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

Sneek a Peek into my Pooped-out Sketchy Life

I’ve hit a wall – the fibro has flared it’s ornery self and striped me of energy.  My creative output is a bit puny.

The PROBLEM? –  No one can tell and I ain’t getting no sympathy.  I try not to be a whiner because I am sure others are as tired of my being tired as I am. This is the one place I can moan and grown cuz I know most of you won’t read it and are only interested in pictures of nude people . . .

charcoal sketch, 15 minutes

 

My Sketchy Life – hatch, hatched, hatching

Ai yi yiii – ever look up a word in the on-line “Urban Dictionary”?

I looked up “hatch” and was “blown away” by the uses . . . many of which I can not put in print on a G-rated blog . . . most of which I had never heard of nor heard spoken.

Why look up “hatch”, you wonder (or not)?  In art class the focus was on hatching – an art technique where lines are drawn in various forms & intensities to create shapes & shadow.

These two quick sketches were done prior to Easter.   Eureka! I thought: Hatching and eggs were perfect for an Easter blog post.

Then I got “hatched” – another fibromyalgia flare-up and I missed a week’s worth of art classes.

I’m still not feeling good and not pleased health issues keep hatching . . . but this chick got off her fibro-inflated rear and went to class this week.  

HatchVerb – To lose it; to get wound up over something; to be upset.

I’ve been hatching . . .

P.S.  Thanks Peggy A. for doing all the scheduled posting on CATNIPblog!  

O’ Woe is Me and my Rule of Halves (parenthetically speaking)

My dear Curious to the Max followers,

I imagine there are millions of you (I have a big imagination) who wait with bated breath and quickening heart beats for my posts – I shall call you Group Numero UNO.  You are keenly aware (due to your breath and heart rhythm) I’ve been bloggingly absent.  The rest of you (group 2, small “g”) are scratching your heads (or other parts) and wondering what I’m talking about because your lives, breath and hearts have gone on nicely without my posting.

For Numero UNO:  I just have lost my mojo, my energy, my focus – not interested in writing, reading, gardening, e-mailing, blog posts started and abandoned . . .  I’m giving credit to a fibromyalgia flare-up because fibromyalgia should be good for something.

For the second group: I am LOST, DEPLETED, SUFFERING and you probably don’t care . . .

On a serious note (not that I wasn’t serious before) fibromyalgia along with many other chronic conditions has a mind of it’s own and takes over at unexpected and unpropitious times.  After over 20 years of living with this condition I’ve still not got the hang of it.  When I feel decent I go, do, get overly involved and then crash for days, sometimes weeks (or months, but who’s counting).

The BACK half

The BACK half

To better manage what energy I have I’ve decided to do half of the ten things I currently need or want to do:

  1. Complete half the alphabet for the on-line daily blogging alphabet posting challenge. (I’ve half a mind not to even do the challenge this year and repost what I wrote LAST year).
  2. Brush half my teeth each day (I’ll alternate halves – half in the morning and half before bed)
  3. Clean and dust the half of the house I can’t reach.
  4. Stop watching the Super Bowl at half-time.
  5. Eat half the pan of brownies I’m making (half today and half tomorrow).

That’s half of my plans so I’m not going to write the other five.  

My New Motto (you can borrow it):

Live half my life with gusto, let the other half rest.

"This woman is half-baked as ever . . . "

“This woman is half-baked”

 

 

 

Frankly Freddie – I found a cure for my human!!!

My Dear Human Beings and other critters,

My human has been too tired to go on walks.  All she wants to do is sit around and I’m getting bored keeping her distracted by petting me.  She blames Fibromyalgia/chronic fatigue but I’ve long suspected that she just needs a new career that is exciting.  I found the perfect cure – FOR EVERYTHING THAT AILS HER .

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The CURE

There’s a woman in England who  (instead of moping around like my human being)  got a pair of feathered fans to do a routine in a bar that was holding a cabaret night.

She said: “It was nerve-wracking but exciting . . .  I felt alive. . . . Even though she’s not completely cured, her chronic fatigue only flares up every two or three months – lasting at most for a couple of days. “

She’s got big plans for the future . . . She said: “I have signed up with the alternative model agency Ugly, in London and hope to start appearing in magazines and adverts.”  (I didn’t tell my human being about “Ugly” because I’m not sure what kind of magazines and adverts want “ugly” . . . )

Freddie Parker Westerfield, CDT RET

Freddie Parker Westerfield, CDT RET

My human thinks all this is just a ploy to get her to take me on walks.  I told her if she didn’t believe me to read this:  

Woman Bedridden With Depression And Fatigue Turns Her Life Around With Burlesque Dancing

 

 

The Ultimate DYI – I’ll make me a new pea brain

As my fibromyalgia/chronic fatigue symptoms go unabated I have asked my doctor Patricia Ahearn repeatedly to get her lobotomy certificate.  I’m sure there is week-end or on-line training for doctors.  She’s a very caring person so it’s been hard to understand why she’s been stalling.

Maybe she’s been waiting for this new research?!!!!!!

hmmm . . . speed up the evolutionary process . . . we could still rule the world . . 

Researchers Grow Nearly Complete Human Brain in Ohio Lab

“An almost complete version of a tiny human brain has been grown in a U.S. lab in a move that could bring major strides to the treatment of neurological diseases, a scientist says.
Rene Anand, a professor at Ohio State University, has grown in a dish a brain equal in maturity to that of a five-week-old fetus, his university reported.”

“It not only looks like the developing brain, its diverse cell types express nearly all genes like a brain,” Anand said.”

“Around the size of a pea, the brain in a lab dish includes multiple cell types, all major regions of the brain and a spinal cord, but lacks a vascular system, the university said.” 

“It was grown from human skin cells and is claimed to be the most complete brain of its type grown yet.”

AND!!!!!

With the new 3D printing technology I might be able to make me new brain, each morning, right at home.