Chronic Fatigue, Fibromyalgia, Myofascial Pain Syndrome: What Do They Have In Common?

Hello dear readers.  I am writing this from a Comfort Inn in Grand Rapids, Michigan.  I am in bed.  I have been in bed for 26 hours, except for time out in the bathtub and walking Noga the Angel Dog, which I don’t do very often because she’s trained to go on potty pads.  That’s a blessing because these days I just don’t get far from a bed or chair.  Sigh.

I seem to have Chronic Fatigue Syndrome.  Not so long ago it was called CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome.  I don’t know why they (“they” meaning the committee of chimpanzees that decides our fate by means of the ICD, or International Classification of Disease, which is constantly changing according to progress in medical science and the caprice of its members) changed it, because it seems to exactly describe the phenomena we miserable sufferers experience: constant overwhelming fatigue, and a weakened immune system that results in our catching every virus that comes within 10 miles of us.

I take this whole thing very personally, because up till the year 2008 I felt just fine, almost all of the time.  In fact, except for when I was depressed, I lived a very active, even athletic, life, working with dogs and horses, skiing, hiking, camping, aerobics, dancing, weight lifting, Tai Chi, Kung Fu….hardly sedentary, and this in addition to my long shifts on my feet in the ER and/or office.

Then–wham–I started pooping out on the last leg of my third floor apartment.  Shoot, I’d been going up and down those three floors for over a year, so why should I suddenly crap out two-thirds of the way up?  I went to my GP, who ran a bunch of tests and found me Vitamin D depleted, and with a strange kind of anemia.  Since I complained of a rapid heart beat and vague chest discomfort when climbing stairs or hills, he sent me for an echocardiogram.

That showed a bit of mitral valve prolapse, which can account for all the symptoms I was having, but the cardiologist smirked at me and said that the degree of prolapse I had could not account for my symptoms, and that the only clear result of the echo was that I was “out of shape.”  This made me furious, as I walked everywhere I went, did yoga, and of course climbed stairs.

So, since there didn’t seem to be much wrong with me (although in retrospect all those things I’ve mentioned, if added together, could certainly cause fatigue) I took my perennial state of exhaustion to be the “new normal” and pushed on through it.  Then I started getting sore.  All over.  I went for Chinese acupuncture, took herbs, and prayed a lot, but if anything I just got worse.

At that time I had a thriving Medical Acupuncture practice myself, and kept right on working.  Every once in a while I had to call and reschedule a patient because I just couldn’t muster the energy necessary to keep my own energy field intact while doing treatment.

Then disaster really struck.

I was the holistic doctor to an extended family, who were also close friends.  I was at their home a lot.  One of the grandchildren became ill with a sore throat, runny nose, fever, and general miseries.  The GP did a strep test, which was negative, and since he was a very good GP, he did an actual physical exam (a dying art) and found that the child had a slightly enlarged liver;  so he ordered tests for viruses that typically cause such signs.

The labs showed that the toddler had Cytomegalovirus (CMV), which many people contract as babies or young children.  It is in the herpes virus family that contains chickenpox, Epstein-Barr, and other common maladies.  It’s usually a benign, self-limiting illness, but like all herpes viruses, it goes dormant and hangs out in the spinal nerves, and can, uncommonly, cause a mononucleosis syndrome later in life, if the immune system takes a vacation for some reason.  In people with severely compromised immune systems, it can cause serious illness with damage to various organs.

I got it.  The serious kind.  It affected my small intestine, and I lost 30 lb., and had to take digestive enzymes for the next four years in order to digest my food and not poop it out basically unchanged.  Thank God I am over that now, and can finally eat without worrying about whether I took enough enzyme to digest whatever I am eating.

I have had five HIV tests in the last three years, because various doctors could not believe that I acquired acute CMV (proven by blood test) and didn’t have HIV, because in order to get acute CMV your immune system has to be basically nonfunctional.  All of the tests came back negative.

Why did I just go off on a seeming tangent about my various symptoms and maladies?  Because I want to make the connection between Chronic Fatigue and Immune Dysfunction, and argue that although the ICD monkeys dropped the “IDS” from “CFIDS,” they are clearly wrong, as most of you with CFS will agree.

Yesterday when I was collapsed in bed, yet unable to sleep, I started cruising the Medscape physician-only site and found a great article on the science of Chronic Fatigue.  There was a link to another article on Fibromyalgia, and I started following the breadcrumb trail of a wonderful series of articles that demonstrated that these three syndromes are finally being taken seriously, and much research is being done.

The three syndromes, Chronic Fatigue, Fibromyalgia, and Myofascial Pain Syndrome, have much in common in that all of them involve hypersensitivity in different parts of the brain and spinal cord.  There is a technical difference between the two pain syndromes, but they overlap and I don’t want to complicate things more than they already are, so let’s move on.

Although these syndromes have been recognized by medical doctors for centuries, they have most often been chalked up to neurosis and shucked off as hysterical, or a personality disorder, or imaginary, since they are mostly experienced by women.

But over the last few years, several pioneering university-based neurophysiologists have taken to looking into the possibility that people experiencing these syndromes might have abnormalities in the parts of the brain that secrete neurochemicals such as serotonin, GABA, dopamine, and others.  It turns out that people with CFIDS/Fibro/Myofascial Pain have very different neurochemistry both in brain and spinal cord, in the places where pain is processed.  They also secrete abnormally large amounts of Substance P, which is a direct cause of pain, and other chemical messengers that tell the brain, “I hurt.”

Functional MRI (fMRI) testing showed that the sensitivity of different parts of the brain was turned way up in people with CFIDS/FM/MFP, and each syndrome shows its own distinct abnormalities, which do overlap in the pain syndromes but not in CFIDS, which has its very own brain abnormality.

Almost everyone who suffers from one of the syndromes will have sleep disorders.  The scientists studied this in the sleep lab, and found that the sleep EEG (brain wave test) was abnormal in two very specific ways, in almost all of the subjects.  The abnormalities explain why our sleep is restless and un-refreshing, and also why we get our best sleep in the early morning hours.

And when the researchers looked at the demographics of the three syndromes, they discovered to their horror that the suicide rate in sufferers is TEN TIMES that of non-sufferers!  That fact is, thank God, putting their feet to the flames; and they are actively looking for specific treatments.  But for now, we are on our own.

So what can we do to help ourselves?

So far, the prescription is disappointing.

The recommendations are: eat a healthy diet low in sugars, so as not to feed the overgrowth of bacteria and yeast that many people have as a result of abnormal immunity;  gentle exercise (yeah right, I just walked my dog about 200 yards and my legs ached for hours afterward); meditation (that does help me); muscle relaxants such as gabapentin and a whole list of others; acupuncture; DBT and CBT; psychotherapy and antidepressants to deal with the psychological impact of the syndromes and resulting depression; and pain medication if necessary.

On the subject of acupuncture, I can tell you with absolute honesty that I have cured, and I do mean cured, case after case of all three syndromes.  My clients got better, went back to work and their normal lives, and didn’t come back.  I know they didn’t come back for the reason that they were cured, and not because the treatment didn’t work, because I lived in the community and saw them around, and they referred patients to me.

One woman had such bad CFS and FM that she couldn’t even get out of bed to come to my office, so I made house calls for a couple of weeks until she was strong enough to drive herself to the office for treatment.  She went back to work after about six months, and needed no further treatment.

Sigh.  I wish I could treat myself, but the points are largely on the back.  The specific points and needling techniques are not part of the Traditional Chinese Medicine toolbox, so I guess I need to find an acupuncturist who is willing to learn the special techniques for treating the syndromes.

Until then, I guess I’ll soldier on.  I know I’m not alone in this battle to simply live life.

227

Laura P. Schulman, MD, MA:

‘Nough said…..

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The Narcissist Files, Part Two

“I’m sorry, it just worked out better for me this way.  You know, it’s an hour and a half instead of two hours, it’s only $5 a day to park my car instead of free, I don’t have to stay overnight in a motel [with you]….”

This might be the only time in my life that I’ve heard my mother say “I’m sorry,” but in fact it was simply a figure of speech meaning, “I changed my mind.”

Originally, we were both supposed to fly from Charlotte on the same day, she to help install her sister in a nursing home up North, and I to go to Michigan to pick up my RV.  Since I am flying one-way and eventually coming back in another vehicle, it is problematic for me to get to the airport in Charlotte without a car.  If I were to drive myself to the airport and leave my car there, then how could I retrieve my car?  A bit complicated.

But since she was driving to the airport anyway, that seemed to be a moot point, as I could ride along with her.  There are inexpensive hotels that will keep your car without charge, if you only stay one night, and have shuttle service to the airport.  So the plan was for us to share a room, and fly our separate ways the following day.  When she got back (date unknown), her car would be waiting for her, free of charge.

For some reason known only to her, she changed plans in midstream and decided to fly from the airport that is only half an hour closer.  Her flight from the nearer airport would, in fact, take her only to Charlotte, where she would then board the original non-stop flight that I had found her.

“But there will be plenty of time between flights, and I’m only taking a carry-on.  And you can take the transport from here.  It shouldn’t be any trouble.”

There is a transport that one can book to get from here to the airport, if one reserves it several days in advance.  It’s only $45.  However, it will not take you anywhere except to the airport itself, and I need to stay in a hotel the night before, since it’s an early flight and the shuttle from here can’t start until 8 am.  So I will have to get myself from the airport to the hotel, via the hotel shuttle, with all my luggage and dog, and then kick my heels until the following morning, and take the shuttle back to the airport.  No trouble at all.

This goes against my nature.

Perhaps it’s because I grew up having to please Mrs. Narc or face the terrible consequences, that I am super-conscious of making every effort to make other people’s lives easier.  I would much rather inconvenience myself than someone else.  My therapist feels that this bending-over-backward to please others is pathological.  I only agree with her partway.

Being thoughtful of others is one of the supposed signs of empathy that makes humans different from animals, although recent studies of primates and even non-primate species are proving that other animals have empathy and even exhibit altruism, the act of giving without expecting anything in return.  That is the highest form of giving, and has been the measure of character from time out of mind.

The thing about a true narcissist is that they don’t consider the needs of anyone but themselves.  Their inconsiderate acts are not necessarily malicious–it’s just that if they perceive something to be more convenient for themselves, well, that’s the choice they make.  And if someone else is inconvenienced by their acts, well….

“Sorry, you’ll have to make your own way.  I’ve made other plans that suit me better.”

Close Encounter With The Mind Of A Narcissist

Dearest Readers, those of you who have been with me for some time are aware that I am an ACoN, which stands for Adult Child of a Narcissist.  The Narcissist in my life is my mother.

I have never understood her way of thinking, and she has never understood mine.  Therefore, our relationship has always been superficial and unsatisfactory on both sides.

Narcissists, by definition, are unable to think outside their own box.  They are the center of their own universe-no, the Universe. Anything negative that happens is someone else’s fault. Positive things, on the other hand, are clearly their own handiwork.

They thrive on praise and flattery.  The latter is as good as the former.  Sincerity is not an issue, as long as the adulation is centered on themselves.  They will work hard to achieve success and status, for the purpose of feeling important, and hopefully getting publicly honored.

Narcissists see their children as reflections of themselves.  The children are expected to bring praise and adulation to their narcissistic parent.  They must succeed and excel in academics, accomplishments, and anything that reflects well on their Narcissist.

A Narcissist expects, no–demands, respect and admiration from her children.  If she does not get it, she will retaliate with all kinds of abuse, be it physical, emotional, psychological, and sometimes even sexual, if she needs reassurance that she is still beautiful and sexy.

Somehow or other, I ended up with not one (which would have been enough, dayenu*) but two narcissists in my life–my mother, of course, and her sister.  As often happens, I was much closer to the sister when I was growing up, and her two children were my mother’s darlings.

Time has passed and the sisters have suddenly found themselves in the category of the very elderly.  My mother is 88 and her sister is, I believe, 91, although that side of the family has no compunctions about shaving a few years off their true age.  They tend to live to over 100, God help us, so what does it matter, really?

It doesn’t matter in itself, but they also don’t mind stuffing their purses with the packets of sweetener, soy sauce, ketchup, mayonnaise, that populate the tables in various types of restaurants.  One time I was sent to retrieve something out of a purse, and had to paw through enough condiments to run a fast food joint.

My mother has no problem using my father’s handicapped placard to get a space closer to the supermarket doors, even if the weather is fine.  No matter that he’s been dead for six months.  I try to explain to her that this is lying–she is in no way handicapped (she said her knee hurt, and feigned a limp for a few steps, then forgot about it and switched into her locally famous confident stride)–and it is also stealing, because she is taking a parking space that a really handicapped person might need.  I had that happen once, when I was on crutches for something, and all the handicapped spots were taken.  While waiting for one to open up, I watched several totally able-bodied people come along to their vehicles parked in spots that I could have used, had they not been stolen by the Temporarily Able Bodied.  So in Jewish Law, at least, using your late husband’s handicap tag simply because you can, is both lying and stealing.  Bad things.  But she doesn’t think it’s bad.  She thinks it’s “getting away with something,” sort of like shoplifting, which she doesn’t really see as a crime.

To get to the meat of this story, now that I have given a dissertation on Narcissistic Personality Disorder: the sister’s life has taken a devastating turn for the worse.  First off, her husband, who has been her landmark in her stormy emotional sea, and whose constant praise has sustained her, got MRSA (Multiply Resistant Staph Aureus, AKA Flesh Eating Disease) in a sore on his leg, and being 97 (although an extraordinarily active, and healthy up till now, 97), his immune system couldn’t fight it, and he seemed imminently moribund.  All the family gathered at his hospital bed, gowned and masked against the horrid disease, to await his demise.

Imagine their surprise when they showed up one day to find him sitting up eating a hearty breakfast!  Miracle.

But it didn’t last too long.  The profound dips in his blood pressure during the critical days of his illness had done their work on his brain, and now he is being cared for by his daughter, who says that he is “in and out of it.”  No telling how long he’ll last.

In the meantime my mother flew to be with her sister, which was a good thing because her sister has florid dementia and can’t be left on her own.  I think she might have had it for quite some time, but her husband kept things together and served as her stabilizer.  But now he was not at home, and to her that means he is gone, no matter how many times they brought her to see him.

But that’s not all, folks, that’s not all.  The sister had a sore place on her leg.  It was red and puffy.  My mother took her to her doctor’s office, but the doctor had no openings, so she saw a PA, who diagnosed her with MRSA empirically, (which was probably correct), did not take a culture (bad), and sent her home on the wrong medicine.  Bad, bad.  Possibly fatal.

In the meantime, my 88 year old mother is reveling in the adulation she’s getting from the rest of the family for caring for her sister.  It was the right thing to do.  But she was wallowing in an environment crawling with MRSA, since it is passed by fomites.  That’s one of my favorite words, fomites.  A fomite is any article that can pass germs from one person to another, like a hand towel.  Let’s say somebody’s sick with oh, let’s say, MRSA, and they touched an infected part of their body.  They went to wash their hands, and they opened the bathroom door with the now-contaminated hand.  The MRSA germs are now on the door handle.  Different germs live for different amounts of time on different surfaces (did you know that the HIV virus can only live less than 5 seconds on a fomite?).  MRSA can live quite a while, especially on damp surfaces like the hand towel they just dried their poorly washed contaminated hand on.

Now we have an infected bathroom.  Door handle, sink handles, hand towel.

But someone else has been impatiently waiting because they have to go to the bathroom.  The infected person comes out and closes the door.  The Someone Else opens the door, getting MRSA on their hands.  They use the toilet and flush–now it’s on the toilet handle.  Wash hands, dry on the infected hand towel…

Now you might be wondering, in that case, why doesn’t everyone come down with it?  The answer is: it’s because of the wonders of the immune system.  If you are a healthy human being with a normal immune system, you’re going to be fine, most likely.  But if you are 90 and have a weakened immune system, you might be in trouble.

How does MRSA get into our bodies in the first place?  Usually it needs a break in the skin, no matter how small, to take hold, and a weakened immune system that can’t fight it off.  So let’s say the person comes out of the bathroom, having been bathing in MRSA bacteria, and scratches an itch.  This causes a tiny break in the skin; and the MRSA germs that have been patiently hanging out under their nails just bail right into the tiny cut.

Under the right conditions, these germs can now have a holiday infecting skin, fat, muscle…whatever they can manage to spread.  Since they are Multiply Resistant Staph Aureus, that means that most of the usual antibiotics used for soft tissue infections will not work.  And the library of resistant Staph Aureus germs is growing at a frightening pace.

MRSA is not something that can or should be treated on an outpatient basis.  Anyone with a confirmed MRSA infection needs to be hospitalized and treated with the few remaining IV antibiotics left in the arsenal.  And, oh yes, they must be isolated, quarantined so that they can’t spread the disease to others.

Back to the present.  My dear aunt is now surrounded by her two terribly dysfunctional children (in their 60’s), who are almost as clueless as she is.  They are ostensibly taking her–today–to live with, or near (in a nursing home), one of them, which involves an airplane ride.  That should be interesting.

So the female cousin mentions, this morning before the flight, that both of my aunt’s legs are swollen up to the knees today.  She’s not eating. Not good.  I get this information by way of my mother, who I’m pretty sure is losing what marbles she had left.  She should have put a halt to the travel plans and had her sister hospitalized right away.  Instead, they took her on the plane (which is now a contaminated plane), with the plan of taking her to the ER when they landed.  Sigh.

As my mother was telling me this sad story, she digresses to mention the ice in her driveway and how she needs something outside (nothing critically important), and she is going to put her ice grippers on and go and get it.

Please, Mom, don’t do that.  I don’t want you to fall and get hurt.

“What, you mean you don’t want me to mess up your trip?” she says sarcastically.

It took me a minute to figure out what she was talking about.  Then I got it!  She was talking about my plans to go RVing, sometime in the near future, when the weather finally breaks.

She was projecting her thought process onto me!  That is what she would have assumed, were she in my position.  For a fleeting moment I understood how her mind works.

_______________________________________________________________________________________

*Dayenu=Hebrew for “Enough for us!”

Validating My Need For Validation

My father’s death on Yom Kippur (November 2, 2014), and the years leading up to it, launched me into a journey of self-awareness.  It’s the journey I’ve been seeking all of my life.  It’s the journey of validation of the soul, of becoming aware of my physical and personal boundaries.

Until these times, everything I’ve done has been for the purpose of seeking validation from others.  Which others?  Others, just others.  Friends, employers, patients, staff, partners, spouses, my child…

My father gave me lots of validation.  He was careful to pay attention to what I was doing and give me praise, really specifically as in, “The way you make use of line and space in this drawing is stupendous,” or, “This is an absolutely scrumptious omelette!  You’ve really outdone yourself, Laurie!”

His critiques could hurt, though.  He was always honest, but never brutal; and yet, since I hung on his every word, a negative critique either on my work or on something I had done in life stung, and I would go and cry privately.  I knew that he was right….except when he was defending my mother’s rages.

“She isn’t feeling well, you know.”

“She has her period.  She’s always a bit testy when she has her period.  You just have to cut her a wide berth.”

When he did that, I felt betrayed, abandoned, and so, so alone.

It confused me terribly when he started scolding me for standing up to her.  For one thing, she began to scream and call me names right in front of him.  When I told her that what she was doing was abusive, they both screamed back at me that it was their right to abuse me because they were my parents.

Stunned, I said, “Are you telling me that because you are my parents, that gives you the right to do or say anything you want to me?”

“That’s right!” they both shouted, in unison.

Over the next few months it became clear to me that he was suffering from Stockholm Syndrome, in which the captive, in an effort to save himself, comes to idolize the captor.  Dad’s illness caused him to become increasingly dependent on Mom for his physical care; his self-preservation became dependent on siding with her, flattering her, doing what she wanted when she wanted it…and being her whipping-boy.

He had always been able to deflect her tantrums by simply leaving and going to his studio to work, coming back late at night, giving her a chance to get over her “mad” and simmer down into petulance.

On rare occasions, if she goaded him sufficiently, he would blow up and yell at her, reducing her to tears.  She would run to their room, throw herself on the bed and sob.  He would go to his studio and work, and the next day he would bring a peace offering, a bouquet of wildflowers, dinner out, chocolates.  And then back to status quo.

I confused validation with appeasement.  I overturned every rock looking for something that would bring lasting acceptance from my mother.  Praise would have been wonderful, but simple acceptance would have been enough.  Gifts, vacations, floral arrangements, expensive meals out, elaborate meals made at home…all of these garnered momentary praise, but felt to me exactly the same as the Mother’s Day cards I made for her, the valentines, all the childish surprises I made for her, in hopes that this time she would really love me…

Look at all the things I’ve done.  I won’t list them, but just know that I have accomplished many things in my life that should have been just for me, or because they were fulfilling dreams…but at the bottom of it all, I was seeking validation from my mother.  “My daughter, the doctor….”

I wasn’t just seeking approval.  Approval is very important, but it’s temporary and tied to the deed that provoked it.

Validation is a much deeper thing.  Validation is approval on the level of the soul.  The Inner Approval.

According to Jewish law, parents are partners with God in Creation.  God utilizes the special blend of the parents’ souls and bodies (the body being a temporary dwelling for the soul) to create a new person.  It is for this reason that we are commanded to “Honor your father and your mother.”

But what happens if the parents are legitimately abusive?  Are we commanded to honor them?  Can honor be legislated?  If so, what form would that honor take?

When I first became Jewishly religious, I went into a panic about this.  It didn’t help that my mother loudly and offensively mocked my new clothes, the fact that I had chosen to cover my hair, the fact that I prayed three times a day and kept Shabbat according to Jewish Law.

On one of my trips to Israel, prior to moving there permanently, I ran to the most famous Orthodox Jewish bookstore in Jerusalem and asked if there was a book on honoring parents.  There was: “Sefer Kibud Avot.”  The Book of Honoring Parents.  It was in Hebrew.  I had just barely learned to laboriously read a little Scriptural Hebrew.  Somehow, the words of this book flew off the pages into my mind.  I swear it was a moment of Divine Inspiration.

The book said that if parents were abusive, the child still had to honor them.

But in that case, asked the book, what does “honoring them” mean?

It gave a number of examples of exceptional people whose parents abused them terribly, yet they continued to take the abuse.

For instance, one of the Rabbis who lived during the time of Jesus was sitting teaching a group of his students, when his mother came into the room and spat in his face.  He did not remark upon the incident, but continued teaching, and she went away.

There are many lessons in this story.  I have thought about this a lot.

But getting back to what Sefer Kibud Avot had to say about this incident:  Rabbi Ploni (“Ploni” is a Talmudic term for “Whoever”) was a saint.  We are mostly not saints.  If a saint could be expected to behave like that, how are we non-saints suppose to act?

The book then defined what the term “Kibud Avot (honoring your parents)” means in the case of abusive parents:

1) Make sure they have a roof over their heads

2) Clothes to cover their nakedness and for warmth

3)  Food sufficient for their nutritional needs.

In other words, according to Jewish Law we are only responsible for their basic physical needs.

The Bible tells us in no uncertain terms that we are not to purposely harm ourselves.  We are not to do anything that puts us in harm’s way.  According to Sefer Kibud Avot, this includes abusive parents.  We are not to expose ourselves to abuse from any source, and that includes from parents.  We are to distance ourselves from evil.  Willingly exposing ourselves to evil is like doing evil ourselves.

Yikes.  Validation!

That revelation came down to me in 2005.  There is actual discussion of the issue in Jewish books of law!  I was not the only one who had to deal with this problem of how to honorably take care of one’s abusive parents, without feeding the continual abuse!  Validation that I am not “imagining things,” as my mother likes to say.  (The term for this type of invalidation of another’s lived experience is gaslighting.  You can find much more on the topic of gaslighting on the blog The Invisible Scar.)

I have wrestled with this since my father became ill and I left Israel in 2011 to be with him in his final years, months, weeks, days, hours, minutes, seconds, breaths.  I found ways of dealing with my mother’s insanity on my own terms, yet it tore me apart to watch her mocking and belittling and publicly shaming him.

I’ve had a lot of help during these years.

Giving credit where credit is due, I have a wonderful advisor in the form of my therapist, with whom I have worked on and off since 2000.  She has saved my life many times.

I have also learned an enormous amount and garnered tremendous validation from the site The Invisible Scar.  The site is about surviving emotional abuse, with a focus on Adult Survivors of Narcissists (ACoN).  If anyone here feels that they have suffered at the hands of a narcissistic parent or caregiver, I highly recommend that they visit The Invisible Scar.

The Invisible Scar is run by a Christian organization, although it maintains religious neutrality.  However, I highly recommend the Christian ministry site that is its source.  Here you will find an extensive questionnaire that will result in your knowing whether or not you have been pillaged by a narcissist in your life.  I found myself going down their list going, uh-huh, uh-huh, uh-huh, nope, uh-huh….my life has been parasitized by my narcissistic mother, enabled by my passive father.   Jeez.

If you are a Christian, or are interested in the Christian perspective on what to do if you discover that you are being abused by a parent or significant other, I cannot imagine a better place to find diagnostic tools, validation, and advice, backed up by Scripture that applies universally to any ethical system or religion.  I am clearly not a Christian, but I know wisdom when I encounter it, and this is down-to-earth, straight-to-the-core, cut-to-the-chase wisdom.

Here’s a gift from The Invisible Scar that showed up in my inbox a couple of days ago:  two professors from the University of Georgia have asked The Invisible Scar to help recruit volunteers to take a survey on the parental communication skills of Adult Children of a Narcissist.  If you’re like me, you might be anxious (in my case, obsessed) about not repeating history–in other words, not passing on the terrible heritage of the emotional abuse that you suffered at the whims of the Narcissist in your life.  If you’d like to participate in the survey, go here. It only takes a few minutes.

You might find it validating!

Depression Comic 225 by Clay: Numbness

Laura P. Schulman, MD, MA:

It’s always a challenge for me to distinguish grief and sadness from depression. I have to ask myself: is this grief? Is this appropriate sadness for some loss? Or am I actually depressed, and should do something about it, if I can? Today I am very sad because I gave up doing something I really wanted to do, but I had to acknowledge that I can’t do it because of the arthritis in my neck and shoulder and hands, and the fact that the course I had signed up for begins at 8 am. In order to get up at 8 am I would have to take my meds at 6 pm, but that would mean missing the important evening practice sessions. I cancelled, and now I am overcome with sadness. I hope I can use the time I would have spent taking the course to go somewhere beautiful in my new camper van…but this comic of Clay’s describes me to a “T” most of the time. A lot of it comes from the combination of being depressed and the enormous amount of trauma I’ve endured both in my personal life, and in my role as a pediatric emergency physician, seeing and attending to so many tragedies…so many times when I had to tell parents and loved ones, “I’m sorry…we did everything we could do, but we couldn’t save your….” You have to become numb, or you’ll just go instantly crazy. I never cried one tear during those days and nights, but I was afraid to go to sleep because of the dreams…and my only friends were also doctors…sound familiar? Like war veterans. We were on the battle front of life and death, and the PTSD is just the same as war veterans. We are the wounded warriors, and we have to stay numb because if we start feeling, all those dreadful memories might come flooding back…but I’ve learned to distinguish sadness and grief from depression and PTSD, but I am still afraid to go to sleep…so I take four different drugs to cause unconsciousness, and they don’t wear off until 9 am, so no refresher acupuncture course for me. And I’m genuinely sad about that, and about the conditions that limit my abilities. As my grandfather, may he rest in peace, used to say: “If you have your health you have everything.” And he knew that by experience. He lived with depression his whole life, in the days when it was considered a shameful thing, so he never got treated and died a bitter old man. And he was numb to everything, or at least he never had a cheerful word about anything. But he did spin quarters for me, and bought me tiny loaves of bread, and slathered me with olive oil when we went to the beach. I can still remember the grit of sand in my mouth, and becoming more and more covered with sand as it stuck to my skin. But even then, I saw things as if from a distance, already numb at eight years old. I did not cry when he died.

Originally posted on depression comix (WP.com):

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Chronic Fatigue Syndrome is “Real,” Institute Of Medicine Declares

The Institute of Medicine has proclaimed that Chronic Fatigue Syndrome is real.

Oh. My. God.

Does this mean that those of us who suffer from it will no longer be branded as malingerers, neurotics, and cranks?

Maybe.

But only if our PCP reads the article.

But wait!  We now have proof.  We have a weapon!

Print out the article and bring it with you to your next visit.  Your PCP either will or will not get defensive.  You may or may not have the ability to change PCPs if they get their back up about it.

But the main thing is not so much about our doctors.  It’s about US.  It’s about the medical arm of the National Institutes of Health, founded in the 1800s by none other than Abraham Lincoln, issuing a position statement declaring that CFS is a real disease, and providing an ICD10 code for it, which not only legitimizes it as a proper diagnosis, but gives providers a billing code and a way to justify medication choices.  If any effective medications are found, that is.

There is one, and only one, diagnostic criterion for CFS: post-exertional exhaustion out of proportion to the exertion.

For instance, if I do ten minutes of gentle yoga, I have to crash out in my recliner for an hour.  Clean the snow off the front steps for fifteen minutes: two hours and counting, in the recliner.

A few years ago, when I started having trouble climbing three flights of stairs after having done so effortlessly for years, my PCP was concerned about my heart and sent me for an ultrasound.  The doctor who read the study sneered: “You’re out of shape, that’s all!  All your ultrasound shows is exercise intolerance.”

I tried to explain that I dragged myself from one end of hilly Jerusalem to the other every day, but instead of getting stronger I was getting more and more exhausted.  He snorted and pointed at the door.  I slunk out, feeling foolish and invalidated.

So rejoice, O Chronically Fatigued!  We are Recognized, we are Real, we are….tired.

 

Brighten Up Your Day

This amazing Freestyle dance will make you smile….it made me cry, because the love relationship between the trainer and her dog is so strong and so sweet (plus I’m a little depressed, so anything makes me cry)….enjoy!

http://www.coolestone.com/media/11700/Dogdance-Freestyle—Sandra-and-Lizzy/

Can’t Do A Thing About The @#$%^ Weather!

When last I posted, I was lamenting the fact that the weather was dashing my plans to make a quick run to Michigan and retrieve my new RV (don’t look at the price, I got one that was a demo and much MUCH cheaper, but exactly the same thing!).

As it turned out, I couldn’t have gone anyway because the flights got so snarled up due to heavy snows and ice storms that no one was flying anywhere.  Up here on my mountain, there were a few inches of snow topped with a crunchy layer of ice.  No way I could even have made it to the airport, so I canceled my flight last night.  That turned out to be the wrong thing to do, because since I never checked in for the flight, I had to pay for it even though it ended up being canceled.  Go figure.  Better than being stuck in the damn airport for who knows how long, anyway.

But never mind the flight–my most urgent issue with the weather has to do with my arthritic joints.  Every time I move my right shoulder it goes “clunk.”  Sometimes the clunk is accompanied by a grating sort of pain, and sometimes not.  I have a touch (OK, maybe more than a touch) of fear when that happens, because my dad (may he rest in peace) had similar clunks that just got worse and worse.  I’m sure that’s what will happen with mine, because so far I’m following in his arthritic footsteps.  Too bad I didn’t inherit his artistic talent and drive to make art, along with the arthritis!

Last night was a busy one as I searched for a comfortable position for my arthritic neck.  No rest for the weary.  So today I’m yawning.  I hope I’ll get some sleep tonight.

I can’t take most pain meds, as they either cause me to stop breathing or to itch.  I don’t know which is worse.  If I stopped breathing suddenly, that would make the pain go away, but from prior experience I can tell you that the road to apnea is fraught with much wheezing and gurgling.  I would probably panic and make use of the dreaded Epi-Pen, the epinephrine auto-injector with a needle the size of an elephant’s trunk. Then I’d be back at square one, except now with a large bleeding hole in my thigh.

So I’m ingesting as much turmeric as I can stomach, which does help, and slathering my homemade Frankincense Oil concoction all over my shoulder and neck.  My hair is greasy with it, but since I can’t get down my icy dirt driveway and no one can get up it either, I have no worries about being seen with straw-hair.

I am grateful that the power has stayed on, and the propane seems to be holding out.  I got a $600 delivery just before it precipitated; but then the temperatures dropped into the single digits with winds that blew off part of the roof of my shed, so I have no idea how much fuel I have left.  I’m not going out to the tank and risking busting my arse on the slippery stairs.  The salt I spread before the storm merely melted some of the snow; and it froze back up, creating a skating rink on my stairs.  Fuck it, I say.  I turned the heat down to 65 and put on another layer of silk underwear.  That’s the best, I’ve found, because it adds warmth without bulk and you can layer it without feeling like the Michelin Tire Man.

michelin

 

I’ve been using my time somewhat productively.  For some reason, even though I spend most days holed up away from the world, for the past couple of days I’ve been noticing what a horrid cluttered mess I live in. It’s actually bothering me.

Even more astonishing: I’ve been doing something about it!  Going through piles of papers–I am ashamed to say that I am finding things in my “action necessary” pile that date back to 2013…sigh…I need a personal secretary.  A volunteer, because after the RV I can’t pay anybody.

I do still have a little whisky, though, so at leastI can offer a bit of merriment in the evenings.  Alcoholics will have to make do with tea.  I have a lot of tea, ranging from strong black stuff to the delicious mint I’m sipping now.  That’s how it goes around here: tea in the daytime, whisky and smokes at night.  I’m single and I do what I want!

And now it’s time to get back to reading my mail from a couple of years ago.  Who knows, there could be a check for $50,000 hiding among the junk mail!  My luck, it would have expired, like some of the coupons and offers I’ve already unearthed.

Oh shoot, I can’t worry about that.  My neck hurts too much.  Did I show you the excellent hard shell bionic brace the spine people gave me?  No?  Maybe next time.

I can’t quite tell which hurts worse, the brace cutting into the back of my skull, or my neck without the brace.

But it looks really cool on.  That’s what I used to tell the fancy ladies who came into the Michigan Avenue high fashion boutique I worked in, the winter quarter I had to take off from undergraduate school in Chicago, to make money for tuition: “This Armani is a fabulous piece.  The rack doesn’t nearly do it justice.  It looks incredible on!”  Then once you got it on her, of course it needed the belt, the bag, the necklace, the earrings–accessorize!  That’s where you made your money, the accessories.

So I have developed an entire line of accessories to go with the Amazing Bionic Neck Brace–scarves, mostly, because that’s really all you can do with a neck brace, but since I have a vast collection of scarves and hats, it comes out looking rather…surreal, like an alien sister to the Michelin Tire Man.

Unfortunately, or perhaps fortunately, I got fired from the Michigan Avenue Boutique (right across the street from Tiffany’s!) because I couldn’t sell water in the desert, let alone high fashion when I myself owned a total of two outfits, very worn and tatty.  Now I have piles of clothes.  They are lying around in laundry baskets littering up the place.  Most of them are also falling apart. Some date from the 1980’s when I was three sizes smaller.  “Oh, maybe I’ll get back into them someday,” I think to myself.

Between you and me, I rather doubt it.  Maybe I should make a pile to take to the resale shop.  But how can I part with them, when each one holds so much history?  This is the shirt I wore when we went to the Grand Canyon.  This natty pair of slacks is the one I wore on my first date, two husbands ago.  Never mind that they only fit up to my ankles.  Now that I am eating healthy food (after I finish this bag of potato chips), it’s possible that…oh darn, I’ve ripped them!  A whole chapter of my life, gone!

I must get back to the pile of mail.

Not So Fast

Uh-oh.  My dream of hitting the road and being a wandering gypsy might get a little sidetracked.  My aunt and uncle both have MRSA (Multiply Resistant Staph Aureus) and the entire family is in an uproar.  They are both very elderly, and between the illness and the stress they have both gone off the deep end into dementia.  Various family members are taking turns caring for them.  I haven’t been tapped yet, but it seems only a matter of time…

And yet I still intend to pick up my RV as planned, drive it home, pack up, and if need be drive to (chilly) Florida where they live.  I do worry about myself, because my immune system is not so good.  I hope I can avoid yet another family obligation, as selfish as that sounds.

I’ll keep you all posted on the developments…

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