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 sleep, Uncategorized

Follow Your Dreams. Go To Bed.

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/ I’m tired of being told to sleep. Even more tired of being told to sleep more. You’d think I sleep in a crib with bunny sheets, stuffies, and a Nightmare Before Christmas mobile for the amount I’m told to go to sleep. Everyone is telling me to sleep, wishing me a good night’s sleep, telling me all about the importance of sleep. Magazines and blog posts tell me to sleep. Books tell me to sleep. Family and friends tell me to sleep. TV tells me to sleep, even provides programs that attempt to bore me to sleep, nice try TV, still awake.

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/
I’m mocked by the benefits of sleep. I know that sleep is connected to the brain and it’s the most important organ, then again, look what’s telling me that, my left brain barely knows what my right brain is doing.

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

Sleep promotes creativity, attention, apparently it helps heal, restore, keeps anxiety, depression, colds and other ailments at bay, and improves memory….Hmm, what were we talking about? Oh yes, sleep. It helps you lose weight, build muscle, stop inflammation. Doesn’t sleep sound amazing?

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

I crave sleep, like it’s a plump juicy strawberry covered in rich chocolate nestled on fluffy clouds of whipped cream. I dream of sleep. I covet it. Sometimes sleep envy eats at me like a rat gnawing on cotton candy at a country fair.

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

I worship sleep, who needs celebrities, I only want to imitate sleep, I want to be sleep. Hi sleep – I’m your #1 fan (and those aren’t pillows).

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

I even snuggle with my bed, swaddling it with a decent thread count, soft blue sheets decorated with sheep, each with their own number, jumping over fences. My room is almost as dark as the bottom of the Mariana Trench, perhaps darker than the Batcave when Batman can’t find the light-switch.https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/I slept during the first trimester of pregnancy, I’d do just about anything for sleep, but, ummm, well…

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

Like many with Fibromyalgia https://yadadarcyyada.com/2013/08/31/fibromylagia-is-just-another-word-for-lazy/ https://yadadarcyyada.com/2013/08/08/fibromyalgia-is-a-four-letter-word/ I’ve tried: melatonin, serotonin, valerian, chamomile, progressive muscle relaxation, sleeping pills, tryptophan, alcohol, Tai Chi, yoga, meditation, alien cuddle exercises…

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

sleep masks, abdominal breathing, cognitive behaviour therapy, kava, but no, my alpha waves are trouble makers. Is it any wonder I love the band R.E.M.? I’ve even thought of building a wall between my alpha waves and my delta waves and make the alpha waves pay for the wall. And now as an added bonus I’m playing that hot new game: blankets on, blankets off, blankets on, blankets off…what was the prize again?

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

Insomnia has some benefits. I get exercise walking and I experience the, er, inspiration of public transit because I won’t drive when tired. I’ve also been organizing my home on the theory if I’m extremely organized I’ll sleep better. So far, no luck, but maybe obsessively organized people are just be too lazy to search for stuff. I wouldn’t want to be seen as lazy.

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

I wish I could use the time to write or do something else productive, but alas, after a certain hour my mind is more or less mush.

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

You can’t always get what you want, like sleep, but that doesn’t mean you just give up. You keep going, keep trying, keep reaching, whether it’s for a forty winks, a job, losing weight, climbing Mount Everest, seeking to right wrongs, swimming the English Channel, help others, being an author, scientist, artist, astronaut, singer, teacher, leader…

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

I do have ambiguous feelings about a creepy Sandman sneaking into my room, or some strange Greek god invading my dreams, shudder, what form would he take on these days, no thanks, Morpheus. It’s not like I’m asking to be Rip Van Winkle or Sleeping Beauty, just less tired.

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

Maybe I could think of my insomnia as a fascinating quirk, but all things considered, I’d rather be sleeping.

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

Happy Thanksgiving to all those who celebrate (it should be every single day!) and remember, shopping is not the true meaning of being thankful…really.

https://yadadarcyyada.com/2016/11/17/follow-your-dreams-go-to-bed/

“Did you sleep well?”
“No, I made a couple of mistakes.”
~Steven Wright

Posted in Blogs, Books, Canada, Doctor Who, Fibromyalgia, Internet, Movies, Music, Televison, Uncategorized

To Blog or Not To Blog

1funny452I have always been me and despite many attempts to make me not me, I still seem to manage to be me.

That’s not always a good thing.

Read some of my stuff, comment, critique, praise, ignore, puzzle, or just do whatever you want.

That’s my blog bio…everything else you’ll learn in my posts or you don’t care.

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Every time I think I understand, even vaguely, how the world works, it tilts on its axis, spinning me right round, baby right round, like a record. Turns out, the blogging world is no different. Like everyone else on the planet (that might be a slight exaggeration, overstatement was never my strong suit), I have a blog. If I had a cat it would have a blog about sleeping, eating, and occasionally chasing a mouse lurking around the property. The mouse would have a blog about his adventures trying to escape the cat that bothers him while he’s trying to lurk around the property. And so on.

August 2013,  I started this blog to relax, to practice writing, and to be more concise, with varying degrees of success. My Very Me-ness doesn’t always translate well, but no need to worry (hear that brain, no need to worry…forget it, it’s not listening), I’ve been embraced by readers, bloggers, etc. and I feel snug as a bug in a virtual rug.

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Blogging has been difficult in many ways, but has made me fall in love with writing again, which guided me to start a year-long project to add even more happiness (Or contentment? Peace of mind?) to my life.

I more or less doubled my 7 goals in my first week https://yadadarcyyada.com/2015/06/03/dont-worry-be-happy/, even giving up 4 TV shows, but then I added 2, drum roll please, ok, I really only gave up 2 (math rules!).

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This week’s goals:
1. Remove 15 minutes or more of screen time per day and play a game with my son (I want chess, he wants Pokémon, maybe we need a Pokémon chess set).
2. Remove 100 calories per day (No cheating, it can’t be veggies…Step away from the cookies).
3. Remove 15 minutes or more of screen time per day and just write, doesn’t matter what.
4. Remove 15 minutes or more per day of sitting time (replace with Yoga and Tai Chi).
5. Spend 15 minutes or more per day submitting articles and manuscripts, especially knowing they might be rejected.
6. Change 15 minutes of internet time to relaxation and rest.
7. Give away, use, or get rid of 1 or more items a day.

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1funny433Blogging myths busted and wisdom learned:

1. Blogging is solitary. Wrong. Blogging, my friends, is social and addictive, like sugar, and as the song by Maroon 5 says (I’ve tried to get it out of my head, believe me), I need a little sweetness in my life, your sugar, yes, please!

2.You need to have something to say to have a blog. How snotty and daft was that assumption? Everyone has something to say.

3. Blogging is simple. Wrong again, complicated, yet worth it, despite the intricacies that sometimes make you feel like your head might explode. Mistakes have been made and more shall be made; it’s all part of learning.

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4. Success! I thought I needed to be a world-famous writer, then I saw comments that said I’d made people laugh, smile, and think. Anything else that comes along would be the icing on this delicious, chocolatey cake of a blog experience thanks to you, dear readers.

5. Blogging is constant. Wrong. As with life, the only thing you can count on in blogging is change.
For example, I believe the WordPress motto is: If it ain’t broke, fix it a few times a day.
Twitter seems to have a midlife crisis every few weeks and I don’t know what happened to Facebook.
There are: trolls, traffic, topics, taboos, privacy issues, time, concentration…what was I saying? Oh yes, so the question today is, to blog or not to blog?
For now, the answer is…why not?

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