Fibromyalgia, monkey mind and my thoughts.

Living with chronic pain presents me with some unique challenges and I have to try to find a unique outlook on life or go crazy with the futility of it all.  For those who do not suffer with chronic pain they probably have other, valid issues but I hope they don’t feel as debilitated. How do those of us with chronic pain cope with the days spent in bed? Thats one challenge. What do chronic pain sufferers do with our mind when the brain fog lifts? That’s another challenge. What do we think about when our bodies leave us housebound, or bed bound but our minds are still active? Challenge! I have a friend who is challenged not only with chronic pain but she has no choice but to work for a living. Regardless of how much pain she is in she has to go to work or she won’t eat. She has no family to support her and can’t seem to get onto disability. So she goes to work and comes home to her bed. I feel guilty seeing her work in such pain the way she does. Her pain makes me feel guilty! Very guilty, especially the days when I am laying around in a brain fog while she’s at work. What do I do with my mind that day? I spend a lot of time thinking. And wondering. Why? Why do I have this? Do I deserve this? Is this karma? Can I make some new karma? I feel so guilty! Should I get a job like hers? I feel guilty that I’m not doing like her or trying harder so then I think maybe if I’m really good today I will make some new karma. On and on my thoughts jump from guilty thought to guilty thought.

I sometimes wonder if my guilt is only about fibromyalgia? Perhaps my guilt is a deeply dug in pattern that started in my mind before fibro? I can recall feeling guilty as a kid. When my parents fought it was my fault somehow. If we were short of money I “knew” that me needing those new shoes was the cause of the family’s money problems. When someone would be upset with me I just knew it was my fault regardless of how cruel they acted. If I didn’t get A’s on my report card I felt guilty. If my clothes weren’t as nice as the other kids I felt guilty. I felt guilty because we lived in a boarding house my parents ran and we did not have the white picket fence. So yes, my guilt is long term.

As an adult I have learned about perfectionism. I am a perfectionist. That doesn’t mean I do everything perfect, it just means that if anything isn’t “perfect” in MY mind then I’m guilty and feel very anxious. And of course I set standards for myself that I would never impose on anyone else so my perfectionism leaves me feeling guilty and depleted no matter the circumstances. Nobody could reach the standards I set for myself. I demand 100% from my life 24/7 but I never reach that. Who could?

Now, as an adult, I also feel guilty because I have fibromyalgia. I wonder guiltily if maybe I have this because I ate too much sugar when I was younger. Maybe I shouldn’t have done LSD in the 60’s. Maybe it’s because I don’t exercise enough. Maybe it’s because I eat popcorn at the movies. Is that popcorn made from GMO corn? Guilt! Maybe it’s because I don’t go to the doctor enough. Maybe it’s because I had that surgery when I was 17. Like that was my fault? I had no say in it being underage but no matter. Maybe it was the surgery when I was 12? Maybe I’m too anxious? Maybe I ‘m depressed and maybe I should be taking some anti anxiety medicine. Personally I am against drugs that mask symptoms. Maybe I’m guilty for not taking them?  Maybe I should take those pills. Rawk Rawk Rawk Rak Rawk. My monkey mind can go on and on and on beating me up over and over day after day.

I could go on but this feels tedious when I read it back to myself. My point is, this guilt is a well worn groove in my mind. This guilt groove started when I was around 4 which was the first sexual abuse. (By the way. Has anyone noticed how many fibromyalgia sufferers are women and how many of them were sexually abused as children)? Over the years this guilt groove has become an automaticity. I no longer have to have the specific thought that, “I’m guilty”. I just get an ugly feeling, a clutching in my stomach, a darkness in my mind. No thoughts SEEM to be there, I just feel really down and want sleep to get rid of that feeling.

Recently I read a book that helped me with this. The author is Stephen Wolinsky and the book is called TRANCES PEOPLE LIVE. He talks about how we continually think about something in our life, such as my thoughts about guilt, then we build our story around it and it becomes part of our mental landscape to such an extent that our story becomes like a trance. We walk around believing what we tell ourself in our story and it’s usually not true if you ask any good friend, but we obey that belief like it’s true. I walk around in the trance that I am guilty. No matter what I do, no matter who tells me I’m doing that well or that I did a good job on this I believe that I am guilty. But the good news is, that trance can be broken. Once we know we are in the trance, we can undo the trance.

So, with my guilt, I began to watch so I could notice when I got this “bad” feeling so I could pause, step back, take a look at it, and “see” the bad feeling. I would “see” the feeling could be verbalized as “guilt”. I could “see” that I felt guilt because I hadn’t done the dishes, or made my bed because today is a tired day. My guilt would progress to feeling degraded and then I would want to isolate from everyone believing they think I’m guilty too. When I searched my mind at the time of this generalized anxiety I was amazed at the thoughts I harbor. There were reams of thoughts behind the generalized feeling of “ugh”.

Once I saw these thoughts I began a practice that I had learned from a course I once took. Just say NO! I remember a time I recently practiced this. I was in the kitchen leaning over the sink and this generalized feeling of ‘ugh” swept over me, so I paused. I looked out the window. I examined my thoughts. They went something like this, “I don’t have a job, I’m a loser, I don’t do anything right, nobody likes me, I have fibro because I’m a loser plus, I think I’m ugly.” So I said to those thoughts, NO!

I pushed them away. I did not try to figure out why I had those thoughts. I did not try to figure out when they started or what happened when I was a kid that they started. No need for more thinking or more monkey mind. I practiced saying NO! to my monkey mind over the next few days and lo and behold a change occurred. I found that for minutes at a time I would feel in awe of the beautiful tree outside my window or I would feel proud of my painting or I would feel good about exercising my dogs or I would be proud of the fact that I do yoga every day and eat vegetarian and take really good care of myself even though the dishes aren’t done today. I marveled at these moments of just plain old feeling peace, calmness and a bit of joy.

What is causing this calm feeling I wondered. So, I paused, stepped back and watched my calmness. Aha. I realized I was opening the door a crack in the dark little room I call my mind. My thoughts were no longer on automatic. My monkey mind was taking a nap. When I removed those dark, monkey mind, jumble of thoughts some light appeared. I began to practice more and more as feelings of joy or peace are not very common to me since fibromyalgia. (I also realized that this is a form of meditation called Vipassana or mindfulness. You can google “mindfulness meditation” if you are interested).

Is my fibromyalgia any better? Is my pain any less? I don’t let myself think about that when it comes to saying NO! to my thoughts. I just want to enjoy my calmness and the joy and not try to grade my performance or put a value on it because then I’ll just go back to my old guilt groove because I’m probably not doing it enough, or maybe I’m not doing it right because that’s the way my monkey mind works. I know now that it’s my monkey mind demanding “proof that this works”, telling me to measure my pain and then give it a grade. NO! I feel joy and calmness and peace. That’s what counts. My body is only a vehicle for ME and ME feels calm. “I” feel calm but my body may feel something else. That’s ok. I feel calm. That “I” is the only part of this package called human being that really counts.

I look at this way.  My body has fibro. My body is going to feel pain until…….so why not take my joy when I can. I now realize that my thoughts have a everything to do with how much joy I feel or don’t feel. Joy doesn’t happen by accident. Neither does depression. My thoughts create my emotions and they can be under my control so saying NO! to my thoughts is a good way to achieve joy instead of depression. Therefore I now have a tool that increases my ability to live with emotions like joy even if my body has pain.  I am very grateful for that tool.

Fibromyalgia, Forgiveness and Patience

Fibromyalgia has many facets just like a diamond. Each of those facets reflect light though some more than other. The biggest facet of fibromyalgia is the physical pain facet which is of prime importance to those us who have fibro.  Then there’s the facet we call brain fog and the facet we call confusion, and the facet of, “why do I have this” and the facet of the frustration caused for and by others who don’t get it.  Sometimes friends and family just don’t get it.  They might think we are a hypochondriac?  Lazy?  A person who just loves to whine? Or perhaps they think or verbalize that you are just trying to get out of some task.  Some of those facets feel pretty dark to us.

There’s one facet that’s even worse.  Sometimes doctors, who we are supposed to trust, don’t get it either.  Sometimes they want to give us anti depressants.  Does that mean we have this pain because we are depressed?  Sometimes the doctor wants to give us some pain killer drugs that are known to be addictive or they have terrible side effects.  Add that to the “attitude” some doctors express, such as exasperation, and we can get pretty freakin irritable and feel pretty freakin dark.

Perhaps today has been a dark  day.  Perhaps it started out with your spouse acting exasperated and maybe even making a critical comment.  (As spouse rolls his/her eyes they say, can you at LEAST get THIS done today), as they walk out the door slamming it as an exclamation point!  Now your insides feel dark and hollow as you are left alone with your shame and anguish.

Then, in rushes the anger.  What an ——– he is!  We begin thinking about what we should have said, or could have said, and will say next time.  Maybe we have a little cry.  Why do I have this.  What did I do to deserve this?  I’m so stiff I can hardly pick up the towels off the floor where HE left them!  The brain fog is creeping in….aren’t I supposed to be doing something?  The fatigue is creeping in. .. I’m going to sit down for just a minute.  Now you’re down and out on the sofa or the bed filled with anger, shame and anguish blaming yourself for being this way.  Your mind can feel just as dark as a room with all the curtains pulled.

How can I end this suffering you ask yourself?  Well every day is a new and different challenge but I have found one method that helps me on “some” days.  I can’t necessarily stop the pain but the mental anguish, I have to chosen to believe, is under my control.  My mind is MY mind and I believe my mind is made up of my thoughts!  Nobody else can change my mind or my thoughts except me.  How can I change my mind?  Change my thoughts.  There is a saying that has been going around for a while that says pain may be unavoidable but suffering is optional.  Hmmm?  When I frst heard that I wanted to punch someone.  Then I began to think about  it.

Usually my anger, shame and anguish is directed at somebody and that usually includes myself.  That part IS in my mind.  Those emotions are based on my thoughts!  I might blame someone for their nasty comments, or for not understanding or I might blame myself for having this fibromyalgia or for not doing or saying the right thing at the right time.  Those are thoughts.  My thoughts.  I will usually blame myself for at least some imperfection of mine that day and wish real hard that I could be better or at least perfect!  Maybe then others would understand my pain if I could just not be upset about this or that.

When I began thinking about “suffering is optional” I started sifting through my mind to separate pain from from suffering and my thoughts.

This is a mental video I play for myself that helps relieve MY suffering, not necessarily my pain, but it changes my thoughts at least. In this mental video I tried to take a birds eye view of my life’s frustrations and suffering.  I imagine that me, my spouse, my friends, and my doctors, helpers, work mates and all those other relatives are similar to a litter of puppies.  We are all in the same big box rolling on top of each other, peeing and pooping on each other oblivious to the fact that human beings think that’s gross.  After all we are still, just puppies.  I guess humans in this case would be akin to angels watching from above who are more advanced than us.

These puppies roll in each others mess and they wrestle around, some times playfully and sometimes not, and they sometimes get irritated with each other, and they bite each other’s nose or ankle bone and yelp in pain and withdraw to their corner then later they roll around and it begins all over again.

Some puppies are alpha dogs, some puppies are shy, some puppies are the runt of the litter and those find it very hard to live with alpha dogs.  Some puppies get umbilical cord infections, or kennel cough and the others shun him until he’s well enough to join the rough housing again.   Some shy puppies get nervous and the runts of the litter might even withdraw to a corner.  Each puppy has his unique personality and reacts to life through his own lens.

I think this is how God sees us.  (you can fill in your defining image of who or what God is to you because that’s very personal) I do believe there is a higher source of some kind and I like to call it God.  I don’t think “s/”he or “it”  blames us when we lift our leg and pee on each other like those puppies.  I don’t think “God” would give us dirty looks or negative vibes because we bite each other’s nose accidentally or otherwise.  I don’t think “God favors alpha dogs over the runt of the litter.  I think “s/he” or “it” understands that we are all unique and different to each other and that we have  just not yet learned that when we lift our leg we should make sure we don’t aim it at another puppy.  “God” knows that eventually we will learn that lesson and s/he also knows that perhaps YOU already learned that particular lesson ten times over therefore you get impatient with the puppies that have not learned it.  But alas, there are many individuals who have NOT learned these lessons and we have to sleep in the same box with them.  I mean, how immature can some puppies be.  Sniff  Sniff.  I guess that makes me one of the irritable puppies.  LOL

I think if you, me, or us, can see life through this lens, or a lens that you prefer, we are practicing forgiveness.  None of those puppies is to blame for what they don’t know.  Not one of those puppies is trying to ruin the day of another puppy.  Each of those puppies is trying to survive the best they know with the information they have whether that be as an alpha dog, a runt or a shy dog.  Each of those puppies will react their own way to being sick or in pain or teased or shunned.  The alpha dog might get a little nastier.  The runt might just become very fearful and the shy dog might just go hide all day long.  But rest assured, every single puppy has a challenge or some sort.

I think it takes a sense of humor to think of it like this but I also think a sense of humor precedes forgiveness.  If we can laugh over some of this devastating diagnosis we are better off.  When we laugh we exercise certain muscles in our face and lungs that create more energy.  When we laugh we feel lighter too.

I think if you can create some kind of analogy or personal philosophy that puts some humor on this terrible pain, you can change the state of your suffering from darkness to feeling lighter.  Forgiveness is not to release the person who “harmed” you and I am well aware that certain people are seriously hard to forgive.  Forgiveness is to release your suffering giving you more light and laughter.  Forgiveness is to lighten your load and allow enough space in your mind where “God” can shine in.  We cannot see the light if our mind is full of darkness.  Darkness feels like blame, self hatred, anger, or hopelessness.  When we forgive ourself and love ourself every day including the bad days where pain seems to take over the light will come pouring in.  It has to.  You have created a vacuum by letting go of that darkness.

Fibromyalgia: New research

I was told by a chiropractor in Florida when he attended a conference last year he was informed about new research on fibromyalgia. (True Story)  Apparently they (I think it’s doctors in Spain) performed biopsies on the muscles of those afflicted with fibromyalgia and chronic fatigue syndrome.  Those muscle biopsies showed malfunction of the mitochondria. Apparently, mitochondria produce energy at a cellular level and our pain in the muscles, known as fibromyalgia, burns and aches as a result of this malfunction  Those are my terms, my analogy but there is science about this discovery presented online. You can google fibromyalgia and mitochondria.  One Dr. Martin Pall sells a holistic product that is supposed to deal with this mitochondria malfunction, called, Fibroboost.  I am not associated in any way with this man or his products.  There are testimonials from those who tried his product touting good results.  That’s all the information I have right now but I hope others check this out.  I ordered his product and I will post any results I notice, if any, from that supplement.  Fibromyalgia can be debilitating in more ways than just the physical pain.  The lack of prediction on a day to day basis creates anxiety about living one’s life because one never knows if this will be a good day or a bad day.  And some bad days are bearable while other days are crippling from the effects of brain fog and pain.  Image  

This was one of my good days.  I will not post any pictures of myself on a bad day.  LOL   That being said maybe I should re- think that.  I do get a bit sicker seeing only fluffy, picture perfect images everywhere.  I would rather see an overweight mother with curlers in her hair than a movie star in her glitzy gown telling all of us what to do because  somehow she has it all together. Those famous do-gooders make me anxious.  It’s a subtle anxiety that brews under the shallow surface of my mind poking me in the brain saying, how come I’m not as together as she is? or, I better lose ten pounds,  or I wonder how much that dress cost, or can I afford one? or do I look good enough?  I anxiously note to myself how she has it all.  A great husband, three wonderful, pretty, perfectly coiffed children plus she’s skinny????  I get so sick of finding out the following year they are divorced, he cheated, she’s got an eating disorder and her kids are fairly bratty due to being treated like mini divas.  Hmmm! I think,  “Maybe my fibromyalgia life is better after all.  At least I”m real and pretty much look like that chubby housewife in curlers dragging her kids around in the grocery cart only with fibromyalgia thrown into the mix.  Right?  That’s true right?”  Will somebody shout out and agree with me!  I can dream can’t I?  At least fibromyalgia can’t take my dreams away.  I’m her, I’m dancing in a white wispy gown, with flat abs and a great butt with la la music in the back ground and pristine nature shots behind me and I look freaking incredible!!!  In my dreams.    

Fibromyalgia: frustration, sharing and empathy.

Fibromyalgia is a problem of chronic pain.  There are various theories about it’s cause but few theories concerning a “cure”.  If you or someone you love, (because you won’t stay around someone with fibromyalgia very much unless you love them), has it you know this is a weird, life altering diagnosis.

On the bad days we could almost say this diagnosis feels like hell on earth.  But think about that for a minute.  I know many people who don’t have fibromyalgia. They too feel like life is hell on earth some days. Some are depressed, some are stressed, some are divorced, some are childless, some are poor, some are democrats and some are republicans.  Dirty words!  (For those of you who are pain free, happy and your life is rosy, probably this post just depresses you.  LOL. You may want to  skip it but hopefully the ending gets better).

There are those who suffer from Arthritis, Rheumatoid arthritis, gout, back pain, diabetes, neuropathy, migraines, pms, menopause, and they too are in chronic pain.

Who isn’t in some form of pain at one time or another? (Not to negate your pain in any way mind you).  Can you cure the pain of divorce?  Can you cure the pain caused by death of a loved one?  Can you cure the pain of a lousy economy and the attendant anxiety?  Does anyone stop hoping someone has “the answer”?    We hopefully take our pills and potions, we hopefully search for cures and we complain to each other hoping for comfort from our friends and lovers.

Life seems to be a somewhat painful trip for most everybody whether it’s our pain or the pain of someone close to us.  Life is not painful all the time but certainly we all see death, loss and pain. One painful lesson I share with other fibromyalgia sufferers concerns the lack of empathy for this diagnosis.  Very frustrating! For example, there are doctors who say we are faking, there are friends who think we are lazy, and others declare us hypochondriacs and secretly we wonder if they are right.

Because fibromyalgia can’t be cured some think we are making it up. Some days fibromyalgia is less evident.  Others hope that maybe we are “cured”.  We aren’t but we too hope we are!  There are hills and valleys in fibromyalgia.  If we have a pain free weekend we hope we are “cured”.  A new mineral helps for a while.  Certain exercises help for a while.  Are we “cured” at last we hope?

When the fibro returns volcanic frustrations also erupt.  Now we have to deal with not only the pain but the crushing shame we feel because the pain has returned.  Tidal waves of emotion follow.  Am I crazy? Doubt.  Am I insane? Fear.  Am I just a drama queen? Anxiety.  Am I making this up? Depression.

I have a personal theory that gets me through the day.  I believe that living life, for everyone, is equivalent to being in school…the school of hard knocks.  We learn appropriate lessons for appropriate grades and eventually we progress to college level life lessons.  When you are in high school do you receive empathy for your difficult courses from a person in college? Learning any lesson at any level isn’t easy and sometimes others find it difficult to empathize.  Some educational subjects we love and others we hate but each subject has a learning curve and learning curves can feel frustrating and difficult at times.  But we slog through the lessons hoping to graduate one day and find that perfect life.

So where is our graduation certificate for living life through the school of hard knocks?

If we think our  life lessons are only about the pain and want a “cure” for that lesson then beware of more pain.  Rather I should be understanding the learning curve for this particular lesson and maybe that’s the lesson?  Don’t look for the cure…look for the lesson.  Every single time.  Over and over and over again.  What can I learn from my frustration?  What can I learn if I do my research?  What can I learn from other’s lack of empathy?  Can I learn to empathize with others and not repeat the negative pattern I receive?  Can I now teach that empathy to others?

When I help another person, I take my attention off myself and I don’t think about the pain for that period of time.  True story.  I know there are days I could not pass on any lessons, valuable or otherwise, because I’m too “out of it”.  That’s ok too.   I try to rest that day.  I give myself some empathy that day. Then I go online and look for some other sufferer to teach me from their life lessons.  I always seem to find a nugget of wisdom if I google applicable words that relate to my “pain” that day.

Maybe that is the graduation certificate.  “Empathetic Helper”.  Maybe my, “after graduation job” is, now that I have learned one more lesson about my pain I pass that on to others.  (have you noticed how helpful and empathetic fibro sufferers are?  I have).  We share with one another and try to bring each other comfort and hope.  We exchange empathy and friendliness in that moment for just that day.  And we rest in that moment.  And the circle goes around and around and around.

Question: Did You really, I mean REALLY, take this out of this world performance in? Bird on a wire-Perla Batalla

These words are so meaningful…even after all these years Thank you Leonard Cohen. Thank you Perla Batalla for a moving rendition.



“Bird On The Wire” By Leonard Cohen

Perla Batalla, performing

Like a bird on the wire, 
like a drunk in a midnight choir 
I have tried in my way to be free. 
Like a worm on a hook, 
like a knight from some old fashioned book 
I have saved all my ribbons for thee. 
If I, if I have been unkind, 
I hope that you can just let it go by. 
If I, if I have been untrue 
I hope you know it was never to you. 
Like a baby, stillborn, 
like a beast with his horn 
I have torn everyone who reached out for me. 
But I swear by this song 
and by all that I have done wrong 
I will make it all up to thee. 
I saw a beggar leaning on…

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