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”

 

The Aftermath of a Health Crisis

Health Crisis

Mind Body And Soul

None unscathed

P1020309

In the aftermath of all health issues imilar situations, feelings, responses occur for all people trying to find the NEW NORMAL after all chronic physical impairments, illnesses and conditions.

I URGE you to read the rest of this excellent post at My Heart Sisters to have a first person account. 

Dr Keddy goes into detail about the impact of her unexpected heart attack once back home.  Here’s how she begins:

Dr. Barbara Keddy: “It was the worst thing that has ever happened to me and my life has been changed forever. I now have the label of a ‘cardiac patient’. I am a new member of a club I did not want to join and worse, I don’t know the ins and outs of this organization. There is so much to learn and I am dragging my feet as I learn, wishing there was some way to resign from the membership.”

Fibromyalgia, CFS Medical News

My first reaction was “I’m back” when I started taking a dopamine enhancer (Mirapex) for my fibromyalgia. “My” fibromyalgia!  Sounds like I’m possessive OF it instead of possessed BY it. . ..trust me, I’d gladly let it go, give it up, dump it, get rid of it, send it away . . . sorry, just got on a roll . . .

Back to the point of this post:

Even if you don’t have fibro or Chronic fatigue chances are you know someone who does.  It is estimated there are 10 million people with the condition in the United States alone.

I urge you to take at least a quick look at the latest edition of Fibromyalgia, Chronic Pain newsletter.  There are several links to the latest in medical information in the newsletter.

http://www.fmcpaware.org/user-subscriptions/archive/view/mailid-66/key-0fbd2e860c4cbfd5c4294e4c6e2b3dc1/subid-18999-3034782d559f8fa1f3990cf0a9d7a334

In the event you aren’t wanting to click on the link here’s one of the articles that pertains to dopamine:

Dopamine in Fibromyalgia & Chronic Fatigue Syndrome
Low Dopamine: How It Makes You Feel & How to Fix It
By Adrienne Dellwo, About.com Guide

“Dopamine has different roles in different areas of your brain. In the thinking areas, it makes you able to focus your attention. Low levels of dopamine in this area are linked with ADD/ADHD. In the movement areas, it helps you control how your body moves. Extremely low levels here lead to Parkinson’s disease, which is characterized by tremors and problems with balance and coordination.

People with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) generally have low dopamine levels as well. Symptoms of both conditions include both cognitive effects as well as movement and balance problems.

Low Dopamine

No neurotransmitter acts alone. They all work together in a complex web of activity that scientists are really just beginning to understand. Still, experts have been able to associate different neurotransmitter imbalances with certain conditions and symptoms and find some ways to help boost or decrease activity.

Low dopamine levels are associated with the following symptoms:

Stiff, rigid, achy muscles
Tremors  (restless leg)
Impaired fine motor skills
Cognitive impairment (called brain fog or fibro fog)
Inability to focus attention
Poor balance and coordination
Strange walking pattern (gait), frequently with small steps
High levels of dopamine, on the other hand, are associated with addiction, euphoria, hyperstimulation, excessive focus, suspicion, and the inability to separate what is important from what isn’t. If you’re taking medication that increases your dopamine levels, you should let your doctor know if you have symptoms of high dopamine, which is associated with psychological side effects.

Neuroleptic (antipsychotic) drugs lower dopamine levels, so if you’re taking anything in this class for another condition, you’ll want to talk to your doctor about symptoms that could be related to low dopamine. Common drugs in this class include:

Clozaril (clozapine)
Haldol (haloperidol)
Risperdal (risperidone)
Seroquel (quetiapine)
Zyprexa (olanzapine)

Increasing the Availability of Dopamine

Drug treatment of low dopamine levels may include stimulant therapy with Ritalin, Concerta and Methadate (all of which contain methylphenidate).

We don’t have a lot of research confirming that food can boost dopamine levels in your brain, and even if it can, it would take prohibitively huge amounts to have the desired effect. In spite of the lack of hard evidence, some practitioners recommend:

Tea (black or green)
Apples, bananas & watermelon
Blueberry extract
Red wine
Beets, beans & legumes
Chicken
Cheese
Eggs
Fish
Wheat germ

Supplements believed to help raise dopamine levels include:

NADH
L-Theanine (supplement form of amino acid unique to black and green tea)
Omega-3 fatty acids, from fish oil or flax seed oil
Rhodiola rosea
A note on tea & theanine: Studies show theanine increases both norepinephrine and dopamine while lowering glutamate levels, all of which can have a positive effect on those of us with FMS and ME/CFS. Research is mixed, however, on how theanine impacts serotonin levels. If you decide to try theanine, track your symptoms to see if serotonin-related symptoms get worse.

While it’s generally safe to experiment with these kinds of foods, don’t expect miracles and avoid extreme changes to your diet. Be sure to make changes slowly, and track your dietary changes and symptoms in a symptom journal to get an accurate gauge of what may be helping. You should always work with your doctor to decide what methods to try and how successful your treatments are.”

The Single Most Effective Antidote for Anxiety.

(This is a repost, especially for my friends who look outside their windows and do not see what I see)

If I  watched the news all day and evening I would KNOW that the world is in its last days:  Earthquakes, tornadoes, nuclear reactor melt-downs, flooding, war, starvation, killing,  financial collapse, drought, fires . . . EVERYWHERE.

I look out the window, past the TV.  It’s sunny, warm and lovely.  My brain, however, has already been cued by the words, thoughts and images of death, dying and devastation.  My brain as a response has released the neurochemistry of anxiety into the cells of my body.  And I FEEL the anxiety in every fiber of my being.

Chronically Running for Our Life

All our brains chronically perceive danger with any chronic emotional or physical condition.  The body being continually under siege, in pain, sends signals to the brain which get us ready to flee or fight off our enemy.  Muscle tension is needed for running like hell or slugging it out.  Now’s not the time to relax if you want to live.

The opposite of DANGER is SAFETY.

Here’s one of the very best mind-body techniques, and easiest, way to let your brain practice calm.   Best of all it requires no Rx, no money, no time and you take it with you where ever you go. I have taught this hundreds, maybe thousands, of times and it absolutely works . . .when you do it.

Chronically Safe Signal:

1. Take a deep breath through your nose.
2. Hold the breath for just a moment
3. As you release the breath, through your nose, very gently, say silently: “I’m safe.” (Be kind to your brain.  It’s just trying to keep you from being eaten alive)

Sound too simple!?

Our brains are relatively simple in that brains can not tell the difference between when we are actually in danger (anxiety is our brain’s way of keeping us on alert for danger so we can survive) or when we perceive danger through thoughts or other cues.

Imagine a snake, a spider, anything that you are afraid of. Your brain will signal “danger” “danger” and flood you with the neurochemistry of fear. Watch a sad movie and your brain will flood you with the neurochemistry of sadness and, if you are like me, sob like a baby.
Soooooooooo, tell your brain you are safe and it will stop the neurochemistry of fear and anxiety. It’s not instant cup’o’soup because once you are flooded with the anxious feeling it will take about 20 minutes or so for theneurochemistry to metabolize out of your body’s cells.  No matter how you FEEL keep giving your brain the “I’m Safe” cue.

Here’s the Key

Yoga, meditation, mindfulness prayer, listening to relaxation recordings all help.  However, to break into a CHRONIC cycle we need to chronically signal our brains to stop sending the neurochemistry of the stress response to our bodies. Let your brain know that no one is throwing grenades at you, animals are not trying to eat you alive, you are not in danger.  And the easiest way is to . . .

 . . . CHRONICALLY “Sprinkle” the Breath/I’m safe cue throughout the day and evening. It’s a good idea to get a cue(s) to remind yourself to do this. A post-it-note on the bathroom mirror, every time your phone rings, a note in your appointment book etc.

You HAVE to breathe anyway so you’ve got nothing to lose — except your stress response.

In the midst of peace

Hypnotic danger signals

 My companion, fear

ME a Stress Case? . . . I Don’t Think So. . . This Anxiety Reduction Technique is for YOU

Self Reflection

I’m not a worrier by nature, I’m not anxiety riddenI teach OTHERS how to relax, how to reduce THEIR tension.

Getting my hair done yesterday – yes, I still have my purple streaksI had nothing better to do than focus on me.  That’s what my hairdresser was doing so I figured I could too.

Whoa! My entire body was tense.

I relaxed my muscles. They tensed up againI relaxed again.  Muscles from head to toe tensed up again as if I were a trained athlete who had practiced over and over until my muscle memory was so strong practice was no longer needed.

Flashing before my eyes was every therapy session I’ve ever had with anyone who had anxiety, PTSD, was a caretaker, had a sick loved one, experienced loss of any kind, anticipated loss, was in pain or had a CHRONIC CONDITION. . . .

I’ve explained “it” so many times that like a well-trained athlete my mind no longer has to think.  I automatically recognize the stress response in others (others being the operant word).

Chronically Running for Our Life

I know that your brain (NOT MINE OF COURSE) chronically perceives danger with any chronic emotional or physical condition.  The body being continually under siege, in pain, sends signals to the brain which get us ready to flee or fight off our enemy.  Muscle tension is needed for running like hell or slugging it out.  Now’s not the time to relax if you want to live.

The opposite of DANGER is SAFETY.

Here’s one of the very best mind-body techniques, and easiest, way to let your brain practice calm.   Best of all it requires no Rx, no money, no time and you take it with you where ever you go. I have taught this hundreds, maybe thousands, of times and it absolutely works (I of course don’t need to do it.  After all I teach it).

Chronically Safe Signal:

1. Take a deep breath through your nose.
2. Hold the breath for just a moment
3. As you release the breath, through your nose, very gently, say silently: “Thank you brain, I’m safe.” (Be kind to your brain.  It’s just trying to keep you from being eaten alive)

Sound too simple!?

Our brains are relatively simple in that brains can not tell the difference between when we are actually in danger (anxiety is our brain’s way of keeping us on alert for danger so we can survive) or when we perceive danger through thoughts or other cues.

Imagine a snake, a spider, anything that you are afraid of. Your brain will signal “danger! danger!” and flood your cells with the neurochemistry of fear. Watch a sad movie and your brain will flood you with the neurochemistry of sadness and, if you are like me, sob like a baby.
Soooooooooo, tell your brain you are safe and it will stop the neurochemistry of fear and anxiety. It’s not instant cup’o’soup because once you are flooded with the anxious feeling it will take about 20 minutes or so for the neurochemistry to metabolize out of your body’s cells.  No matter how you FEEL keep giving your brain the “I’m Safe” cue.

Here’s the Key

Yoga, meditation, mindfulness prayer, listening to relaxation recordings all help.  However, to break into a CHRONIC cycle you need to chronically signal your brain to stop sending the neurochemistry of the stress response to your body. Let your brain know that no one is throwing grenades at you, animals are not trying to eat you alive, you are not in danger.

CHRONICALLY “Sprinkle” the Breath/I’m safe cue throughout the day and evening. It’s a good idea to get a cue(s) to remind yourself to do this. A post-it-note on the bathroom mirror, every time your phone rings, a note in your appointment book etc.

You HAVE to breathe anyway so you’ve got nothing to lose — except your stress response!

Self Realization

I was going to name this post “Teachers Teach What they Need to Learn” but I figured out that I had a legitimate reason to be stressed while my hair was getting done because

my hair dresser had a scissors in one hand

and with the other hand pointed a hair dryer to my head.

A little Bit Country, A Little Bit Rock ‘n Roll SupportShop

Click here to hear Donny & Marie sing!

http://www.tsrocks.com/d/donny_osmond_texts/a_little_bit_country_a_little_bit_rock_n_roll.html

Beginning February 1st I am facilitating a special 8 week Group for people with life-altering medical conditions.  I call it a SupportShop because it’s “a little bit support group and  a little bit workshop” (apologies to Donny & Marie).

It’s called Purposely Positive.

When I was first diagnosed with fibromyalgia I attended a couple of support groups.  I walked away feeling worse than when I arrive.  The focus was primarily people’s anger over their medical treatment (or lack thereof), the things that they weren’t able to do and the despair that it would never be different.

I never went back. They were singing a different tune than I needed to hear.

If you are in the vicinity or know someone who might be interested please let them know about Purposely Positive SupportShop

For the rest of you I will be posting the therapeutic creative expression exercises we will be doing HERE on the blog.

Even though it’ll be only one 1/2 of the duo,  you can still belt out the lyrics (whether or not you can carry a tune).

Rock on!