Posted in Fibromyalgia, kindness

99 Problems and #Fibromyalgia Is All Of Them

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.

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/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.

For example, this was one of my Tweets last week, “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.

Glad there are people around who understand, including but not limited to: the-words-are-not-enough-to-describe-how-wonderful-they-are-Fibromyalgia London Group (FLG) #FibromyalgiaLondonGroup #FLG, also for those with CFS, ME, chronic pain, etc. I’ve even tried to knit (What?!? Please note the word, “tried”).

Reunited with a fantastic friend from college (we’d lost touch when the dinosaurs died), and get this, we started going to the same Fibro group on the same day, from different cities. I don’t know what they call that, fate, destiny, providence, kismet, but I call it cool and lucky.

Finding ways to help myself by helping others.

I am so sure you can see my chocolate-covered fingerprints all over their blog, fibrolondongroup.ca And hey, we’re also on Twitter, Facebook, Instagram @fmlondongroup

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.

 

Posted in social media, Televison

Death By Demographics

https://yadadarcyyada.com/2018/01/29/death-by-demographics/“You don’t stop
laughing when
you grow old,
you grow old
when you stop
laughing.”
– George
Bernard
Shaw

There isn’t as much laughter as there used to be,
no, I’m completely wrong, there’s just as much, if not more laughter, it just seems less jovial, less fun, more jeering, sneering, mocking; less of a tonic, more of a poison. https://yadadarcyyada.com/2018/01/29/death-by-demographics/
We’re in the middle of a Civil War, without the cool uniforms, just about as many guns, more antibiotics and opioids, but with the same unfortunate emphasis on uncivil. https://yadadarcyyada.com/2018/01/29/death-by-demographics/I don’t think this will change anytime soon. But in the whimsical winsome wisdom of the surprisingly philosophical show, Blossom:
“Don’t know about the future, that’s anybody’s guess
Ain’t no good reason for getting all depressed
Buy up your pad and pencil, I’ll give you a piece of my mind
In my opinionation, the sun is gonna surely shine”
(make sure you have sunglasses).
https://yadadarcyyada.com/2018/01/29/death-by-demographics/“Opinionation” is right on – nations fueled by opinion and connected by the internet. https://yadadarcyyada.com/2015/05/19/the-internet-has-spoken/ Many feel out of control (without even the illusion of control), and have inaccurately begun to believe our opinions are truth, that feelings are facts while desperately trying to process more information in a day than we used to get in 10 years…is it any wonder we’re clinging to numbers, theories, gossip, polls, conjunction, speculation, sensationalism.https://yadadarcyyada.com/2018/01/29/death-by-demographics/The song, “Murder by Numbers” by The Police keeps popping into my head; or Suicide By Numbers, we’re letting demographics kill our sense of self and poor common sense on a slab somewhere, waiting for the autopsy. https://yadadarcyyada.com/2018/01/29/death-by-demographics/Statistical characteristics of human populations, such as age or income, could be used to find out who needs shelter, food, medical attention, instead it’s used mostly to identify markets to sell sell sell (did I mention to sell?). It adds to the distraction and the ‘us versus them’ mentality that is tearing us apart.https://yadadarcyyada.com/2018/01/29/death-by-demographics/Death By Demographics  is also the title of the final episode of Murder She Wrote, not unironically was cancelled in 1996, due in part to demographics and Angela Lansbury’s boredom after 12 years of playing Jessica Fletcher, either the smartest woman ever or a serial killer who pins crimes on others. https://yadadarcyyada.com/2018/01/29/death-by-demographics/It was a time of strange, supernatural, and youth: Friends (How you doin’?) https://yadadarcyyada.com/2017/09/28/we-were-on-a-break/, The X-Files (The Truth Is Out There? https://yadadarcyyada.com/2017/10/26/my-big-fat-supernatural-life/), https://yadadarcyyada.com/2018/01/29/death-by-demographics/ 7th Heaven, The Unabomber was captured, so many were doing the Macarena (and badly), there were heroes and zeroes, Independence Day, Spice Girls (oh no, now I’m humming “Wannabe”), 3rd Rock From The Sun,https://yadadarcyyada.com/2018/01/29/death-by-demographics/ Tupac died (or did he?), ER, talking about the Superbowl (so much has changed…), Tickle Me Elmo – good thing Fifty Shades (ummm, Happy Valentine’s Day???) wasn’t out then, folks would have lined up to buy Tie Me Up and Tickle Me Elmo https://yadadarcyyada.com/2015/02/12/fifteen-shades-of-valentines-day/ , Seinfeld (What is the deal with that?)…

https://yadadarcyyada.com/2018/01/29/death-by-demographics/Demographics feed our fear and anger. Our fear of missing out (FOMO https://yadadarcyyada.com/2014/11/08/is-everyone-hanging-out-without-me/    https://yadadarcyyada.com/2017/01/06/im-not-inclined-to-resign-to-maturity/), and our fear/anger of not getting enough or what we “deserve”. https://yadadarcyyada.com/2018/01/29/death-by-demographics/Social media is the master class of demographics, people mindlessly drooling over videos, pictures, stories –  a viral version of gossip and tabloids, oozing out of your laptop, tablet, desktop, and/or phone.https://yadadarcyyada.com/2018/01/29/death-by-demographics/Numbers are definitely the ruling class. The nobles send out the knights to hack our brains, find out what scares us, what tempts us and there it is, ready to by.https://yadadarcyyada.com/2018/01/29/death-by-demographics/Even blogging has become all about the numbers, instead of connection. https://yadadarcyyada.com/2017/02/02/theres-no-crying-in-blogging/https://yadadarcyyada.com/2018/01/29/death-by-demographics/Numbers are important, but letting them dictate who we are, what we are, what we do, you have to show some caution. Choices should be made with information, knowledge, facts…anyone remember those?https://yadadarcyyada.com/2018/01/29/death-by-demographics/Maybe I’m just looking for answers where there are more questions, I shouldn’t blame numbers, they’re just hanging around, building the universe, what we do with them isn’t their fault; maybe they could even help us remember we’re all in this life together. We’re all in this life together (oops, there goes my Groundhog Day again https://yadadarcyyada.com/2014/02/02/groundhog-day/). So stay warm, eat some pancakes https://yadadarcyyada.com/2015/02/17/well-always-have-pancakes/, find out how many weeks of winter are left, love, and keep laughing, but not at each other.https://yadadarcyyada.com/2018/01/29/death-by-demographics/

Posted in Books, Chocolate, Family, Movies, Music, Televison, Uncategorized

In My Life I Loved Them All

1funny629Of
lovers
and
friends
I still
can
recall.
Some
are
dead
and
some are living…
In my life I loved them all.
~The BeaTles

Why do we love when it hurts so much to lose those we love?
How would you answer this question, dear readers?
My answer is as simple and as complex as love itself.
I don’t know for sure, but I think because it feels so amazing to love and be loved, also, we need each other and love connects in a way that nothing else can.

1funny632

Love and loss haunt me these days.
I decided reading would offer it’s usual distraction.
As I read Love, Rosie aka Where Rainbows End by Cecelia Ahern (Hachette Books), I felt like I was watching a long Friends episode.
Beyond wanting to swat the characters for being such annoying goofs, I was left with a nagging feeling about love and communication and their places in the modern world.

Lily Collins in Love, Rosie
This book and movie adaptation wouldn’t have happened if the two main characters even once had a simple, honest conversation. There, end of book and they lived more or less happily ever after.
But that’s the thing, isn’t it? We can communicate each moment of every day in multiple ways, yet our communication skills seem to be deteriorating. Does non-stop communication help if we’re not telling each other what we really need to know?
Ahern also wrote P.S. I Love You, a funny and poignant book, with the beautiful lesson of going on when you’re ready to go on, how you’re ready to go on, after any kind of loss, but I still liked the movie better – I blame Harry Connick Jr.

1funny637

I’m sorry, baby, I didn’t mean it. There’s also: Jeffrey Dean Morgan, Gerard Butler, and James Marsters. Oops, I’m sorry book, probably should have read you before I saw the movie. The characters didn’t give me what I wanted, I didn’t feel a sincerity or connection, or maybe I was expecting too much.

1love4

Love comes into our lives in many ways, family, friends, lovers, partners; to fill, enrich, challenge, sustain, nurture, embrace, excite, thrill, comfort, cherish, and support us.
It also leaves in many ways.
How can love continue to breathe when it’s viciously torn away, crushed, betrayed, taken for granted, withdrawn, or ignored?
Because it once was and in some way, somewhere, will always be.
I lost someone I love very much yesterday.
I really can’t imagine a world without…but I must.
Gone from this world, but forever in my heart.

1funny627

Which weirdly leads me to Week 4 of my Changes/Happiness Project. I wanted to fall in love again with life, and despite the loss life has repeatedly pummeled me with, I want to keep loving. Here are the first 3 weeks of challenges, if you wish to follow along, or just read about it.

https://yadadarcyyada.com/2015/06/03/dont-worry-be-happy/
https://yadadarcyyada.com/2015/06/09/to-blog-or-not-to-blog/
https://yadadarcyyada.com/2015/06/15/rock-me-amadeus/

Week 4 (has it really been that long?):

1. Decide on 5 things I’d love to do today and just do them (within the limits of time, budget, circumstances, etc.)

2. New bedtime routine: think of 5 things that went well or I was grateful for today and 5 things to hope for, in days ahead.

3. Write down 10 things I want to change, but think I can’t…try to change them.

4. Avoid the cake stalking me. You give cake a bad name. It’s the power of cake. You’d think that people would have had enough of silly cake songs… Don’t know how much longer I can hold out.

1funny589

5. Reduce stimuli (mental and physical).

6. Remove a 100 calories per day (chocolate, I still love you, but there’s going to be a shortage of you soon and we have to get used to being apart…ok, that’s long enough.)

7. Construction begins on our street. Allow some time each day to admire the workers…work.

1funny69

So why do we love when it hurts so much to lose people?
You don’t turn down the greatest gift in the world just because you can’t keep it forever.

Posted in Family, Uncategorized

Coulda Woulda Shoulda

1age16

The worst part
 about growing old,
surprisingly,
isn’t:
Wrinkles – although watching your face
become a road map to your final destination isn’t pleasant;
Creaking joints/aches and pains –
maybe shouldn’t have done that.
Learning more than you ever wanted
to learn about some people – sigh.
Losing your nouns, keys, and even memories –
although, frustrating.
The worst part is loss.
Some experience loss early and often through life,1funny65
others face the inevitable and unenviable state of loss
through time.

After losing someone you start thinking about your life
and like most people, I have some regrets.

I regret not seeing a friend was really an enemy
And an enemy was really a friend
I regret harsh words spoken
Cuts that will never mend
I regret not doing what I wanted to do
And doing what I did not want
I regret not being stronger
For being frail when I should have fought
I regret worrying about little things
That only mattered in my head
I regret thinking I knew it all
Using sarcasm to cover pain
I regret turning away from love found
Not recognizing love given
Doing too much
Doing too little
But these are backwards
And do not overwhelm
The smiles I was given
The smiles I received
The love that I treasure
Compassion given
And accepted
Hope lost and recovered
Happiness collected
All invaluable1age14

Posted in Family, Uncategorized

Goodbye Dearest Friend

Yesterday I woke up to different world.
That happens every day, but some days,
some days the changes are horrible.
My best friend of almost 30 years passed away two nights ago.
Rose was sweet, funny, kind, brave, beautiful,
stubborn, strong, talented,
just a wonderful person.
She was always cool, not just cool,
but never judging or cruel.

scan0009Here are some pictures of Rose (in the pink she’s dressed for Halloween giving me the what, more pictures look – as much as Rose loved taking pictures she didn’t like having them taken of her; I feel the same).
The others are of her and I in photo booths (remember those, the original selfies). We were young and always did the same pose, I’m in the front, trying to look sophisticated and she’s trying to hide from the camera…I think, who knows, it was a long time ago.

scan0002
Images courtesy: D. Parker and a photo booth

We had some wild times together.
We had long talks and laughs.
We shared our love of music and fun.
She was Godmother to my son.
Always there, always wonderful.
I can’t imagine a world without Rose.
Though my heart is aching,
she will remain there
because she’ll always be my best friend.
I was very lucky to have known her, as was anyone who knew her.

Those who touch our hearts, stay in them forever. Goodbye Rose, sister-in-my-heart,
I hope you’ve gone to rock’n’roll heaven!

I woke up this morning thinking it had all been a bad dream. Then the pain hit me hard enough to almost knock me off my feet.
These are the days I wish I had a time machine to go back,
to change things, to just have more time with those I’ve lost.

Death seems pointless, but it brings things into sharp focus for those left behind. Or it should. It shows clearly what is important and even more so, what isn’t important. We shouldn’t spend time on petty things, narcissism, fear, worry, and hate. We should be loving, giving, caring, and worry less about the material things, they can all be replaced…people cannot.

“Life is mostly froth and bubble,
Two things stand like stone.
Kindness in another’s trouble,
Courage in your own.”
~Adam Lindsay Gordon

Posted in Blogs, Family, Uncategorized, Weight

Revenge of the Nouns

1age11As I age (totally gracefully, of course), I notice an ever-growing Pros and Cons List accumulating in my brain.

I’ve also notice one side of the list is getting much longer than the other.

The Pros (or what we gain as we get older):
Experience
Wisdom
Friends
Family
Knowledge
Cynicism
Wrinkles
Habits
Humour
Weight
Hormones
Self-confidence
Happiness
More candles on your birthday cake

1age5

The Cons (or what we lose as we get older):
Keys and other stuff  – although I prefer to think of them as ‘in a safe place’, er, somewhere
Hair – it’s ok, it just migrates to your nose, ears and chin
Friends
Family
Hormones
Elasticity
Happiness
Ability to ignore distractions
Cells and stem cells lose their luster
Self-confidence
The battle with gravity
Nouns – this one is mysterious, you find yourself able to describe the noun in great detail – the thing you wear, in the winter, to keep warm, two sleeves, zippers up…yet somehow in all that, the word ‘coat’ eludes you. It works somewhat better in writing.

Some things make both lists.

Is there anything some of my more ‘age-enabled’ readers have noticed they’ve gained or lost?

1age6

To me, age is just a number, one that we should be proud of as it gets higher, hint, hint, it means we’re still living.

Is it sad that society worships youth? Definitely, age has so much to offer, even more if you can enjoy the distinctive and sometimes amusing parts of aging.

The truth is, we’re all happier or sadder at different points in our lives for different reasons. Enjoy each moment, as many as there are.

I’ve got to go, to watch that show, where the guy asks the questions. You know, you have to answer in a question form. It’s been on a long time. I’m sure I’ll do really well, answering the, you know, thingies.

1age13

Posted in Family, Internet, Political, Uncategorized, Weight

So You’ve Ruined Your Life…Now What?

So You Ruined Your Life...Now What?You ruined my life!
My life is ruined!
They’re ruining my life!
People use the word ruin a lot,
I do not think it means
what they think it means.
Your life can be altered,
sometimes in extremely
negative ways,
perhaps even
screwed up royally,
but your life
can’t be ruined…
technically.

So what if you:

1. Shared a picture, tweet, post, status update etc. that has offended, disturbed, cost you a job, relationship, friendship, and/or caused massive backlash? Learn from it. People are complex, multidimensional, social media tends to be flat, a moment frozen in time which you have no idea how people are viewing or why, what their filter is, what their life experiences are, etc. It’s so easy to offend on social media, if I haven’t done so already, keep reading, odds are someone will be offended by this.

2. Stayed too long and put too much into trying to save a toxic relationship, whether with a partner, friend, family member? ‘Bad’ relationships can lead to low self-esteem, depression, resentment, fatigue – a waste of time and energy. You’ve got to know when to hold ’em and know when to fold ’em, that isn’t just in poker.

1life8

3. Ate too much over the holidays? Spent too much over the holidays? Exercised too little? No use beating yourself up, accept responsibility and change.

4. Fell in love and fell hard…with stuff. It’s easy to do, shopping in stores, online, it’s exciting, it’s cool, it’s fun, everyone praises and envies your stuff; like any addiction you can choose what you feed it. Is the gratification worth the consequences?

1life11

5. Believed things you heard or read or watched. We’ve all done it, but there’s a lot of bad or just plain wrong information, especially on the internet. Take things with a hefty truckload of salt.

6. Been complacent. You hoped governments and corporations had your best interests at heart. They don’t. They should. But they don’t.

1ashock10

7. Forgot gratitude and took things for granted. I’m sure we’ve all done this, you get comfortable with people, things and you forget – they can all disappear. It’s so easy to accept, expect, and forget to be thankful. Broken record here, but learn from it.

8. Worried too much about what you say or do. Being yourself is so last year and what if you offend someone or they don’t like something you said or did? You can’t please everyone, so unless you’re hurting someone, this too shall pass. If they don’t like you when you’re really you, move on.

1ablog15

9. Gave up on dreams, decided to settle? It may not be too late, at least to have a modified version of those dreams. Keep trying.

10. You’ve fallen and you stayed there…There’s no time limit on getting back up. It doesn’t matter how long it takes, get up, dust off, you’re back!

1blog49