This Ted video got my attention. I hope it gets yours because it’s likely you or someone you know has other invisible disorders such such as fibromyalgia, IBS, migraine, interstitial cystitis, vulvodynia and ME/CFS which affect millions and have been largely ignored by the NIH.
Despite my own struggles, I’ve been blessed with relatively mild symptoms and the ability to lead a fairly high functioning life. Long ago I lost count of all those I know, worse off than me, who have “untreatable” or invisible illnesses – friends, former clients, internet blogfriends, children and many who follow my blog
To all of you who are on similar journeys – – you are in my prayers. It’s not a cure but it’s all we’ve got . . . for now.
I imagine there are millions of you (I have a big imagination)who wait with bated breath and quickening heart beats for my posts – I shall call you Group Numero UNO. You are keenly aware (due to your breath and heart rhythm) I’ve been bloggingly absent. The rest of you (group 2, small “g”) are scratching your heads (or other parts) and wondering what I’m talking about because your lives, breath and hearts have gone on nicely without my posting.
For Numero UNO: I just have lost my mojo, my energy, my focus – not interested in writing, reading, gardening, e-mailing, blog posts started and abandoned . . . I’m giving credit to a fibromyalgia flare-up because fibromyalgia should be good for something.
For the second group: I am LOST, DEPLETED, SUFFERING and you probably don’t care . . .
On a serious note (not that I wasn’t serious before)fibromyalgia along with many other chronic conditions has a mind of it’s own and takes over at unexpected and unpropitious times. After over 20 years of living with this condition I’ve still not got the hang of it. When I feel decent I go, do, get overly involved and then crash for days, sometimes weeks (or months, but who’s counting).
To better manage what energy I have I’ve decided to do half of the ten things I currently need or want to do:
Complete half the alphabet for the on-line daily blogging alphabet posting challenge. (I’ve half a mind not to even do the challenge this year and repost what I wrote LAST year).
Brush half my teeth each day (I’ll alternate halves – half in the morning and half before bed)
Clean and dust the half of the house I can’t reach.
Stop watching the Super Bowl at half-time.
Eat half the pan of brownies I’m making (half today and half tomorrow).
That’s half of my plans so I’m not going to write the other five.
My New Motto (you can borrow it):
Live half my life with gusto, let the other half rest.
My human has been too tired to go on walks. All she wants to do is sit around and I’m getting bored keeping her distracted by petting me. She blames Fibromyalgia/chronic fatigue but I’ve long suspected that she just needs a new career that is exciting. I found the perfect cure – FOR EVERYTHING THAT AILS HER .
There’s a woman in England who (instead of moping around like my human being) got a pair of feathered fans to do a routine in a bar that was holding a cabaret night.
She said: “It was nerve-wracking but exciting . . . I felt alive. . . . Even though she’s not completely cured, her chronic fatigue only flares up every two or three months – lasting at most for a couple of days. “
She’s got big plans for the future . . . She said: “I have signed up with the alternative model agency Ugly, in London and hope to start appearing in magazines and adverts.” (I didn’t tell my human being about “Ugly” because I’m not sure what kind of magazines and adverts want “ugly” . . . )
My human thinks all this is just a ploy to get her to take me on walks. I told her if she didn’t believe me to read this:
Have you missed me? Have you EVEN noticed I’ve not been blogging? Well, I’ve been mishuga, fermisht and verklempt.
In my never-ending quest to feel better . . .
The short version: Went to an endocrinologist because I thought some of my exhaustion might be due to an adrenal problem. They took a quart of my hard-earned blood and I peed in an “orange juice container” for 24 hours to be told my adrenals are fine but I have Hashimoto’s disease.
Whaaaaaaaat??? I’ve never been to Japan and don’t even speak Japanese. Seems my immune system is eating my thyroid all up. Put me on thyroid medication and said I should have about 20% more energy. With my continual state of exhaustion 20% sounded good.
Three months later . . . maybe 10% more energy. So endo doc suggested I take Topomax, a tried and true medication, that will put my brain into deep sleep (my brain stays in REM sleep and I don’t get restorative sleep – that’s the main reason I’m so exhausted all the time). I researched it and checked it out with my fibro doctor who said it was worth a try.
NOT ONLY DIDN’T THE MEDICATION PUT ME INTO deep sleep it didn’t even put me into REM sleep!!!!! I was up for 3 nights and 3 days. Couldn’t even nap. My brain thought it was a stimulant. I couldn’t think straight, walk straight or talk straight. I’m just barely beginning to feel normally exhausted.
I told my fibro doc what happened on the medication. She gave me a new diagnosis:WEIRD.
As my fibromyalgia/chronic fatigue symptoms go unabated I have asked my doctor Patricia Ahearn repeatedly to get her lobotomy certificate. I’m sure there is week-end or on-line training for doctors. She’s a very caring person so it’s been hard to understand why she’s been stalling.
Maybe she’s been waiting for this new research?!!!!!!
“An almost complete version of a tiny human brain has been grown in a U.S. lab in a move that could bring major strides to the treatment of neurological diseases, a scientist says. Rene Anand, a professor at Ohio State University, has grown in a dish a brain equal in maturity to that of a five-week-old fetus, his university reported.”
“It not only looks like the developing brain, its diverse cell types express nearly all genes like a brain,” Anand said.”
“Around the size of a pea, the brain in a lab dish includes multiple cell types, all major regions of the brain and a spinal cord, but lacks a vascular system, the university said.”
“It was grown from human skin cells and is claimed to be the most complete brain of its type grown yet.”
With the new 3D printing technology I might be able to make me new brain, each morning, right at home.
I look normal, I act normal(relatively normal). However, I feel exhausted much of the time, my body aches from head to toe and my brain sometimes has trouble remembering or concentrating. Please don’t tell me to exercise more, eat better, try acupuncture or go to a new doctor. After 20 years I’ve tried just about everything there is to try that I can afford, swallow or legally do.
I don’t even care anymore what you call it: Fibromyalgia, Chronic Fatigue, malingering . . . it’s just tiring being tired much of the time. I push through it otherwise I’d have no life. But the price for pushing can be days of crashing so I pick and choose my commitments.
I prefer not to talk about it, write about it, dwell on it. It is what it is and I’m blessed that it’s not life threatening. But today is World Awareness Day for neuro-immune illnesses of ME/Chronic Fatigue (CFS), Fibromyalgia (FM), Lyme disease, and Multiple Chemical Sensitivity (MCS). It’s an opportunity to raise public awareness of these conditions that impact millions all over the world.
It’s a good bet that you or someone you know has one of these invisible conditions . . . if you didn’t before, you do now.
It’s been a rough several months. I suspect that in order to flee all the snow in the Eastern United States my “Fibro-Fiend” needed a bit of sunshine so dropped in for a visit. It’s been sunny and warm here and she just won’t leave.
She’s a demanding house-guest and almost all my energy is spent focusing on her needs. She doesn’t have a very good sense of humor either and I have to find ways to amuse myself. I’ve not had the energy to participate in Year of the Spark so I revisited some old, EASY Carla Sonheim exercises looking for some spark.
When I was a shrinkling listening was not automatic. Thirty years later I’m on auto-pilot listening simultaneously on multiple levels: What clients are saying, what they are not saying, how they are experiencing it, what their body is saying, how what I’m hearing is connected to feelings in the last few days, years, lifetimes; Listening for patterns, connections, disconnections . . .
Logic would have me think it was more stressful being a psychotherapist in the beginning of my career. So why, after just sitting and listening, I’m a zombie for days afterwards?
This explanation about chronic stress might explain some of it (I agree with everything, except for the conclusion):
‘”A young lady confidently walked around the room with a raised glass of water while leading a seminar and explaining stress management to her audience. Everyone knew she was going to ask the ultimate question, ‘Half empty or half full?’ She fooled them all. “How heavy is this glass of water?” she inquired with a smile. Answers called out ranged from 8 oz. To 20 oz.”
“She replied, “The absolute weight doesn’t matter. It depends on how long I hold it. If I hold it for a minute, that’s not a problem. If I hold it for an hour, I’ll have an ache in my right arm.”
“If I hold it for a day, you’ll have to call an ambulance. In each case it’s the same weight, but the longer I hold it, the heavier it becomes.”‘
“She continued, “and that’s the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won’t be able to carry on.”‘
“‘As with the glass of water, you have to put it down for a while and rest before holding it again. When we’re refreshed, we can carry on with the burden – holding stress longer and better each time practiced. So, as early in the evening as you can, put all your burdens down. Don’t carry them through the evening and into the night. Pick them up again tomorrow if you must.”
P.S. I still blame much of my zombiehood on the fibromyalgia. After all what else is fibro good for – it never listens.
I generally try to restrain my public moaning and groaning.These last few weeks, give or take a month, going on for a year or more I’ve been struggling with fibromyalgia fatigue and pain. This clip sums it up.
If you have a brain in your head WATCH this! Important information for everyone, whether or not you or anyone you know has a chronic pain condition (including – MCS, irritable Bowell, TMJ, Interstitial Cystitis, Back pain etc.). It’s well worth your time.
Although the focus is fibromyalgia Sean Mackey, M.D., Ph.D explains how the emotions, the workings of the brain impact our physical well-being.
His presentation is 51 minutes long and then takes questions and answers.
In 1996 I contracted an invisible “illness”. I began experiencing excruciating burning pain in my hands, arms and legs followed by gastrointestinal, cardiological, dermatological, emotional “issues”. The worst part is I was also in peri-menopause and experiencing mood swings, wildly, uncontrollably ric-o-shaying between happy, content to annoyed and upset.
In1996 fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: Unexplainable, unverifiable and psychosomatic. It was a Hysterical Middle Aged Woman’s Syndrome, as doctor after doctor told me – based on test, after expensive test coming back negative – that nothing was wrong with me and to go home and “Get a life”.
Forever imprinted in my memory is the chief of neurology at one of the major medical centers in Los Angeles (the doctor and medical center shall remain nameless because this is a true story) looked at me knowingly, like we shared a secret “You’re a psychotherapist. You know about psychological issues” – he leaned forward, compassionately touching me on the knee and winked. “Go home, live a good life and take up a hobby like kick-boxing.” The only reason I winked back was to blink away the tears that were threatening to disrupt the façade that I wasn’t a hysterical middle-aged woman.
I looked for anyone –gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors – to put a name to what I had, to give what was invisible to everyone but myself a label other than HYPOCHONDRIAC. I looked fine, acted fine, all tests were negative. All I took away from the 100’s of doctor’s visits was a stack of psychiatrist’s cards doctors handed to me on the way out of their office.
After years of escalating pain, exhaustion, depression, countless doctors and tests I really did qualify on all counts as a hysterical middle-aged woman .
Well over a decade after my initial symptoms fibromyalgia was recognized by the medical community as “real” and research has since shown that it’s a central nervous system, brain processing disorder.
I’m no longer middle-aged or hysterical. But the doctors were right – it was, it is, all in my head.
Refined sugar is my drug of choice. Lately I’ve been on a binge. When my energy is flagging sugar is my go-to drug. It’s also my choice when I’m bored . . .in pain . . . when I’m sad, happy . . . when it’s raining . . . snowing (anywhere in the world) . . . cloudy, clear, night or day . . .
O’ lovely sugar
sweetest seductress ever
you never grow stale
O’ sugar of mine
as pure as the falling snow
cooling my senses
O’ sugar my love
with pangs in my head & heart
you are a goner
I’ve not been feeling very well lately and no longer know which comes first – sugar or my symptoms. Ultimately it makes no matter for I know that sugar is not good for me.For the next month I’m going to ATTEMPTto keep refined sugar and it’s “carrier” white flour at least 10 feet from my lips. (I was going to say mouth but I need those extra inches for safety.)
I’ve tried abstaining from eating refined sugar before . . . . wish me strength of character and will (luck isn’t going to cut it).
At the risk of jinxing myselfI’ve been puzzling over why I do not suffer as much from fibromyalgia than the women (and men) I know who are in more pain, have more co-morbid conditions and debilitating symptoms than I do.
And because they are, for the most part, held hostage by their medical conditions they are unable to continue to work in their professions and live a “relatively normal” life. I’m not sure my life is “normal”. I’m often stopped in my tracks by exhaustion, distracted by pain but I’ve been blessed by being able to continue to work in a profession that gives my life purpose and meaning.
What’s prompted all my questioning and thinking?
I’ve been reading books written by Viktor Frankl an Austrian neurologist and psychiatrist who was a Holocaust survivor. In his book Mans Search for Meaning he writes about his incarceration in nazi death camps where he observed that those who did not believe their existence had meaning succumbed in greater numbers from starvation and disease than those who held the belief that their life had meaning.
Their purpose didn’t involve grand schemes of saving the world, curing people or groundbreaking discoveries. Purpose ranged from finishing a manuscript of a book begun before incarceration, staying alive for a family member or simply believing God had an unknown reason for them to live.
So? What part does purpose and meaning play in our lives? in your life? Does having purpose and meaning help reduce emotional or physical suffering? I don’t pretend to have the answer, just the question.
Here’s Dr Frankl in an interview about finding meaning in difficult times. (He talks about his experience in the concentration camps toward the end of the interview.)
“. . .the man on the street knows that meaning may not only be found in creating a work and doing a deed, not only in encountering someone and experiencing something, but also, if need be, in the way in which he stands up to suffering.” Viktor Frankl
Every once in a while I have the urge to talk about ME. “Uh oh”, you’re thinking, here she goes again . . .
Today I’m too pooped to do anything other than focus on me. It’s the only subject I’m an expert on and don’t have to “think”.
When I stopped taking a dopamine enhancing drugearly last year I crashed. The exhaustion that accompanies, or perhaps drives, Fibromyalgia/Chronic Fatigue hit me like a tidal wave. (Fibromyalgia and Chronic Fatigue Syndrome* seem to be over-lapping conditions for many people. The verdict is out whether it is one and the same or different maladies).
It’s so hard to explain what it is like to feel exhausted all the time. I’m not sleepy, not tired, not fatigued. It’s an exhaustion, a heaviness that seeps up from the bone marrow. It saps me, not only of physical energy but of mental energy too. I’ve been staring at the TV all day, sitting like a lump, no energy to get up and even do things I enjoy.
I often explain the fatigue as like running through quick-sand that is up to my eyebrows. I can push through it – only for a while . . .
The exhaustion is invisible. The loss of memory is often public. Yesterday I called 3 different clients the wrong name. My brain is in gear but the gears don’t mesh.
I’m blessed that I have a profession where I’m in control of the schedule. Many people are not that fortunate and have to go on disability, IF they can get it or it’s available. Men, I believe, often have it harder. When they have to give up a job, retire the stigma is harsher for not working, not being “productive”. And because fibromyalgia/chronic fatigue are disproportionately a “woman’s disease” men often do not get appropriate treatment or are labeled as malingering.
Estimates range from 2% to 4% of the populationhas Fibromyalgia/Chronic Fatigue. Chances are you or someone you know is living with the symptoms right now.
*Chronic fatigue syndrome has eight official symptoms, plus the central symptom that gives the condition its name:
Loss of memory or concentration
Enlarged lymph nodes in your neck or armpits
Unexplained muscle pain
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Extreme exhaustion lasting more than 24 hours after physical or mental exercise
Please read it to get another perspective on invisible illness.
Carolyn’s intro is perfect so I’m stealing it! (Don’t tell Carolyn! . . . ). Here it is:
“Next week is Invisible Chronic Illness Awareness Week and this year, the 2012 campaign organizers have provided a 30 Things template for bloggers like me. Most of us look and sound pretty much the way we did before being diagnosed with a chronic and progressive illness which may not be at all visibly obvious to the outside world. This can then make it challenging for those around us to ‘get it’ when we are struggling with debilitating symptoms. So with the hope of helping to expand public awareness into next week and beyond, here goes:”
My choice: A gossamer gown
or a horse hair robe
1. The illness I live with is: fibromyalgia and chronic heart arrhythmias. Yup plural. The meds I am on for atrial fib caused another problem with my AV node which caused a problem with my pacemaker which caused .. .
2. I was diagnosed with it in the year: Fibro – 1996, Heart – 2000ish
3. But I had symptoms since: Looking back I had fibro symptoms as a child. My heart arrhythmia’s started in the 1970’s. I believe my heart problems are fibro related as fibromyalgia is a central nervous system disorder.
4. The biggest adjustment I’ve had to make is: remembering that my body is no longer 30 years old and not be upset with myself for not doing MORE, more, more.
5. Most people assume: I’m fine. When I’m in public I look fine, I act fine. And that’s fine with me.
6. The hardest part about mornings are: Waking up exhausted and wanting/needing to go back to bed even if I’ve slept 9 hours.
7. My favorite medical TV show is: I don’t watch medical TV shows or anything that has death, dying, famine, pestilence, flood, suspense or mayhem. My central nervous system is always on red-alert and anything that is even a tiny bit tense throws it waaaaaaaaay over the top. I watch a lot of HGTV!
8. A gadget I couldn’t live without is: Romba. I could watch her vacuum her little robot wheels off for hours! If I could afford it I would have a robot clean counters, wash windows and COOK. The best money I ever spent that I thought I shouldn’t spend. (I did have a 20% off coupon . . .)
9. The hardest part about nights are:Hoping tomorrow I’ll have energy but knowing I will wake up exhausted.
10. Each day I take __ pills, 8 or 9 but who’s counting . . . two are for fibro the rest are heart meds.
11. Regarding alternative treatments I: have tried most with no change. I don’t do placebo very well either.
12. If I had to choose between an invisible illness or visible I would choose: NEITHER! I do think that in many ways visible illness or injury is looked at as legitimate and invisible illness or injury is suspicious – particularly when it’s chronic. Once I was on crutches for leg surgery. I got so much care and sympathy that I told everyone I was going to keep the crutches and use them when I had fibromyalgia flare ups.
13. Regarding working and career:I have had to limit the number of people I see on a daily basis. This past year I’ve had to limit the number of days in the office. If I see too many people it takes me days to get any energy back. The older I get the less resilient I seem to be.
14. People would be surprised to know: At home I sit and stare a lot. I’m not always cheery and energetic. When I’m at work I truly am delighted to see clients and I am able to keep my focus for and on them and push everything else into the background. When I notice pain, fatigue or irregular heart beats during a session then I know I’m not doing well at all.
15. The hardest thing to accept about my new reality has been: Not having the kind of energy I used to have, want to have and how unproductive I feel. The hardest thing to DO is pace myself. When I’m feeling ok I tend to do too much and then I create a “fibro flare”.
16. Something I never thought I could do with my illness that I did was: Teach 4 day intensive for the Academy for Guided Imagery. The teaching is from 9 am to 5 pm and then the faculty debrief etc until 6. I take a nap during lunch. The incredibly wonderful students that take the training keep me enthused and stimulated. After the 4 days I crash for days. It’s worth it. I love teaching.
17. The commercials about my illness:I’m glad that the words Fibromyalgia and Atrial Fibrillation are becoming known. But all the commercials about medication in general drive me nuttier than I already am. They make it sound like all you do is take a pill and the world is wonderful. (The list of side effects makes me smile – I’ve had most of them)
18. Something I really miss doing since I was diagnosed is: Spontaneity. I never know how I’m going to feel.
19. It was really hard to have to give up: My previous way of living. After all these many years I still have a difficult time pacing myself.
20. A new hobby I have taken up since my diagnosis is: Taking naps.
21. If I could have one day of feeling normal again I would: I’ve come to realize that what I’m feeling and how I’m living IS my new normal. I can no longer remember how I felt before my fibro and heart problems really flared.
22. My illness has taught me:We all share invisible hurts, scars, pains and sorrows. Invisible emotional hurts and pains are much more difficult than the physical. In a weird way I am blessed.
23. Want to know a secret? One thing people say that gets under my skin is:Give me advice on what I can do, should try to be “cured” or feel better. After 16 years I’ve read books, articles, blogs, research and have pretty much tried everything known to man (at this point in time). I’m sick and tired of trying “miracle” cures and going to health care appointments. I’ve tried acupuncture, herbs, vitamins, yoga, body work, imagery, hypnosis, been to over 30 different kinds of doctors etc. Enough! The only thing I haven’t tried is being stung by a bee 3 times a day. Ouch! (I saw a woman at a fibro conference gave a demonstration) Thank goodness I’m allergic to bee stings . . . or I would have tried that . . .
24. But I love it when people: Forgive me for not calling back, forgetting their birthdays, understanding how difficult it is for me to make long-term commitments or plans since I never know how I will feel.
25. My favorite motto, scripture, quote that gets me through tough times is: ” This too shall pass”. My Mother always said that. She was right. Everything passes. This life is just a small blip in eternity.
26. When someone is diagnosed I’d like to tell them:Your life won’t stop even if your health has. Do what you can when you can, if you can.
27. Something that has surprised me about living with an illness is:How exhausting and isolating it is.
28. The nicest thing someone did for me when I wasn’t feeling well was: To be honest, I can’t think of anything. People do nice things for me all the time that have nothing to do with how I feel. Nice!
29. I’m involved with Invisible Illness Week because: I believe that it is the only way to make invisible illness VISIBLE is to share and talk about it.
30. The fact that you read this list makes me feel: Hopeful. Maybe my experiences can help others not feel as puny & crazy as I thought I was when I first developed debilitating symptoms.
Thanks Carolyn! At least I didn’t steal your answers too!
I snapped at my husband today. I felt justified to boot.
Why would a therapist, who KNOWS relationship dynamics, why would a therapist who counsels others on how to conduct themselves to make their life better, why would a therapist respond in such an unhealthy way?
Why would a woman with a husband and friends who love her and dog who gives her licks upon request, why would a woman who believes that we are all connected and God is in all feel alone?
Hate to admit it, but I keep getting reminded that I’m human.
After the stress, excitement, tension of being “up & on” all day yesterday I’ve crashed.
My body’s aching, my face, feet, legs and arms are burning, I’m exhausted and yes, I feel alone with it all.
Ironically, one of the pictures I talked about yesterday was the collage I did depicting my exhaustion and the part of me who yells to pull myself together, get up and get going, the part of me that just sits, frozen in place, and the exhausted part that just lays there listening.
I also talked about the Buddhist saying –
Pain is inevitable.
Suffering is optional.
Today I told that yelling me to shut up and leave us alone.
After my Therapeutic Creative Expression presentation everyone had their own mask to decorate. The front represented a “Celebration of Me”. On the inside of their mask words that described themselves – qualities, attributes, accomplishments – not dictated by their illness or limitations were written.
When I can figure out how to add narration to the slide-show I presented I’ll post it on-line. In the meantime here’s a very small sample of the deeeeelicious treats, people and masks.
Please sign up! Talk to others who have been on this journey with a life altering medical condition for years. Share your own experiences to help others. WE ARE ALL CONNECTED! CONNECT with FANN!
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“Fibromyalgia is a chronic pain disorder that affects individuals physically, mentally, emotionally, socially and financially. For those with severe symptoms, the disorder can be extremely debilitating and interfere with basic daily activities, leading to high rates of disability.
Between 2 to 4% of the population—as many 10 million people in the United States—suffer from fibromyalgia. (American College of Rheumatology). While predominately seen in women, the disorder also occurs in men and children, and is seen in all ethnic groups.
Fibromyalgia (FM) is characterized by widespread pain, fatigue, sleep disturbances and cognitive difficulties as well as a number of overlapping conditions.”
For more information on current research and opportunities to participate and important information on fibromyalgia and pain disorders take a look:
For those of you new to my blog (er, Max’s blog) I have an “affliction” due to alien possession. It’s called fibromyalgia. Fibromyalgia is a misnomer dating back to ancient times when the medical establishment liked to name things with Greek roots because it sounds more scientific. The rest of you who know my whole weary tale can skip down to the red print.
My main symptoms of this central nervous system disorder are depression, allodynia a good Greek name for whole body pain, mental fog (where are the Greeks when they are really needed – FOG is a soft, floaty description for mental muddle, mental muck) and exhaustion. There are many other symptom since the central nervous system impacts every system. I’ve been one of the lucky ones where the aliens decided to lay heavy on the depression and exhaustion and go light on the fog and pain.
I’ve been blessed that my symptoms have been helped for several years – not eliminated – through the miracles of modern meds. That was until I had to go off (that’s an interesting image) my miracle drug Mirapex because one of the side effects was narcolepsy (another Greek name). Unfortunately, I was awake enough of the time to indulge in another side effect – compulsivity. I ate obsessively, compulsively like an addict. Again I was blessed that I stopped the drug before it led to compulsive gambling and sex – I kid you not!
Which brings me to the present. The good news is I no longer fall asleep at stop lights or brushing my teeth.The bad news is I’m EXHAUSTED. pooped-out-of-my-mind. In the morning I wake up exhausted after sleeping 10 hours. So after a few hours I take a 2 hour nap. It’s almost impossible to describe being exhausted without doing anything that is exhausting. I’m NOT TIRED, mind you. Exhausted.
I’ve stopped exercising as the thought of it exhausts me more. I’ve reverted to self medicating myself with anything that contains refined sugar and/or white flour searching for an energy pick me up. I stare out into space thinking of all the things I should be doing, need & want to be doing and get more exhausted thinking about how I will feel exhausted doing them.
My in-basket has now grown to over 300 e-mails not attended to. I forget to call back clients who are forgiving and wonderful as always. I avoid calling friends, not wanting to recount the exhausting litany of reasons why I’ve not called nor responded to them. I don’t walk Max who patiently waits for permission to walk himself.
I woke up this morning, exhausted as usual, and said to myself. “Judy, this now calls for desperate measures.”
However, I’m too exhausted after writing all this so I’ll tell you what my desperate measures are tomorrow. I’m going to lay down now and get in another nap before it’s time for bed.
What an incredibly wonderful world this is to be missed by people I’ve never met in person yet feel like family. Wendy, Laurie thank you so much for your concern
I’ve been off for a while – off-line, off mentally, physically and dare I say emotionally. (It’s a bit blasphemous in the therapeutic community for a therapist to be off emotionally and admit it SO PLEASE don’t tell anyone. I DO have a reputation to uphold)
Not sure which is the chicken, which is the egg. All this heart tweaking, testing, stopping miracle Mirapex (click for the saga) has set off my fibro “stuff” and/or the fibro stuff caused the heart stuff which set off the fibro stuff.
The upshot: My body feels like it’s been hit with a train, my brain isn’t remembering, and my affect is rather flat – that’s therapist speak for “depressed”. I’m blessed that I have enough energy to go to work, and focus while I’m there. I find other people’s difficulties and issues far more interesting than my own.
This is the first time I’ve used the new word press format – and the WordPressies already gave this post a title: “Title (optional)” The WordPressie People are really smart. Most things in life are indeed optional – even health.
Forrest: “That day, for no particular reason, I decided to go for a little run. So I ran to the end of the road. And when I got there, I thought maybe I’d run to the end of town. And when I got there, I thought maybe I’d just run across Greenbow County. And I figured, since I run this far, maybe I’d just run across the great state of Alabama. And that’s what I did. I ran clear across Alabama.
For no particular reason I just kept on going. I ran clear to the ocean. And when I got there, I figured, since I’d gone this far, I might as well turn around, just keep on going. When I got to another ocean, I figured, since I’d gone this far, I might as well just turn back, keep right on going”.
At the end of every year I find myself at another ocean, re-viewing my own “run” . . .
2011 has been an eventful year — Tallulah was falsely blamed for my light-headedness, chest pain. That went on for about 3 months. I was visited by “mysterious visitors” that kept me up all night coughing. That went on for about 6 months. (recurs periodically but still don’t know why). Couldn’t run without pain for about 6 months. (Finally gave in and had a cortisone shot).
I worked 7 days a week. Every week I figured since I already had worked 5 I might as well work two more.
Consequently I got fibro fogged and messed up my appointments – double booking or forgetting to write down the right time or writing the right time on the wrong day …
Those are the things that went wrong. What went right? I’m sure there was a lot – I just don’t remember where I wrote them down.
Not quite sure what I’m suppose to learn from 2011 . . . yet. With years of hindsight I figured out that having fibromyalgia gives me greater compassion; Having heart problems reminds me to wake up everyday with a loving heart; My study of Baha’i removed my fears and gave me faith and a bit of wisdom.
I can hear my friends saying it was time to apply the compassion, love and wisdom to myself and stop running.
Hey, Forrest, pass me the box of chocolates . . .
P.S. In case you didn’t notice, I have been lying on the beach without a computer for the last several days!
I Keep trying to change to a healthier lifestyle, better nutrition, consistent exercise, reduced stress. TRYING is the operant word. I succeed for bits and burst and then fall back into old unhealthy patterns.
Despite the fact I’ve been back and forth to cardiologists and my internist over 8 times in the last 3 weeks I continue NOT losing the 20 -30 pounds that would help my conditions.
Now, I’m not here to diminish the debilitation and pain that comes with any chronic condition I’ve just been wondering why cancer patients I know are so much more motivated to change their life style than I am with fibro and cardiac problems.
The conclusion I’ve come to FOR MYSELF is that I’m not scared enough (the biggest motivator for me, and I suspect for many others, is fear.)
Logical, NO. Emotional, YES:
Cancer is scary. Many years ago I had a suspicious tumor in my leg muscle and as SOON as I found out I scheduled surgery to get it OUT. I view cancer as an invader to be vanquished, shown I’m more powerful. It doesn’t belong and when something doesn’t belong in my body it’s frightening.
My heart isn’t an invader, it belongs. It might be defective but I don’t want to vanquish it. How do I treatsomething that gives me life? I nurture it, console it and Feed it.
Fibro resides in a mysterious place called my central nervous system. Not even the medical establishment really knows what is happening. There’s nothing to vanquish. It’s invisible. Fighting the symptoms seems almost futile. I’m not SCARED of “it”. It’s my brain. I AM MY BRAIN.
I have HOPE that something EXTERNAL – medication, a pacemaker, physical therapy, acupuncture, surgery, a miracle etc. – will provide the cure so I abdicate my responsibility to take charge of my own life and health.
I WANT someone, something else to take care of me, heal me, comfort me, cure me . . . The idea that I am responsible is at best overwhelming and at worst tiring and maddening.
However, while I wait, want and hope I am more and more at risk and more and more debilitated.
What prompted my thoughts is an excellent post on Carolyn Thomas’ Heart Sisters Blog. You can see the entire article at:
Here’s an excerpt: “Is there any group of doctors who have succeeded in getting their patients to stop whatever they’re doing, and to suddenly focus every ounce of energy on regaining their health?”
Yes, he (Dr. Fogoros) answers: it’s the oncologists.
Patients who are told they have cancer, he explains, often put everything in life on hold and steel themselves to do whatever is necessary (whether surgery, radiation, or chemotherapy, often painful, and often lasting for months or years) to attempt a cure.
This is the same attitude that people ought to adopt when told they are at high risk for cardiovascular disease, he warns:
“After all, being told you are at high risk for a cardiac event is not all that much different than being told you have cancer. Heart disease is no less fatal, and the outcome no less dependent on your attitude and your active participation in doing what’s necessary.”
Dr. Fogoros believes that the high-risk patients who are most successful are the ones who adopt a “change it all now” attitude – the ones who accept that a complete change in lifestyle is needed. They’ll stop smoking, adopt an exercise program, and change their diet all at once. And they do it by making risk factor modification the central organizing theme of their lives.
Here is a quiz on cardiac risk factors tailored especially for women. True or False?
For each “true” statement, give yourself the number of points indicated.
My parents or siblings have had a premature (before age 55 for men, or age 65 for women) heart attack, stroke, bypass surgery or angioplasty. (2 points)
I am age 55 or older, or post-menopausal. (1 point)
I am a smoker. (2 points)
I do not routinely exercise for at least 30 minutes, 4 times per week. (1 point)
My blood pressure is over 120/80. (1 point) I have diabetes or take medication for my blood sugar (2 points)
My HDL cholesterol is less than 50 mg/dl, or my total cholesterol is greater than 240 mg/dl, or I don’t know my cholesterol levels (1 point)
I am 20 pounds or more overweight (1 point)
I am taking birth control pills (nonsmokers add 1 point, smokers add 2 points)
My blood CRP (C-Reactive Protein) level is elevated (1 point)
I have metabolic syndrome. (2 points) (Metabolic syndrome is any three of the following: high blood sugar, high triglycerides, low HDL cholesterol, hypertension, and central obesity (“fat belly.”)
Add up your points. If your score is 5 or higher, your risk of developing heart disease is high. If your score is 2 – 4, your risk is moderate. If your score is 0 – 1, your risk is low.
If your risk is high, you need see a doctor soon for a cardiac evaluation, and for help with aggressive risk modification. If your risk is moderate, you should see a doctor for a complete risk assessment and for guidance in risk modification. Even if your risk is low, you need to deal with any modifiable risk factors you have (those mentioned in statements 3 – 11.)
Mosca L, Banka CL, Benjamin EJ, et al. Evidence-based guidelines for cardiovascular disease prevention in women: 2007 update. Circulation. 2007 Mar 20;115(11):1481-501. Epub 2007 Feb 19.
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.
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.
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:
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
Beets, beans & legumes
Supplements believed to help raise dopamine levels include:
L-Theanine (supplement form of amino acid unique to black and green tea)
Omega-3 fatty acids, from fish oil or flax seed oil
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.”
GeeeeeeZ, you’d think my Human would learn: She taught the 4-day Interactive Imagery Intensive; Came home Sunday evening; Monday, Got up at 5 am and walked (WITHOUT ME!) for 45 minutes then saw 4 clients; She did the same thing all over again today – got up at 5 am, walked WITHOUT ME! for 45 minutes then saw 6 clients; She came home and insisted we take a nap. I humored her, thinking we could walk together later. WRONG! She says she’s still too tired . . .
I pointed out to her this post she wrote LAST YEAR:
My Horoscope for today: Aquarius, By Rick Levine “You may be overly confident now in your abilities to make everything work out just fine. But your unrealistic optimism can be exhausting, especially if you have to deliver all the goods that you previously promised. Be as objective as possible today when making plans for your future, for working too hard can take all the fun out of the rest of the year.”
I just returned from teaching a 4 day intensive Interactive Guided Imagery Workshop for The Academy for Guided Imagery (AGI) http://www.academyforguidedimagery.com/ . 9 am to 6 pm every day. I had a great time. I love to teach and meeting new people that I learn from. So I returned back home on a high thinking I was back in the same great form as when I first started teaching for AGI in the late 1980′s. I hit the ground running seeing clients the first two days back.
Delusional! When will I ever learn that I have fibromyalgia and have to pace myself . . .Today I crashed.. .sat around in a hazy exhausted fog. No matter that I’ve had fibro since 1996. No matter how old I am. No matter my physical condition or situation. Inside, I experience “me” as young and vital
After all these many years why do I continue to be surprised when my body doesn’t respond the way I perceive myself?
Any thoughts? (Is that just an Aquarian trait?)
Me, looking askance
2011 – Any thoughts? (Is that just a STOOOOOOOPED trait?)
After I was diagnosed with fibomyalgia in 1996 I “treated” myself with therapeutic creative expression in a form of visual journaling. Years later I showed them in a PowerPoint presentation at the National Fibromyalgia Awareness Day in 2009. It was the first time I shared these pictures and I felt a bit exposed and vulnerable.
When I made this collage I was having fun tearing out magazine pictures, concentrating on colors and shapes. The male body underneath the large face was pasted there because I thought it humorous to have a giant female head on a muscular, agile male body.
Until that presentation I had never looked at my pictures from a distance. When I saw this collage projected larger than life onto a screen I was stunned. It takes a LOT to anger me. While anger was outside my conscious awareness my unconscious was furious.
I also realized that the jumping body underneath the female face represents the fibro – strong, active. Above the neck all I can do is be still with fury.
(I’m still not sure what the yellow paper over the nose is about).
The large head sees but doesn’t speak. The small head speaks but doesn’t see.
It still unnerves me a bit.
National Fibromyalgia Day is May 12th and events are going on around the United States.
I was asked to give the keynote address for the 2009 Fibromyalgia Awareness Day at Cal State Fullerton. I’ve given it many times since. Here’s an abbreviated version:
I became symptomatic in 1996 when Fibromyalgia was considered a Hysterical Middle Aged Woman’s SYNDROME. By the time I was diagnosed I met that criteria. Doctor after doctor with a wink and a knowing pat on my shoulder (at least that was what I perceived) let me know nothing was PHYSICALLY wrong with me.
I decided I was inhabited by Aliens who were using me as a Southern California time-share. It gave me comfort to find the cause.
Years passed, the Aliens stayed and the pain turned into depression, into exhaustion, into despair. My body betrayed me, my mind fogged, the medical community abandoned me, family & friends were powerless.
I was both sustained and drained by my psychotherapy practice.
Raised as a non-practicing Jew, whose father and mother were professed agnostics. I now had no faith – in my body, mind or a God. I had nothing to hold onto for comfort much less hope.
I didn’t matter. Now THAT’S a depressing thought which I suspected was part of the Alien’s plot to render me completely helpless & hopeless in order to take over my time-share real estate.
I didn’t matter. There was no purpose to my life. I started making pictures: Ugly pictures, scribbling pictures, angry pictures. I would paint and paste, scribble and scrawl without any conscious thought.
Weeks later, months later, in some cases years later I would put words and meanings to my unconscious expression. That body of work turned out to be a visual document of my journey with the aliens.
I realized I had been mourning. Grieving my loss of identity, a loss of purpose. I mourned for that energetic person: The one who worked a 60 hour week and went to school for two Master’s degrees; who jogged 10 miles in 100 degree heat; who saw 8 clients in a row and remembered the details of their lives a year later…
She was dead. I was angry. Now I had to check my appointment book to remind me of my clients’ names. I could work only for 3 hours before I had to take a nap. Walking around the grocery store was exhausting. I didn’t want to talk to anyone. Holding the phone to my ear hurt my arms. Walking burned my feet. I didn’t make commitments other than work because I never knew how I would feel.
Life as I knew it was gone. What was I? Who was I? Why was I here? If there was a purpose to my having fibromyalgia it could only be an alien plot.
Without any pre-determined intent I drew a picture of my fibromyalgia: Three eyes, three-tongues and spontaneously titled it “The Soul Slayer
Until that moment I had been focused on my body and mind, never my soul.Since I’d been searching for the cause and a cure for my fibro for over a decade it was natural to now start searching for my soul.
Where does one look for a soul? I went to synagogues and churches . Found wonderful people but no soul – at least not mine. I read about the world’s religions and searched SOUL on the internet. I was sure that everyone else had a soul and it was only time that they discovered mine was missing.
Accidentally (maybe not?) I was introduced to a spiritual mentor, no more no less. He was Baha’i, a faith I was familiar with but about which I knew only some basics. He asked me to examine my life, my choices, my beliefs. I had long known from a psychological perspective about my choices and beliefs but now that my mind and body had betrayed me it all rang hollow.
He told me to repeat out loud “Say, all are created by God” and “Thy Name is my healing.” each, 95 times every day. (95 is a sacred number to the Baha’is.) There was nothing to lose. Unlike everything else I had tried as a “cure” this Rx didn’t cost me a penny and had no side effects (or so I thought).
I needed a time and place where my fogged brain would remember to repeat each of these sentences 95 times out loud.
So I started walking and repeating “Say, all are created by God” and “Thy name is my healing.” 95 times. It took my mind off the pain in my legs & hips and burning feet as I walked. I started talking to God.
beginnings of Faith – My Servant of God explained to me that ALL souls recognize each other in passing. I smiled at everyone I passed wherever I went, secretly delighted their souls knew my soul, even if I didn’t.
Exercising, smiling, talking to God!
I’m not sure I’ve mastered listening to God but suddenly at the ripe old age of 66 I discovered faith.
Walking, talking and smiling may not be the cure for fibromyalgia but they are damn good medicine (God, forgive me for swearing – it’s the only way I can underscore my point) and faith that the Aliens can’t destroy me. I’m much more than just a convenient timeshare.
My soul knows. I can live with that.
“Know thou that the soul of man is exalted above, and is independent of all infirmities of body or mind. That a sick person showeth signs of weakness is due to the hindrances that interpose themselves between his soul and his body, for the soul itself remaineth unaffected by any bodily ailments.”
“Consider the light of the lamp. Though an external object may interfere with its radiance, the light itself continueth to shine with undiminished power. In like manner, every malady afflicting the body of man is an impediment that preventeth the soul from manifesting its inherent might and power. When it leaveth the body, however, it will evince such ascendancy, and reveal such influence as no force on earth can equal. Every pure, every refined and sanctified soul will be endowed with tremendous power, and shall rejoice with exceeding gladness.”
1996: The end of life as I knew it:. I began experiencing excruciating burning pain in my hands, arms and legs. In 1996 fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: unexplainable, unverifiable and in all probability psychosomatic. Their unofficial diagnosis was Hysterical Middle Aged Woman’s Syndrome.
Doctor after doctor, told me, test after test after expensive test came back negative, that nothing was wrong with meand to go home and “Get a life”. Some looked at me knowingly, like we shared a secret “You’re a psychotherapist. You know about psychology” – Wink, Wink. The only reason I winked back was to blink away the tears that were threatening to disrupt the façade that I wasn’t a hysterical middle-aged woman.
I just wanted someone to put a name to what I had. Gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors, Yup you are reading right! They are ALL in the plural. I didn’t just see one of each. I saw private practitioners, researchers, and heads of hospital departments. I’m sure each of them wrote “HYPOCHONDRIAC” on their charts.
Over a decade later I’m no longer middle-aged or hysterical. Due to medication, I’m doing better. Yet these past two mornings I woke up feeling like a locomotive hit me and the bottoms of my feet on fire even tho the only thing they touched for 7 hours was a sheet. This morning I’m tired. Tired of being tired, However, Max took me for a walk and reminded me that whatever my diagnosis, however I’m feeling –it’s NOT all about me!
This was originally posted on August 12, 2009. Nothing has changed except for the fact fibromyalgia and chronic fatigue/ME are now recognized as “officially” an illness. The research has been slow but point to the possibility fiber is a neuro-inflammatory disorder in the brain.
Those doctors were right after all — it IS all in my head!