A WARNING for You and HOPE for Me

I’ve written so many times about my Fibromyalgia (ME)/Chronic Fatigue symptoms that they bore even me. However . . .  COVID-19 symptoms and Fibro/Chronic Fatigue symptoms have an eerily similar overlap.  Some people who have had COVID-19 are experiencing a slow, protracted recovery with chronic, unremitting exhaustion, body aches,  mental fog, strange dermatological sensations or rashes, gastrointestinal issues,  irregular heartbeats, depression . .  

“COVID-19 may produce a lot of ME/CFS-like cases. Will we be able to use them to understand ME/CFS?
A lot of infections can trigger chronic fatigue syndrome (ME/CFS) but in some ways SARS-CoV-2 is different in ways that reminds one of ME/CFS.  For one, it’s causing weird symptoms (loss of smell and taste, buzzing, electric, vibrating sensations, red/purple faces, purple toes, pink eye, digestive issues, nausea, dizziness, cognitive issues) that aren’t usually associated with a virus.”
“The director of infection prevention and control at Mount Sinai Hospital attributed the weird fizzing-type sensations to the immune system acting up:

Immune Responses
“Our immune cells get activated so a lot of chemicals get released throughout our body and that can present or feel like there’s some fizzing. When our immune response is acting up, people can feel different sensations… I have heard of similar experiences in the past with other illnesses”.’

My own immune system is in chronic overdrive with chronically elevated. cytokine levels.   When I first read about the COVID-19 cytokine flooding that causes organ failure with viral infections I immediately went into isolation – weeks before anyone even suggested isolation. 

THE WARNING:

“It leaves something inside you – and you never go back the way you were before.”  Everyone reading this should be worried not just of catching/surviving this viral pandemic but what might happen to their life even if they catch it and survive. Because one of the known triggers for ME/CFS is a viral illness. A huge population of ME/CFS patients got the virus Mono and never fully recovered, instead they wound up with ME/CFS.”

Charcoal on paper by judy

“Paul Garner, an infectious disease professor, and Director of the Centre for Evidence Synthesis in Global Health, and Co-ordinating Editor of the Cochrane Infectious Diseases Group, knows infections on both a personal and professional level . During his tropical infectious disease research, he came down with malaria and dengue fever, but nothing he’s encountered has compared to his bout with COVID-19.
In the British Medical Journal Garner, called post COVID-19 a: “a roller coaster of ill health, extreme emotions and utter exhaustion.”
Garner doesn’t appear to be describing post-COVID-19 illness so much as he’s describing a descent into ME/CFS. All the hallmarks are there – the post-exertional “malaise”, the delayed and mind-boggling symptom flares after little exertion, the inability to understand his limits, Garner talked about the “apparition”, a semblance of improved health that kept getting smashed as he innocently overreached.
“People who have a more protracted illness need help to understand and cope with the constantly shifting, bizarre symptoms and their unpredictable course.”

“Some of the longest-suffering Italians are finding themselves in physical and financial uncertainty, unable to shake sickness and fatigue and get back to work.”
“We have seen many cases in which people take a long, long time to recover. It’s not the sickness that lasts for 60 days, it is the convalescence. It’s a very long convalescence.” Alessandro Venturi, director of the San Matteo hospital, Pavia, Italy.”

“Another doctor noted that after all the different, initial symptoms were gone, it was the fatigue that remained. That rang bells. Early studies of the ME/CFS outbreaks came to the same conclusion: the early symptoms were often different but the fatiguing state that ultimately remained was quite consistent.”

 MY HOPE

“Because we generally, in the past, haven’t taken viruses seriously, we simply tell patients to ‘go home and rest up’. The significant fraction (which might be as high as 1-10%) of patients who do not recover normally after infection have often been marginalized and forgotten.”
This time there may simply be too many unrecovered patients for the NIH and other medical funders to ignore. 
“An unexpected element is a growing number of reports that even people with mild Covid-19 illness, who didn’t go to hospital, are experiencing long-lasting symptoms. Some people infected in February or March are still being ambushed by extreme fatigue, headaches, sudden breathlessness and problems concentrating or doing even light exercise.”
Many will probably recover, but if COVID-19 patients go the way of past Ross River virus, Coxsackie B, Giardia and SARS patients and others, a subset will remain quite ill.”

So, you ask, What’s HOPEFUL about THIS?


The Open Medicine Foundation Launches International ME/CFS COVID-19 Study
Research into Fibro (ME)/Chronic Fatigue has had few funds for  research even though there are estimated tens of millions of people in the world with that diagnosis.  
But now the entire world is focused on COVID-19. More research in a shorter period of time has been put to work on COVID-19 than ever before. With hundreds of thousands of people potentially coming down with post-infectious illnesses, there’s an opportunity to include fibro/chronic fatigue into the biggest, single medical research effort ever.”

The Open Medicine Foundation (OMF) will produce an international effort to understand how COVID-19 turns into ME/CFS. The OMF’s four-site COVID-19 study (Stanford, Harvard, Canada, Sweden) will collect body fluids, do continuous health monitoring using wearables, and collect symptom data over two years. Its genomic, metabolic, and proteomic analysis will attempt at the molecular roots of ME/CFS as it occurs.

“With the NIH otherwise occupied, Open Medicine Foundation’s COVID-19 research effort is our best chance at helping both people with ME/CFS and COVID-19 patients who are having trouble recovering. In fact, it’s the only effort going right now that seeks to directly understand and help the possibly many people, who, after surviving COVID-19, find their lives unalterably changed.”

Your Warning and My Hope:

Stay Vigiliant.  Be Safe.  Wear a Mask.  Social DIstance.  Stay Isolated if possible.  

Don’t think because you are healthy now there can not be long term consequences . . . and I’m speaking from experience.

judy

 

Click here For a list of other post COVID-19 efforts/studies that are underway and the full article

Do you have Zoom Fatigue?

On my fourth zoom meeting I kept my video off. It was strangely calming not to have others see where I was looking or looking at me.  

No matter how many times I’ve written about the level of fatigue I feel it still seems unbelievable, inconceivable that such a thing could exist.  But it’s real.  I have Post Exertional Malaise – Malaise being a fancy French word for what I experience as exhaustion.  It’s a symptom that some people experience with fibromyalgia/chronic fatigue.  Without going into the theories of what causes it – any energy expenditure – physical, mental, emotional, including intense focus – exhausts me, often for days.  

 Zoom meetings are now added to the list of what exhausts me.  Distractions, during in-person conversations which are relegated to background, swirl around in the foreground of my brain:  The small audio delay contributes to people talking over each other or weird silences, visual cues are distorted or magnified,  people fiddling with controls, some sitting too close, some too far from cameras, background noise . . . exhaust me but I thought too weird to admit to anyone.    judy

judy by Judy

Low and Behold when I read this article it was a hallelujah moment!

What’s ‘Zoom fatigue’? Here’s why video calls can be so exhausting
by Ryan W. Miller

“As social distancing remains in effect across the country during the coronavirus pandemic, people are moving from one video call to another. But there may be an unintended effect, mental health and communications experts warn: “Zoom fatigue,” or the feeling of tiredness, anxiousness or worry with yet another video call.”

Why are we all experiencing ‘Zoom fatigue’?
“From having to focus on 15 people at once in gallery view or worrying about how you appear as you speak, a number of things may cause someone to feel anxious or worried on a video call. Any of these factors require more focus and mental energy than a face-to-face meeting might”, said Vaile Wright, the American Psychological Association’s director of clinical research and quality.

“It’s this pressure to really be on and be responsive,” she said.

According to Jeremy Bailenson, the founding director of Stanford’s Virtual Human Interaction Lab, the platforms naturally put us in a position that is unnatural. A combination of having prolonged eye contact and having someone’s enlarged face extremely close to you forces certain subconscious responses in humans.

“Our brains have evolved to have a very intense reaction when you have a close face to you,” he said.

During normal, in-person conversations, “eye contact moves in a very intricate dance, and we’re very good at it,” Bailenson said. When one person looks one way, another changes where they look. A small eyebrow raise from someone at one end of the room can trigger a glance between two people on the other. But typically, we don’t stare into our colleagues’ eyes, up close on a computer screen, for an hour at a time.

So much of human communication is through these nonverbal cues that can be either lost or distorted in a video conference.

“In a way, we’re closer but we’re still communicating through this weird filter, so it gets tiring to get to the real stuff through this filter,” Degges-White said.

For video calls with old friends or virtual family reunions, the forced structure can create different challenges.

“A lot of us are thinking I want social stuff to be fun and having to be locked in front of this computer … it’s just not how I want to be spending my time,” Bailenson said.

Degges-White described it creating a structure to conversation like email. One person speaks and everyone takes their turn and waits to reply.

“That’s not normally the way we do social interactions,” she said. “It’s not that easy give and take.” Side conversations are lost. Some people who are naturally reserved may never get a word in. Others may get distracted by people in their house.

The context of this happening during the coronavirus pandemic can’t be lost either, Wright said. We’re worried about loved ones but apart from them physically.

How do you combat the ‘Zoom fatigue’?

Degges-White suggests:

  • Set ground rules before a call. ‘Can we just go audio only?'”
  • Only the person speaking has their video on. And at least for one meeting a week with his team, he says they all keep video on the entire time to have that shared sense of being together.
  • If you’re uncomfortable with how you look on camera, it’s worth spending time adjusting your settings and trying different lighting in your house, 
  • If you notice one person not very responsive or always turning their video off, check in with them one-on-one.  Some people don’t like to speak up in large groups.

Hallelujah, I’m not as weird as I thought . . . 

https://www.usatoday.com/story/news/nation/2020/04/23/zoom-fatigue-video-calls-coronavirus-can-make-us-tired-anxious/3010478001/
USA TODAY

A Happy Snacky Peggy Post

One of my long time friends (whose initials are jw but shall remain nameless) is a bit of a sugarcarboholic and green isn’t her favorite food color.  She also is in chronic pain and lacks energy.  When I found this research I wanted to share it and I know she reads this blog.

The Chemistry of Joy

Our mood, outlook and energy levels are determined to a huge extent by the chemicals serotonin, dopamine, norepinephrine and their relationship to one another.

We feel good when they are in balance. Beta endorphins also create a feeling of well-being, connectedness to others, and emotional stability. They even help us tolerate pain.

  • If levels of norepinephrine and dopamine are low, people will slow down, sleep a lot, have trouble concentrating and find it hard to motivate themselves. They can have a “sluggish” depression.
  • On the other hand, people with high levels of norepinephrine and dopamine, and possibly low levels of serotonin often feel angry, resentful and despairing. They can be critical and demanding. This would be an “agitated ” depression.
  • A third kind of depression can occur with low levels of serotonin, which results in people feeling fearful , worried and inadequate. This is an “anxious” depression.

maui-making-tea

In the Kitchen by Peggy

  • Sluggish Depression – Eating to INCREASE norepinephrine and dopamine: 
    Eat high quality proteins throughout the day, lean beef, low-fat meats and fish.
  • Agitated Depression – Eating to DECREASE norepinephrine and dopamine:
    eat the same as to increase serotonin but eat very small amounts of protein. A vegetarian diet would be good.
  • Anxious Depression – Eating to INCREASE serotonin:
    Increase carbs, eat tryptophan, which is in nuts, dairy, and meats. Eat regularly throughout the day. Get some protein, but not a large amount.

SUGAR (also alcohol) elevates beta endorphins, which may be why people have sugar cravings. This elevation only lasts a short time, because the body metabolizes it quickly. This results in a “low” that follows the sugar “high”, and you want more sugar! My friend (who shall remain nameless) can avoid this by eating complex carbs and protein.

Cholesterol helps the brain make the chemicals we need. So if you are depressed, eat some fat: Halibut, salmon, grains and nuts that have omega 3 and animal fat with omega 6 are both needed in balance.

    *    *     *

Hopefully my friend will not only read this post but start to eat better.  To make sure, I’ll suggest it for the book we are working on . . . 

“Hacking Your Way to Happiness” (It’s a work in progress, just like my friend). 

Peggy

Back in the art saddle again . . . bare-back

Haven’t drawn for months as I stopped going to art class when I fractured my ankle (couldn’t drive).  The fall semester of classes just started and I was curious to see if I’d lost all the progress I’d made.  

I was even more curious to see how my energy held up since the fractured triggered the worst of all my fibromyalgia symptoms.  My arms hurt during the 1 minute poses – probably because I was drawing furiously, holding tight to the charcoal, trying to stay in the saddle.  

During these 5 -10 minute poses I slowed myself down to a trot. 

Charcoal

Charcoal (The model isn’t as volumptuous as I drew her)

Charcoal (See? She’s quite svelte)

With this chronic condition I’m continually weighing the pain & pleasure ratio, trying to decide if the pleasure I get from activities is worth the ensuing pain.

Today, I’m sore and exhausted . . .

Who knew I’d be a “national symbol”?

I’ve written many posts about my history of fibromyalgia, just not recently.  

My “foot episode” has caused a bit of a fiber flare-up, just in time for National Fibromyalgia/ME Chronic Fatigue day on May 12th.  

Here’s my story and I’m sticking to it:

In 1995 I contracted an invisible “illness”.  Out of nowhere I experienced excruciating burning pain in my hands, arms and legs followed  by years of gastrointestinal, cardiological, dermatological and emotional symptoms.  At the onset I was also in peri-menopause and experiencing mood swings, wildly, uncontrollably ric-o-shaying swings between happy to annoyed – which I’m minimizing for public consumption.

Back then 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.  I was told nothing was wrong with me and to go home and “Get a life”.DSCN1413

Forever imprinted in my memory is an appointment with the chief of neurology at one of Los Angeles’ major medical schools (the doctor and medical center shall remain nameless because this is a true story)  He reviewed the test findings, looked at me knowingly – as if we shared a secret – and said, “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.

DSCN1414

I searched for anyone – gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors – to name to what I had, to give what was invisible to everyone but myself a label other than HYPOCHONDRIAC.  I looked fine, acted fine, and thousands of dollars of medical tests came back 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  pain, escalating exhaustion, depression, countless doctors and tests I did qualify, on all counts, as a hysterical middle-aged woman .

Well over a decade later fibromyalgia was recognized by the medical community as “real”.  Current research indicates it might be a neuro-inflammatory/auto-immune disease impacting the  central nervous system.  No one knows for certain and there is no current cure.  

I’m no longer middle-aged or hysterical.  

But the doctors were right – it is, all in my head.

 Check out Carolyn Thomas’ My Heart Sisters –“You look great!” – and other things you should never say to heart patients and lots of other great posts about invisible illness.

  • Why, when you tell someone who is ill that they look good, they’re offended?
  • Practical ways you can encourage someone who is ill.

May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).

May 12th was chosen as it is the birthday of Florence Nightingale. She was believed to have suffered from ME/CFS.

This is National Invisible Illness Awareness Week

P.S.  There are hundreds of millions of people with “Invisible Illness” in this world.  Click above to  read more information.  

National Napping Day and Me

In anticipation of National Napping Day, observed annually the day following the return of daylight saving time, I’ve taken  2 hour naps every day for a week.  National Napping Day is supposed to provide everyone with the opportunity to have a nap and catch up on the hour of sleep they lost due to the spring forward time change.  Personally, I would prefer no time change and instead of N.N.Day we had a National No-Time-Change Day.

Curious Critters Catching Zzzz’s by Peggy

Mid-afternoon naps are an integral part of many cultures, and scientifically proven to be good for you.

A needed rest is supposed to make you feel better, improve your mood, be more productive and energetic.  After my 2 hour naps I felt groggy, foggy, like muck.

Researching National Nap Day, I read that numerous studies have shown that short 10-20 minute naps are the most effective when midday fatigue hits.  Improvements in alertness, productivity and mood have all been shown to improve with this type of snooze.  

Apparently 10 – 20 minutes prevents your brain waves from going into deep sleep which is what creates the grogginess when you wake up

Now, they tell me . . .

HISTORY

William Anthony, Ph.D., a Boston University Professor and his wife, Camille Anthony, created National Napping Day in 1999 as an effort to spotlight the health benefits to catching up on quality sleep.  “We chose this particular Monday because Americans are more ‘nap-ready’ than usual after losing an hour of sleep to daylight saving time,” Anthony said.

SaveSave

SaveSave

SaveSave

O’ Woe is Me and my Rule of Halves (parenthetically speaking)

My dear Curious to the Max followers,

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).

The BACK half

The BACK half

To better manage what energy I have I’ve decided to do half of the ten things I currently need or want to do:

  1. 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).
  2. Brush half my teeth each day (I’ll alternate halves – half in the morning and half before bed)
  3. Clean and dust the half of the house I can’t reach.
  4. Stop watching the Super Bowl at half-time.
  5. 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.

"This woman is half-baked as ever . . . "

“This woman is half-baked”

 

 

 

Frankly Freddie – I found a cure for my human!!!

My Dear Human Beings and other critters,

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 .

11796206_835121679964536_7560255879812816373_n

The CURE

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” . . . )

Freddie Parker Westerfield, CDT RET

Freddie Parker Westerfield, CDT RET

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:  

Woman Bedridden With Depression And Fatigue Turns Her Life Around With Burlesque Dancing

 

 

Wired and Weird – Two for the price of one

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.

DSCN6311

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.

Bob Blobfish sez: ". . . I p"

Bob Blobfish sez: “. . . She didn’t have to get THAT diagnosis from a doctor, just ask ANYONE who knows her . . .”

“I don’t want to talk about it”

I should go out in the garden and eat worms.  I’m exhausted.  I hurt all over.   It’s hard not to have self-pity.   I TRY to limit my public and private kvetching because I know it doesn’t help . . . me or you.  There’s scientific basis for the harm we do to ourselves when we talk about trauma – any kind of trauma. 

Acrylic on Canvas, by moi

Acrylic on Canvas, by moi

 If you or anyone you know has a “story of pain” (physical, psychological, social, economic etc) read Carolyn Thomas’ My Heart Sisters excellent post.  Here’s a teeny taste:

Rehashing a traumatic story/event does some of the following:

  • puts our system on high alert
  • triggers inflammation
  • triggers the fight/flight response
  • triggers shutdown mode

On the flip side Carolyn talks about the benefits of sharing with close friends:

“Dr. Laura Cousin Klein and her team found that the credit for women’s unique stress reactions may belong to the hormone oxytocin (also known as the “lovehormone”).  It’s the body’s own wonder drug – released when we nurse our babies, for example, as well as during a woman’s stress response. It’s instinctual, it buffers the fight-or-flight response and it encourages us to tend children and gather with other women instead – what’s called our tend-and-befriend response to stress.  This calming response does not occur in men, says Dr. Klein, because testosterone—which men produce in high levels when they’re under stress—seems to reduce the effects of oxytocin. Estrogen, she adds, seems to enhance it.”

Read the entire post “I don’t want to talk about it“- a Judy’s-Must-Read-Blog-Post.

The Ultimate DYI – I’ll make me a new pea brain

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?!!!!!!

hmmm . . . speed up the evolutionary process . . . we could still rule the world . . 

Researchers Grow Nearly Complete Human Brain in Ohio Lab

“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.”

AND!!!!!

With the new 3D printing technology I might be able to make me new brain, each morning, right at home.

It’s SWEEPS “weak”

Haven’t blogged in a while. The last few weeks have been rough – the fibro-fatigue-fiends frolicking fearlessly.  I’m looking for my mop.

mad, sad, fatigue, fear

sweeping away sanity

the broom of my brain

92db0134526be573f75d3cf4e9645951

dust storm of feelings

tiny particles of dirt

blowing through my mind

6827_view

wring out the debris 

clean clear water, bucket brain

gratitude mop up

 

My Motto: Don’t call me. I won’t call you.

I never answer my phone.  I call people back when I have energy or e-mail because two-way phone conversations are physically tiring.  Crazy! . . . sounds crazy, even to me.  So I assume it sounds crazy to you.  

Not wanting to be labeled as “nuts” I usually explain  that after 30 years as a psychotherapist, answering my phone knowing that someone is probably calling in crisis, I’ve become phone-phobic.  

You understand phobia’s and their hallmark of being irrational.  You don’t understand neuroimmune-central nervous system-out-of-wack.  Can’t fault you.  I don’t understand it.  Medical science doesn’t understand it.   

Normal stimuli overload my brain circuits and the brains of others who live with Fibromyalgia, Chronic Fatigue, Lyme disease, Multiple Chemical Sensitivity, brain trauma etc.  There are a lot of theories but no one really knows why or what to do about it. 

Acrylic on Canvas, by moi

Acrylic on Canvas, by moi

Even though I’m a social person by nature all socializing tires me. One or two “events” a week is my limit.  Social Events?  You are undoubtedly picturing me out-on-the-town, wearing a Dior gown and sipping wine at the opera ( . . .  those who know me are picturing me wearing a t-shirt, Levi’s, Crocs and sipping coffee at Starbucks).

Activities that once were pleasurable now create fatigue:

  • Going to the movies or lunch with a friend (afterwards I nap for 3 hours)
  • Participating in any group activity (afterwards I go to bed early)
  • Walking Freddie in the park.  (I go the opposite direction when I see others walking their dogs.  Walking is taxing enough without interacting with dogs’ humans.)
  • Shopping in stores crowded with merchandise.  (My brain goes on visual overload)
  • Talking on the phone to someone I love.  (Yup, two-way conversations take focus and thus energy.) 

Since retiring I’ve done phone sessions with clients.  The pleasure of hearing their voices, catching up on their lives and the honor of hopefully helping them get back on track far outweigh any fatigue that comes later.  I’ve long ago figured out that some things are well worth the consequences of a nap or a few days of inactivity. 

Please continue to reach out. I will be honest with you about my options and energy.  I don’t want to live as a social recluse.  So E-mail me when you want to catch up, share, or get together because I won’t answer the phone . . .  

Hammy Hamster sez: "Nuts?, Did I hear NUTS!)

Hammy Hamster sez:
“Nuts?, Did I hear NUTS!)

This article prompted me to write this post: Cort Johnson, Social Exhaustion The comments are perhaps even more telling than the article itself.

Going Viral

Scratch one more cure . . .  for now.
I started an anti-viral medication that has been successful in treating some people with Chronic Fatigue.  There is a long-held theory that virus are responsible for fibromyalgia/CFS and since I have tested positive for a viral-reactivation it seemed worth a prescription.
After taking the meds for over a month and coping with a bit of  24-hour nausea and headaches, last night I was wakened by really severe stomach pain which radiated to my back .  The cure was worse than the malady. 
Before the pain became full-blown I was playing around with some oil paint and roughed-in this face.  Now looking at my preliminary sketch it’s a window into how I’ve been feeling.  I think I’ll not “finish” the painting and leave it be  . . .  for now.

Oil

Oil

I stopped the medication this morning.  Like my painting, I’m not going to try to “finish off” the virus either  . . .   for now.