PEM’s and PEM – How I try to cope

Peggy loves to use multiple exclamation marks when she writes. Probably to her chagrin, I edit them out. I refer to it as PEM’s or “Peggy Exclamation Marks”.

One of the reasons I retired was after seeing clients I was exhausted for days.  Because I felt fine when I was in session I largely ignored crashing afterwards.  Besides I was used to feeling exhausted socializing, exercising or even taking a shower.  

Having been diagnosed with fibromyalgia/chronic fatigue in 1996 I am relatively well versed in research, symptoms and treatment.  However, I just recently came across the term PEM!  I did a double take.

Turns out that, in relation to chronic fatigue and fibro, PEM stands for Post-Exertional Malaise and has nothing to do with Peggy’s excitement.  I was gobsmacked to find a name for what I thought was just a weird reaction, I alone had, to anything stressful, whether positive or negative.

This is how “gobsmacked” looks

How do I explain that I dread taking a shower because it fatigues me.  How do I tell friends I don’t want to get together because “they” exhaust me?  I constantly evaluate cost/benefit of whether any activity is worth hours or days of exhaustion afterwards.

It’s a relief to put a name to my experience:

“Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing). The goal is to avoid PEM flare-ups and illness relapses by balancing rest and activity.” CDC.gov

Some of my coping mechanisms.  

  • I avoid telephone conversation.  E-mail is one-way – my pace, my time and not as energy depleting as two-way conversations.
  • I watch lots of Hallmark TV moviesthere’s always a happy ending.  Any violence or tension sends my brain into over-drive.  
  • I eat constantly Food gives us energy.  So far all it’s given me is a roll of fat around my middle.
  • I live vicariously through friends and fellow bloggers who travel to far away places. I daydream of moving to live in another country.  My day dream always includes a villa in Southern France with servants. 
  • I try to find humor in life . . . “try” being the operant word.  
  • I never take a daily shower.  I figure the sweat will help the dirt roll off.
  • I take 3 hour naps immediately after I wake up in the morning.

Now I know why I edit out PEM’s (the Peggy kind).  Exclamation is exhausting . . .

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Don’t let her kid you, Judy is very successful at finding humor in life, to the delight of us all !!!!!!!!!!!!!!!!!!!!!!

Peggy

Still hysterical – I’m well practiced

1995: The end of life as I knew it:. I began experiencing excruciating burning pain in my hands, arms and legs. In 1996 fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: unexplainable, unverifiable and in all probability psychosomatic. Their unofficial diagnosis was “Hysterical Middle Aged Woman’s Syndrome”.

Doctor after doctor, told me, test after test after expensive test came back negative, that nothing was wrong with me and to go home and “Get a life”. Some looked at me knowingly, like we shared a secret “You’re a psychotherapist. You know about psychology” – Wink, Wink. The only reason I winked back was to blink away the tears that were threatening to disrupt the façade that I wasn’t a hysterical middle-aged woman.

I just wanted someone to put a name to what I had. Gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors, Yup you are reading right! They are ALL in the plural. I didn’t just see one of each. I saw private practitioners, researchers, and heads of hospital departments. I’m sure each of them wrote “HYPOCHONDRIAC” on their charts.

Over two-plus decades later I’m no longer middle-aged, just hysterical.  I still struggle and some mornings I wake up feeling like a locomotive hit me and the bottoms of my feet on fire even tho the only thing they touched for 7 hours was a sheet.  BUT now that the pharmaceutical companies have realized there’s over 10 million people, in the United States alone and millions more world-wide, with this condition the research is progressing.  

 Fibromyalgia and chronic fatigue/ME are finally recognized “officially” as an illness.  The research now points to the possibility these conditions are auto-immune, neuro-inflammatory disorders in the brain.  

Those doctors were right after all — it IS all in my head!

judy