ME Stories

Shortly after being diagnosed with CFS, two things happened:  One, my doctor recommended I reduce my working hours to half time and two, she recommended Graded Exercise Therapy (GET).

"Do exercise you love!" she encouraged.  "What do you love to do?"

"I love to swim" I replied.

"Do it" she urged.

Implicit in her tone was her belief that my problem was I wasn't doing things I loved enough, not that I wasn't able to do them. She advised me to swim for one minute, then rest for three, then repeat.

So, that Sunday morning I returned to the swim group I had quit eight months earlier when I got sick with a mononucleosis-like illness.  I set out to swim one length of the pool, intending to rest when I got to the other side.

I didn't make it to the other side.  Just past the half way mark, where the pool depth drops into the deep end, my arms rapidly lost their strength - I wasn't able to complete the next stroke.  I abruptly realized this was a really bad idea.  I managed to kick myself to the pool's edge, but I wasn't strong enough to pull myself out.  A couple guys noticed I was struggling and came over  and pulled me out.

I lay at the pool's edge just breathing for a good ten minutes.  A year earlier I had lapped this pool with the butterfly stroke, reveling in the power and feeling of flying that stroke invoked in me.  Now I lay limply, exhausted from a half-length slow crawl.

Despite this failed attempt at GET, and despite the intense pain that kicked in following it, I didn't give up on it.  I just decided I would find another, safer form of exercise.  My entire life I had operated under one mode.  That is, you don't stop doing something just because it takes effort or causes pain.  Effort is the route to accomplishment.  I had also believed for my entire life that doctors know best, and if your doctor advises you to do something, you do it.  So I believed, in order to get well, I needed to push myself through Graded Exercise Therapy.

I replaced swimming with walking and across the next few weeks, I continued: one minute of walking, three minutes of resting, and repeat until I could not do any more.  But I wasn't improving, I was worsening, precipitously.  Whereas before I did GET, I was able to make it through a half-day of work and get back home before the exhaustion kicked in, now the exhaustion was hitting earlier and earlier in the day.  I had to close my office door and rest on the floor in between patients.  I lightened my case load even more and conserved all my energy for work - no small talk with my colleagues, no trip to the cafeteria for lunch.

But despite these efforts to accommodate my dwindling energy, it wasn't enough.  I reached a point when I had to acknowledge - I wasn't able to work even half-time any more.

It is now more than seven years later.  I have never regained the level of health and energy I had before I did GET.  If I understood the risks associated with GET - if I understood that GET could cause me to become so ill I can not speak out loud or chew solid food or leave my bed, and that it could rob me of my career, financial security, potential, and independence, I may have thought twice about sticking with it.

And if I had been advised to rest fully, and then gradually increase my activity only to a degree where there is no ill effect from it, I am pretty certain I would not be as sick as I am today.



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