Whoa is me (no complaints, just the facts – parenthetically speaking)

Unbeknownst to you, who read posts, on MAXyourMIND and CURIOUStotheMAX, you occupy an important place in my ever shrinking life. 

I’ll explain:

If you are a recent blog follower you may not know I struggle with a chronic condition – fibromyalgia/chronic fatigue.  I look fine (except for the weight I’ve gained self-medicating on food) and when out and about I am reasonably coherent and polite  Few people would know:

  • I avoid interacting with others and lead a relatively solitary life because normal stimuli is a stressor and triggers even more bone-deep exhaustion, whole body pain and brain fog.
  • My feet burn from walking
  • My gums hurt from chewing
  • I retired largely because I would be out-of-commission for days after seeing clients
  • I regularly have appointments with 4 different medical specialists plus 5 irregularly (the appointments are irregular, not the specialists)
  • When depressed I cry at dog food & laundry commercials.

I was diagnosed in 1986 when the “condition” was considered by doctors to be psycho-somatic – not real, just something I “thought” was wrong with me and psychiatric treatment was needed.   

judy by Judy

As I’ve gotten older (and of course, wiser) my system responds more and more negatively to all kinds of stimuli.  Just reading, watching, listening to strife, mayhem, pillage or plunder (whether fact or fiction) as even pleasurable activities, like being with friends, can trigger days of physical and mental exhaustion.  I could go on and on about all my “symptom-stuff” but it depresses me to write about it (a symptom not talked about because it requires psychiatric intervention, just like all the doctors believed). I’m not complaining (I save that for my husband and close friends – aren’t they the lucky ones, irony intended).

Why then am I yet again writing a post about fibromyalgia/chronic fatigue?  After reading Ron Davis’ story I decided it was a small thing I could do to help raise awareness for National Fibromyalgia ME/chronic fatigue day.   

Click here:

Ron Davis pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing his own son.

Ron Davis’ son Whitney is on the extreme end of the spectrum whereas I mirror just a teeny bit of his journey on the mild end of the spectrum.  

Whitney was functioning as a photographer for a good portion of his young adulthood until his ability to withstand any outside stimuli increased and his functioning declined.  He is now bed ridden, fed through a feeding tube and all sensory input – sight, sound, touch – triggers an overwhelming, debilitating cascade of symptoms.

These types of “conditions” are beginning to be researched (now that pharmaceuticals have realized there are millions of people afflicted world-wide and million of dollars to be made).  Fibromyalgia is one of the most common chronic pain conditions. The disorder affects an estimated 10 million people in the U.S. and 3-6% of the world population. 

I thank you for being a part of my life (a much bigger part than you ever knew), helping me keep my brain working, my sense of humor in tact (if not in bounds) and give me a reason to contribute in some small way.

I say a Baha’i prayer every day and thank God for what he hasn’t given me.  I’ve been blessed and unbeknownst to you, you are all a part of my blessing.

judy

Hysterical Middle Aged Woman’s Syndrome

Difference in reactions to Pacemaker & Fibromyalgia

If you want to know more about these invisible illnesses you can read.

http://www.fmaware.org/

https://medlineplus.gov/chronicfatiguesyndrome.html

Links to WorldWide ME/chronic fatigue Organizations”

 

Struggling to surrender to life

My biggest struggle is to not struggle.   The more I struggle to push through fibromyalgia fatigue, and stay engaged in life, the more fatigued I become.  After over 2 decades of living with a chronic condition struggling has become a self-defeating habit.

judy

Soul Pancake “. . . brought in people ages 0-100 to answer some of life’s big questions. In this episode, we asked people “what are you struggling with right now?” From homework to depression, one thing rings true: humans, at any age, are struggling with something.

What about you, what are you struggling with right now? Share your experience in the comments section if you feel up for it.”

 

Back in the art saddle again . . . bare-back

Haven’t drawn for months as I stopped going to art class when I fractured my ankle (couldn’t drive).  The fall semester of classes just started and I was curious to see if I’d lost all the progress I’d made.  

I was even more curious to see how my energy held up since the fractured triggered the worst of all my fibromyalgia symptoms.  My arms hurt during the 1 minute poses – probably because I was drawing furiously, holding tight to the charcoal, trying to stay in the saddle.  

During these 5 -10 minute poses I slowed myself down to a trot. 

Charcoal

Charcoal (The model isn’t as volumptuous as I drew her)

Charcoal (See? She’s quite svelte)

With this chronic condition I’m continually weighing the pain & pleasure ratio, trying to decide if the pleasure I get from activities is worth the ensuing pain.

Today, I’m sore and exhausted . . .

RATS! Hunger, Chronic pain & Me

Penn neuroscientists have found that animals’ brains can suppress feelings of chronic pain when they are hungry.

The study, which was published in the science journal Cell, found that temporarily shutting down chronic pain is part of animals’ survival behaviors when searching for food.

According to a press release, approximately 300 neurons are capable of shifting the brain’s focus to hunger, thus eclipsing the effect of chronic pain.

The researchers apparently didn’t set out expecting that hunger would influence pain sensation so significantly, but when they saw these behaviors unfold, it made sense to them. “If you’re an animal, it doesn’t matter if you have an injury, you need to be able to overcome that in order to go find the nutrients you need to survive.”

The Penn team also discovered that the neurotransmitter NPY is primarily responsible for selectively suppressing pain responses. This research could potentially be applied in humans to ameliorate chronic pain after injuries and serve as an alternative to opioid medications.

Naked Mole Rat sez:  “At your service. We rodents are here to help”.

 

I have Sickness Behavior

Been curled up in a fetal position for 14 days (but who’s counting?)  My cold has traveled south  (undoubtedly looking for warmth) into my bronchials.  I don’t want to talk to anyone, see anyone, do anything and my guilty pleasures are no longer pleasurable.  The ever-present fibromyalgia fatigue has morphed into exhaustion and if I had the energy I’d invest in stock in Puff’s-plus-lotion-tissues stock options.

Bob the Blobfish sez: “If she thinks she’s got problems try being me with a cold . . .”

BUT Glory be! I’m not being a wimp!!!!  “Those feelings are a real thing called “sickness behavior,” which is sparked by the body’s response to infection. The same chemicals that tell the immune system to rush in and fend off invading viruses also tell us to slow down; skip the eating, drinking and sex; shun social interactions; and rest.”

“Those messages are so powerful they can’t be ignored,” says Philip Chen, a rhinologist at the University of Texas, San Antonio. But that doesn’t mean we don’t try. Symptoms like a stuffy nose are obvious, Chen notes, but we’re less aware that changes in mood and behavior are also part of our bodies’ natural response to infection.”

“There is plenty of evidence that having a cold impairs moodalertness and working memory and that brain performance falls off with even minor symptoms.”

“Excuses, excuses . . . “

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!  

Invisible Illness – Prayers in search of “Cures”

I’ve written or spoken about my journey with fibromyalgia, the 40+ doctors, tens of thousands of dollars of tests and doctors telling me that nothing was wrong while handing me a psychiatric referral. 

Difference in Reactions to Fibro and Pacemaker

Fibromyalgia: Hysterical Middle-Aged Woman’s Syndrome

This Ted video got my attention.   I hope it gets yours because it’s likely you or someone you know has other invisible disorders such such as fibromyalgia, IBS, migraine, interstitial cystitis, vulvodynia and ME/CFS which affect millions and have been largely ignored by the NIH.

17 minutes

“Jen Brea’s Outrageously Successful Chronic Fatigue Syndrome (ME) TED Talk”

Despite my own struggles, I’ve been blessed with relatively mild symptoms and the ability to lead a fairly high functioning life. Long ago I lost count of all those I know, worse off than me, who have “untreatable” or  invisible illnesses – friends, former clients,  internet blogfriends, children and many who follow my blog  

To all of you who are on similar journeys – – you are in my prayers.  It’s not a cure but it’s all we’ve got . . . for now.