Tag Archives: fibromyalgia

Fibromyalgia, Chronic Fatigue, Gurus, Laughter

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Kumare, Phyllis Diller, and MeA few weeks ago, I watched the documentary, Kumare, about an American guy of Indian (Southest Asian Indian) descent who pretends to be a guru.  It’s an amazing movie and I highly recommend it.  It beautifully, and somewhat scarily, asks the question–why are we always looking for the answers outside of ourselves?

This man moves to Phoenix, and convinces a handful of people that he is really a guru.  His whole philosophy is centered around the idea that the answers to life’s questions are really inside each of us.  That we don’t need to look outside of ourselves.  The answers are within.  He says this a hundred different ways.  People are really moved by him.

I won’t spoil the end, but I promise it’s worth watching…and thinking about.

I’m sitting here, on the first day of school, not going to school, not teaching, because I’m so tired I can’t teach anymore.  It’s fibromyalgia and chronic fatigue.  But what is that?  I wonder if it’s just PTSD from my not-so-great childhood.  Maybe it’s my fillings, my thyroid, my adrenals, my toxic toenail polish?  My circadian rhythms, my longtime vegetarianism which included a lot of carbs!  Who knows?  That’s the thing.  Nobody really knows.

I’m reading a book called Healing is Possible.  It’s by an M.D. who is also an alternative practitioner.  It seems like a great book.  He has a “big six” things that might be wrong with me/us.  Then a little six too.  It’s methodical and well presented.  But there’s not a lot of scientific backup that I see.  He practices pretty close to me, about a hundred miles away.  I contacted the office to see what it would cost to go.  Well, all done and told if I go about 10 times and take a bunch of tests and buy a bunch of supplements/meds, it’ll be probably $5K out of pocket.  And still it might not work.  Is he my guru?

I emailed my Psychiatrist and she might be able to convince my Kaiser GP to give me the T3 test that might show that I need some thyroid medicine.  Several books suggest that thyroid problems are behind FMS/CFS.   This is after my failed efforts at getting answers from my GP and Endocrinologist at Kaiser, not that Kaiser’s bad, FMS/CFS is  just a mystery, and mysteries are not part of the HMO cost-cutting ways.  And I respect Kaiser in a lot of ways.  But I don’t think Kaiser is my guru.

Okay, this is  sort of an aside, and will definitely age me, but the reason I have an endocrinologist at Kaiser is because I have a nodule on my thyroid that the Kaiser peeps say is unrelated to my FMS/CFS.  The endocrinologist sticks a needle in it every couple of years to make sure it’s not malignant.  I just realized recently that this is actually … wait for it … a GOITER!  Okay, add that to the BURSITIS in my hip–I am PHYLLIS DILLER!  Oh my God.  Did anyone watch Flip Wilson back in the day?  I was, of course, an infant, but I remember her complaining, in that nasally voice, “Oh my bursitis!”  Maybe Phyllis Diller is my Guru.  Or maybe the answer is within.  Or maybe both.

http://blog.americanhistory.si.edu/.a/6a00e553a80e1088340176175baa77970c-800wi

fibro what?

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San Francisco viewed from Alameda on a cloudy day

So, I have Fibromyalgia.  I’ve known this for about four or five years.  It’s not a happy situation.  I hurt a lot and have no energy.  I quit my job because of it–well, that’s the short version.  The long version…well, let’s just say I am not the teacher, or woman, I once was, and leave it at that.  Also, California Public Schools are not what they were when I started.  Stop there.  Don’t do the long version.

I have been researching non-stop about Fibromyalgia and Chronic Fatigue recently.  All I’m left with are questions.

Is it caused by too many nerve endings as suggested by this study? 

Is it mercury poisoning from my mouth full of silver amalgam fillings as suggested by Dr. Mark Hyman in this article?

Is it subclinical, undiagnosed hypothyroidism as suggested by numerous books and articles–the work of Dr. David Brownstein and Dr. John Lowe?

Oh gosh.  Inside, I fear and maybe believe that it’s just residual crappola from my crappy childhood.  Holding all of that stuff inside for so long–despite all of my efforts in therapy, my body still hangs onto it?

I’ve looked at so many books and websites and emailed my Primary Care Physician and my Endocrinologist at Kaiser, to no avail.  All of the suggested causes and cures are too alternative for Kaiser.  And I’m not sure I want to shell out the money for a naturopath or somebody like that when I’m living on savings and not sure I have the energy to go back to full time work without a solution…but where does that leave me?  Conundrum city.  Like this picture of beautiful San Francisco from the east side of the bay…so pretty, but so many clouds.  Not clear at all.

Okay, time to do something fun.  I think I’ll watch something on t.v. about zombies and vampires.  Trouble that is not real.  Trouble that is a metaphorical reflection of our society, but still, not really real.  I have to stop obsessing about my health because I’m sure it just makes it worse.  Obsessing is the real living death, the real blood-sucker.

So here’s my protocol:  Eat real food, not a lot; exercise a little every day; meditate and pray.  Focus more on what’s right than what’s wrong.  Don’t get stuck in the false dichotomy of alternative medicine versus corporate medicine.

the gift of fibromyalgia

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0d407cd61e754af92d9f11975f2612f3

Hello!

I can’t find the source for this hilariously true cartoon–but thanks to whomever drew and posted it!  It fits with the strategies listed at the bottom–stop overthinking and nip worry in the bud.

I’m taking an online class on Fibromyalgia (you can check it out here: http://www.cfidsselfhelp.org/online-courses).  This week’s topic is handling emotions, and these are the questions asked, and my responses.  I recommend the course.

What do you do to help yourself feel better when you’re feeling blue? 

-do something active like take a walk, get out of the house, lift weights (I have a little hand weight routine I started which seems to help–not too much exercise, but enough to get my heart going and change my mood up),

-I have a book called -The Mindful Way Through Depression- and reading a bit of that usually helps me remember that my thoughts and feelings are passing and are not my identity (if I don’t let them be)  Mindfulness is really helpful.

-prayer and meditation, relaxation recordings including affirmations and visualizations

-take a nap

-talk to someone

on the other hand

-drinking and smoking and hanging out, pretending not to be sick (this is maybe not the healthiest coping mechanism, so I’m not recommending it–just saying it’s the coping mechanism that my family of origin taught me and I haven’t quite unlearned it yet).  Also, swearing and making black humored jokes and stories helps sometimes.  I guess that inside, I still have that angry teenager and sometimes she needs to come out and have her say.

What strategies help you work through the losses brought by your illness?

I think I’m just realizing the losses now.  This class is kind of making me face up to what’s really going on.

I just resigned from my teaching job of 20 years.  I don’t know what’s coming next in terms of career, finances, purpose…I try to remind myself that I taught and helped lots and lots of kids already and I have nothing to be ashamed of for being burned out. I was a great teacher for many years and have lots of wonderful memories.

I’m also just realizing how much stuff I don’t remember.  My short term memory is shot.  I wonder if I should get an alzheimer’s test.  So I’m scared about my brain fog and apparent loss of intelligence and memory.  I’m only 46 but I feel like my brain is really tired.  Probably because I’ve been thinking too much for so long.  What was I talking about?

I already knew that I had lost a lot of my hopes and dreams because of my ongoing intermittent depression.  I’ve known for a long time that my sense of self waxes and wanes and that limits how ambitious I can be or have been with teaching, writing, or any other career.   I’ve been a good “actress” for many years, making sure that I did not appear depressed when I was.

Now I realize that maybe that “acting” is what wore me out and brought me to fibromyalgia–I don’t know.  So I guess I have to give up trying to project the image of not being depressed, tired, or in pain.

I just try to let go and figure that maybe I’m meant to just rest now.  I’ve had a hard life so far (see cartoon above!) and my sadness and fatigue are telling me to just relax and chill now.  I remind myself I have no choice but to give in and rest and relax.  Worrying is just going to make me hurt physically and emotionally.  So I try not to get stuck in that worry loop.

Maybe the gift of fibro is that I get to stop worrying and working so hard.  So here’s my strategy list: rest, relax, let myself off the hook, eschew ambition, stop overthinking, nip worry in the bud.  Relax some more.