Posted in Blog posts, Fibromyalgia

Is #Fibromyalgia Still a Four Letter Word?

5 years ago I wrote, “Fibromyalgia is a Four Letter Word” https://yadadarcyyada.com/2013/08/08/fibromyalgia-is-a-four-letter-word/, and now, 5 years later, I’ve updated it and I think, sadly, it’s still true, tell me what you think.

Guest blog by D. Parker, blogger at https://yadadarcyyada.com/ also a Fibromyalgia London Group member and Peer Leader.

This isn’t meant to be whiny (see how that goes…), or a ‘it can be fixed’, or whatever blog post. Just a few thoughts about why people think Fibromyalgia isn’t a real syndrome, that it’s just lazy, unmotivated people and mostly, why I don’t have answers.

Let’s begin at the end…I don’t have all the answers, maybe because I don’t sleep enough. Also, I’m not a million years old. In addition, I’m certainly not a super genius.

Oh, did I mention I don’t sleep enough?

People prefer to think people with disorders/syndromes such as Fibromyalgia are lazy, I dunno, maybe because they don’t want to accept that they could wake up one morning and have something like: Fibromyalgia/Fibromialgia, Chronic Fatigue Syndrome, CRPS, ME, Lyme Disease and/or another chronic illness.

Instead of doing the whole “there-but-for-the-grace-of-God-go-I” thing, too many people just decide that people with these illnesses/syndromes could do better if they only: weren’t so lazy, would exercise more, ate differently, got a better attitude, tried harder, did more, pushed themselves, pushed through, pushed harder…

It’s easier to believe that, I suppose, than believe someone who was full of energy, productive, happy, motivated, etc. can too quickly become a person: full of pain, fatigued (relentless insomnia and pain can tire you out a wee bit),

frustrated, sad (so many sadz),

depressed, anxious,

plagued with memory issues,

exhaustion, confusion…

have massive struggles to function, and so on.

Fibro becomes a joke, a stain, a dirty word because otherwise people would have to accept the reality that people get sick. Humans get sick. They get short-term illnesses, they get injuries that sometimes heal and sometimes, don’t, they get chronic illnesses, they get terminal illnesses, and some live with agony and sometimes, they die.

People often tell someone with cancer they should fight The Cancer, as though that will fix everything. Yes, poking a toothpick at a dragon works so well. Ever thought of how that makes people feel, when they’ve lost a loved one to cancer? Oh, so my loved one just didn’t fight hard enough, well, thanks, that makes me feel so much better.

The same goes for those who’ve lost a loved one to suicide. I’m sure they feel horrible enough without others implying their loved ones gave up, chose to leave, didn’t love them enough to stay, weren’t strong enough, or just didn’t fight hard enough. 

I don’t live in someone’s head so I can’t say if they tried, if they fought, or if they chose, but neither does anyone else, so no one is qualified to make these judgmental statements. No one. Live your own life and let other people live theirs.

Instead of mocking someone with an illness, try having empathy for them. Not sympathy or pity. Compassion. Kindness. I’m sure there are some bizarro individuals would prefer to be ill than well (but they have a whole other illness), but come on, does anyone, anyone at all truly, deep in their heart of hearts seriously believe that’s a majority?  Most people would choose to be well.

Most people would choose to have a full life, a life with a normal amount of pain and fatigue and other symptoms. Just like most people would choose to beat cancer. Hell, most people would choose not to get cancer at all. Most people would choose not to have a mental illness. If there was a choice involved.

People are slowly coming around to the belief that people who lead a homosexual lifestyle didn’t choose to be that way, it’s the way they are. Why is everyone is fixated on who loves whom…what the world needs now is more love, more fun, more kindness, more compassion, more empathy, more joy. https://yadadarcyyada.com/2015/07/03/how-to-be-good-to-one-another/ It has taken a long time and there are still haters (haters gonna hate) out there, but I bet many people are happy to see a light at the end of that rainbow.

I wonder when that day will come for people with chronic illnesses like Fibromyalgia, or people with mental health issues, or people with Autism, etc.  I wonder if or when people will see them, really see them, for who they really are:  your Mom, your child, your sister, your friend, your co-worker, your Dad, your teacher, your brother, your minister, your neighbour – just people.

Don’t judge people.

Have a little empathy.

Those people might be: interesting, fun, brilliant, a hope for the future, a good friend, or something more than a friend, someone to talk with, walk with, someone who inspires you, or but most of all, who gets you, but you’ll never know if you make judgements, make assumptions.

Don’t miss out!

Copyright D. Parker (aka Donna Parker/yadadarcyyada) 2013-2019. All opinions expressed are that of the author and do not necessarily reflect those of Fibromyalgia London Group (FLG).


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Posted in Fibromyalgia, Uncategorized

Chronic Suckage

Lazy. Crazy. Whiner. Hypochondriac. Attention-seeking. All in your head.   “Fibromyalgia is just another word for lazy.” yadadarcyyada.com/2013/08/31/fibromylagia-is-just-another-word-for-lazy/ 

And the classic, “But you don’t look sick”. Feel free to add more. I think I’ve heard them all…but you never know.

Yup, I got 99 Problems and Fibromyalgia (Fibromialgia) is all of them…or at least it makes any problem much much much much worse.

I won’t bore you with all the symptoms:

  • Extreme, endless fatigue (I’ve never heard, “everyone gets tired”…sigh).

  • Extreme, endless all-over-body-pain 24/7/365 (“everyone has pain, especially as they get older” – how do you presume to know my pain or anyone else’s pain but yours?).

  • Dry eyes/mouth.

  • Hair loss.

  • IBS (Oh joy, love nothing more than talking about my bowels to: doctors, family, friends, strangers, interns, readers…”What did you want to be when you grow up?” “Constipated.”).

  • Dizziness.

  • Clumsiness.

  • Nausea.

  • Depression (tough not to be depressed by all this).

  • Sleep issues (screw off Alpha waves, no one wants you here).

  • Mood disorders (maybe my many, many moods are just as ordered as they should be).

  • Headaches/migraines.

  • Restless leg syndrome.

  • Anxiety (pick a kind, any kind).

  • Tender points (misnomer, not tender, excruciating, but trigger points make sense).

  • Fibrofog (what was I saying?).

  • Memory and learning problems, like, aah, like, well, there’s Fibrofog (what was I saying?).

  • Scattered thoughts (dust in the wind, all my thoughts are dust in the wind).

  • Numbness.

  • Tingling (not the good kind).

  • Shakiness (not the good kind).

  • TMJ (Temporomandibular Joint Syndrome).

  • Painful and frequent urination.

  • You may notice a pattern here, #Pain!

  • Sharp pain, stabbing pain, dull aching pain, burning pain, throbbing pain (Beavis and Butthead laugh for 5 minutes now about “throbbing”).

  • Extreme sensitivity to: light, noise, sounds, smells, temperatures, humidity, dryness, changes in the weather (especially extreme heat or cold, fun in Canada, eh).

  • Also, to tastes, textures (Princess and the Pea was written about someone with Fibromyalia, for sure).

  • Stiffness (not the fun kind).;

  • Especially morning stiffness (not the fun kind).

  • Let’s not forget Allodynia.

  • Itching (like, bugs-under-your-skin-when-jonesing-kind-of-itching, er, for chocolate, my drug of choice).

  • Waking up feeling like you’ve been run over by a truck or attacked by a Terminator or zombie (brains?) – We are The Walking Dead.

  • And don’t even get me started on surviving the Holidaze, er, holidays – Christmas, New Year’s Eve, birthdays, Easter, Thanksgiving, Black Friday (it’s counted as a holiday now, right?), actually I can do CyberMonday, and they’re lined up to take me out for Valentine’s Day

I could go on and on (really), but you get the point.

It sucks.

Chronic suckage.

What can anyone do to try to help chronic suckage? 
  • Pills/medications (anti this, anti that, pro this, pro that, SSRIs, SNRIs, NSAIDs, PB&J – checking if you were still paying attention, lotions, notions, rubs, gels – not the fun kind – vitamins, supplements, opioids, snake oil, gargoyle oil, and on and on).

  • Exercise.

  • Natural remedies.

  • Injections.

  • Yoga.

  • Meditation.

  • Deep breathing (keep breathing).

  • Tai Chi (saved my life).

  • Change of diet (I do FODMAP, look it up, you’ll hate it).

  • Massage (no happy endings).

  • Physical therapy.

  • Rest/relaxation/Self-Care.

  • CBT, CBD, CBC, CBA, COD…

  • Trials.

  • Errors.

It’s all just fleeting moments of feeling almost human.

And if all wasn’t bad enough, many people assume this invisible disability is and let’s see if I have this right, a conspiracy wherein the medical profession has effectively implemented a fake syndrome just to cater to lazy people (wasn’t that nice of them?). Perfectly reasonable, it’s not as if doctors have anything better to do. Or have reputations and licenses to protect. Or have ethics. What exactly would their motivation be? Why make up an illness, aren’t there already enough? Cancer alone should keep them hopping.

There are many health issues that can not be found through standardized testing, for example: Multiple Sclerosis, ALS, Cerebral Palsy, Parkinson’s, Autism, Lupus, ADD/ADHD, wheat or gluten ‘sensitivity’, acute back pain, as well as many mental health issues. So they don’t suffer, don’t feel – it’s all some magical conspiracy…

People like to mock. I get that. It’s become a past-time, even a job for some people, especially in the internet age. I also get those same people would want/expect doctors and people to believe them if they were ill, even if there was no standardized testing for their illness.

To the best of my knowledge, there’s no standardized testing for ignorance or stupidity yet either, but I’d buy stocks for that booming business.

I didn’t ask to be ill. Given the choice I’d be “normal”. I certainly didn’t ask to be mocked and harassed because I’m ill. Even if it was just ‘in my head’, shouldn’t anyone with a health issue be treated with dignity and respect? Maybe we need a standardized test for intolerance.

So how do I cope with ongoing agonizing pain, debilitating fatigue and all the other heaping piles of steaming sh*t that comes with Fibromyalgia aka chronic suckage? If you’re a reader of my blog you know, I think laughter is the best medicine. Laughing even if it hurts sometimes still makes me feel better. I go to a happy place like Psych or George Carlin, Seinfeld, Friends, The Office and more. Tons of laughter a day doesn’t keep the doctor away, but it gives me some quality of life.https://yadadarcyyada.com/2017/12/31/lessons-learned-goodbye-2017/

For example, this was one of my Tweets, “When I see a thong in a store all I think is, how would I explain to #EMTs all my multiple injuries were caused by just trying on a thong. Huh. #ThatsHot #thongs“. @yadadarcyyada 

I love to share the laughter. If I can make someone smile, laugh, giggle, chortle, spew liquid from their nose, then hey, I feel better. Treatments, medications, family, friends and finding a community that gets you, that understands when you have to cancel plans (again)…

Or you can’t remember, ummm, can’t remember, er, huh…and the only good thing you can say about your day is you’re “above ground”, well, anyway.

The thing is, people are just people – no matter how rich or poor; sick (this is an equal opportunity destroyer) or well; all sizes, shapes and shades; known or unknown – you don’t know what you’re missing if you don’t give people a chance. Some will let you down, disappoint, hurt your brain, your heart, your body, but they’re oddly beneficial, they help us appreciate the good ones even more.

Get out there, in person, online, by phone, text, email, do stuff, I don’t know, play cards, smile, knit, donate (give what you can, including your time and talents), bowl, cuddle, talk, sign, sing, walk, dance, embrace your crapathy https://yadadarcyyada.com/2016/05/25/crapathy/

swim, skate, scuba (gate?), especially smile at children, jog, blog, snog (probably not at the same time unless you’re uber talented), ignore, don’t keep score it’s a bore, read, write, compose, doodle, paint, play, bike, hike, “Like”, bake (me a cake? https://yadadarcyyada.com/2016/09/16/you-had-me-at-cake/),

listen, learn, love, add to the world, be part of the solution, go out with friends, care, share, spend time with family, get to know people, smile some more (and more and more and more)!!!

Be kind, be thoughtful, be compassionate https://yadadarcyyada.com/2015/02/20/compassion-never-goes-out-of-style/

Consider others, let your mind soar. I can’t say you won’t ever be sorry, some folks are baffling, but on a whole, you’ll be better for it (and they will be too).

Not asking anyone to feel sorry for me (although compassion and empathy are always welcome), just a reminder that everyone has problems, 99 or less, 99 or more, just because we can’t see them doesn’t mean they aren’t there…so don’t be one of those problems.

Originally published: https://yadadarcyyada.com/2019/11/22/99-problems-and-fibromyalgia-is-all-of-them/

Posted in Autism, Books, Movies, Televison

Sherlock

holmes7Just the name is shiver-inducing.

Sir Arthur Conan Doyle’s timeless masterpiece continues to capture the imagination of millions worldwide and so the adaptations of the occupants of 221B Baker Street continue.

While I still have a soft spot for Basil Rathbone, my first Sherlock, I find room enough for Benedict Cumberbatch and Jonny Lee Miller.

holmes1

Though the BBC series, Sherlock is darker and more true to Doyle’s vision of his Aspergerian detective who solves cases not because he cares as he feels compelled.

I enjoyed Monk with the truly amazing Tony Shalhoub which I always thought was a thinly-veiled Sherlock adaptation.

Also, House MD starring the incomparable Hugh Laurie in which Sherlock Holmes is portrayed as a doctor who detected.house1I also see some of Holmes in shows like Psych and The Mentalist. All characters are amazing detectives who appear to lack empathy and social skills yet end up helping people massively.holmes2

Other actors to have played Sherlock Holmes on screen, stage and radio include: Robert Downey Jr., Ben Kingsley, Peter O’Toole, Matt Frewer, Frank Langella, Peter Cushing, Christopher Lee, Brent Spiner, Stewart Granger, John Gielgud, Peter Cook, Raymond Massey, John Barrymore, Harry Arthur Saintsbury, Leonard Nimoy, Jonathan Pryce, Jeremy Brett, Charlton Heston, Rupert Everett, James D’Arcy, Viggo Larson, Christopher Plummer, Larry the Cucumber, Orson Welles, and more.I’ve thoroughly enjoyed the first three seasons of Sherlock (4th on the way) and am still enjoying Elementary on CBS.holmes5

So what is it that keeps so many of us returning to Sherlock Holmes over and over?
Is it the mystery?
The intrigue?
The clues?
The brilliance of his mind?
I think it’s all that and the friendship between Holmes and Watson and Mrs. Hudson.
As much as Sherlock can be annoying, he is also strangely endearing and we want to visit his exceptional, fascinating mind…just visit.holmes4

So whatever adaptation of Sherlock Holmes you enjoy, it’s lovely to see the game is still afoot after all these years.holmes6