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?).
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.”).
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).
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).
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.
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).
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).
CBT, CBD, CBC, CBA, COD…
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, “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 the group’s blog, fibrolondongroup.ca
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)!!!
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.
A community-based, volunteer-driven, self-help and wellness support group for people (and loved ones) with Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS/ME).
Join us online and in person - we're here for each other.
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