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”

 

Guns, Mental Health, Collective Grief

Wishes are empty

Only action will suffice

United in love

Peace begins within

Behaving with compassion

Wishing is futile

Here’s a repost from Dr. John M‘s Blog.  I follow it.  He’s a cardiologist who writes a wonderful blog.  I’m reposting. Can’t say it any better:

John Mandrolo, M.D.

John Mandrolo, M.D.

“I grew up in Connecticut. It was in a town just like Newtown. It was safe and it was quiet.

I am a father and a grandfather. My life is surrounded with children.

This weekend has been tough. You try to read or write something, but the mind wanders. Then you feel sadness. The more you think about the specifics, the sadder it gets. Your heart aches.

Our nation feels it. I recently read the words ‘collective grief.’ That about sums it up. And this too: we are collectively sorry for those poor souls.

Now I might make you mad. But it needs to be said, now more than ever.

On Guns:

My mom had only two unbreakable rules for us four kids: No guns and no motorcycles.

Guns scare me. I don’t like seeing them or being near them.

I only shot a gun once. It was during my short stint in the Boy Scouts. (I didn’t make it long in the Scouts.) I also learned to shoot a bow, but after killing a squirrel once, I felt awful, and stopped that too. Though I personally don’t like hunting, I understand its draw. Okay, many use guns to hunt.

But handguns and assault rifles? It seems senseless, farcical even, that weapons of human destruction can be acquired so easily. What are we thinking? I’m all for freedom, and understand well the Bill of Rights, but come on? Surely we can be true to our founding fathers and still maintain common sense. This must change.

On Mental Health:

It’s not fair, nor right, that those with disorders of the brain are shunned. We should fund and study mental health disorders with the same vigor that we do breast cancer and heart disease. Surely we can all agree on this. How well we care for the poor–who so often are afflicted with mental illness–says a lot about our nation’s soul.

On Society:

The word that comes to mind is ‘amplified’. Everything is so amplified. At work, the rules and regulations are amplified. Always more rules—more signs, more emails, more meetings, more lights and more alarms. More.

Then there is our constant connectedness. This too amplifies. Social media amplifies. So does cable news around the clock. Living so close together in urban centers amplifies. The noise is deafening—in the car, on the roads, in the train or airplane, in the grocery and even at home. No peace. Everywhere there is distraction and noise. These are the facts. Though the young would have trouble imagining life without smartphones and Apple products, us olders can vouch that it was equally happy. Life is just so dang amplified. Always full gas. It makes you wonder, doesn’t it?

No, I don’t think society is more violent now; in fact, it’s probably less so. And I don’t blame technology for this spate of madness.

As a contributing factor though, how we humans have come to live is hard to ignore.

I wonder about the mental effects of all this amplified noise.

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