair substantial hail damage.

For a time, my personality dramatically changed from my consistent and life-long diplomatic nurturing personality into an angry confrontational person. The change was similar to turning on a fluorescent light: the light slowly becomes brighter and brighter. In the case of this exacerbation, this behavioral response became more and more frequent until it was the only way I responded! I did not recognize the change until I was well into being a disagreeable ogre. I would often realize I was exhibiting uninhibited and inadvisable behavior but could not help it. If I had been asked if I’d like a cup of coffee, my normal self would have responded “Yes, thank you” or “No, thank you.” However, during the apparent exacerbation, I would probably respond with obvious irritation “What makes you think I want a cup of coffee?!” Also see Who the Heck is this Guy?!

After a few months of this uncontrolled antagonism, suspicion and resentment, I woke up one day to the realization that I was not upset. In fact, “everything was rosy.” I was again unconsciously and naturally behaving in a civilized and congenial way. The way I had always been prior to the “exacerbation.”  My return to my previous and more agreeable behavior was similar to turning the light off: no delay. The light turned off instantaneously and my personality was back to normal.  My RRMS had gone into a stage of remission.