Posted in Fibromyalgia, Uncategorized

Chronic Suckage

“Chronic Suckage” by Guest Blogger, D. Parker https://yadadarcyyada.com who is also a member of Fibromyalgia London Group and a Peer Leader.

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.

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

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.

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

Copyright D. Parker (aka Donna Parker/yadadarcyyada) 2019.

Posted in Uncategorized

Knitting Keeps Us From Unraveling

Fibromyalgia London Group (FLG) invites any member, support person, or member of the public to participate in this exciting new activity program, therapeutic knitting for those with pain and who want more purpose.

Led by Janice Sumpton, Knitter Extraordinaire and Knitwear Designer with decades of knitting experience. Living with chronic pain for more than 20 years, Janice found the rhythm and calming repetition of knitting very therapeutic in helping her cope with pain.

This program is sponsored by our Group, the Fibromyalgia London Group and offered in collaboration with the London Public Library (LPL), to support the needs of the FM/CFS/ME community in London, Ontario, Canada and area, as well as anyone who feel they will benefit from being a part of this new community-led program.

Join us Thursday November 28th, 2019 from 1-2:30pm (doors open until 3pm if you wish to stay and continue) in the Boardroom, 3rd Floor, London Public Library – Central Branch in Citi Plaza (formerly the Galleria), Downtown London, Ontario, Canada. 

This is a FREE (that’s a real word, look it up) program, OPEN TO ALL AGES and all skills, but please REGISTER – simply email mailto:fmgroup.london@gmail.com or phone 519-453-3198 to reserve your seat (if you forget, which those of us with Fibrofog never, ever, ever do or you feel up to it, please join us anyway, drop by and spin a yarn). 

Anyone of any knitting skill level who is:

Interested in learning how to knit or about therapeutic knitting as a coping method for pain management…

Interested in swapping ideas on how to live everyday with pain and manage pain…

Looking to enjoy fun time with others who share similar interests, make friends, etc…

Looking to give back to community by supporting local charities in need of donated knitwear (COMING SOON! Knit/Crochet for Donation to a Local Charity – We Will Provide Supplies!).

Please join us (and tell your friends, family, neighbours, co-workers, children, siblings, Grandma, Grandpa, mailperson, elves, doctors, tell Santa, well, tell everyone)! 

Don’t Know How To Knit? We’ll Teach You! Learn How Therapeutic Knitting Can Help You Cope with Pain. Come Meet for Fun and Crafty Conversations!

Yarn provided for beginners with Instructional Help (bring own 4mm or 4.5mm needles), or please, bring your own project!

In case you didn’t know, you can get 2-hours free underground parking in Citi Plaza if you bring your parking ticket for validation at the Front Desk on the Main Floor.  You will need your Library Card with you.

Contact Jacqueline
Fibromyalgia London Group
Tel: 519-453-3198 ~ Email: fmgroup.london@gmail.com

~ Website: www.fibrolondongroup.ca

Please, join us: @fmlondongroup on Facebook, Twitter and Instagram!

DISCLAIMER STATEMENT: Fibromyalgia London Group [FLG] was created to be a resource of pertinent information, education, and peer-led wellness support to all who attend our programs and events.  While we may invite healthcare professionals, advocates, practitioners or representatives from community organizations to speak at our Group meetings and special public events, FLG does not endorse, support or recommend any specific service provider, treatment, product, theory or person.

Spread the #knittinglove because as we all know, Knitting helps us from unraveling!

So please join us this Thursday November 28th, 2019 at the London Public Library for the Fibromyalgia/Chronic Pain Knitting group! Only two more chances until Christmas (Thursday November 28th and Thursday December 12th, 2019 1-2:30pm) at Central Branch, London Public Library then we’ll pick up our stitch in January 2020!

Posted in Fibromyalgia, Uncategorized

Hope You’ll Follow Suit and Join Us Monday November 11th, 2019 for Cards and More!

Please join us Monday November 11th, 2019 1-3pm for: Cards! Laughter (still the best medicine)! Friends! Friends you have yet to make (you just haven’t met them yet)! Company! Sharing! Caring! Sound good? Then join us for yet another upcoming event! Monday November 11th, 2019, that’s 1pm until 3pm! Love to play cards? Want to make new friends and spend time with others who understand Fibromyalgia/CFS/Me? Then have we got a day for you? Play cards, talk, enjoy! Contact Jacqueline at: fmgrouplondon@gmail.com or 519-453-3198 for the details (time, place, etc.). Special thanks for the amazing Leanne for being the hostess with the mostess!

Posted in Educational, Fibromyalgia, Uncategorized

Fibromyalgia Knitting with Pain and Purpose Group Halloween Treat with No Tricks!

Led by Janice Sumpton, Knitter Extraordinaire and Knitwear Designer with more than 50 years knitting experience. Living with chronic pain for more than 20 years, Janice found the rhythm and calming repetition of knitting very therapeutic in helping her cope with pain.

Fibromyalgia London Group (FLG) invites any member, support person, or member of the public to participate in a new activity program, KNITTING WITH PAIN AND PURPOSE. 

The program is sponsored by our Group, the Fibromyalgia London Group and offered in collaboration with the London Public Library, to support the needs of the FM/CFS/ME community in London, Ontario, Canada and area, as well as anyone who feels they will benefit from being a part of this new community-led program.

Our inaugural session will be held on Thursday, October 31st (Halloween, all treat and no tricks!) from 1-3pm in the Boardroom, 3rd Floor, London Public Library-Central Branch in Citi Plaza (formerly the Galleria), Downtown London, Ontario, Canada. 

This is a FREE  program, OPEN TO ALL AGES, but REGISTRATION IS REQUIRED – simply email mailto:fmgroup.london@gmail.com or phone 519-453-3198 to reserve your seat. 

Any male or female of any knitting skill level who is:

Interested in learning how to knit or about therapeutic knitting as a coping method for pain management…

Interested in swapping ideas on how to live everyday with pain and manage this pain…

Looking to enjoy fun time with others who share similar interests, make friends, etc…

Looking to give back to community by supporting local charities in need of donated knitwear (COMING SOON! Knit/Crochet for Donation to a Local Charity – We Will Provide Supplies!).

You’re welcome to join us (and tell your friends, family, neighbours, co-workers, everyone)! 

Don’t Know How To Knit? We’ll Teach You! Learn How Therapeutic Knitting Can Help You Cope with Pain. Come Meet for Fun and Crafty Conversations!

Yarn provided for beginners with Instructional Help (bring own 4mm or 4.5mm needles), or please, bring your own project!

Remember, you can get 2-hours free underground parking in Citi Plaza if you bring your parking ticket for validation at the Front Desk on the Main Floor.  You will need your Library Card with you.

Contact Jacqueline
Fibromyalgia London Group
Tel: 519-453-3198 ~ Email: fmgroup.london@gmail.com 

~ Website: www.fibrolondongroup.ca

Find Us @fmlondongroup on Facebook, Twitter and Instagram!

DISCLAIMER STATEMENT: Fibromyalgia London Group [FLG] was created to be a resource of pertinent information, education, and peer-led wellness support to all who attend our programs and events.  While we may invite healthcare professionals, advocates, practitioners or representatives from community organizations to speak at our Group meetings and special public events, FLG does not endorse, support or recommend any specific service provider, treatment, product, theory or person.

Posted in Educational, Fibromyalgia, Sharing Circle, Uncategorized

Mark Your Calendars – Saturday November 2nd, 2019!

You are not alone. Need to share? Want to listen? Want to be heard? By people who understand? Join our caring Fibromyalgia and Chronic Fatigue Syndrome Sharing Circle session and you’ll get all this and more!

Please, join us at the North London Optimist Community Centre, 1345 Cheapside St. (off Highbury Ave.) in London, Ontario, Canada on Saturday November 2nd, 2019 1pm-2:30pm (peer leaders will be there by 12:30pm, come early, talk, connect, share, care) for the Fibromyalgia (CFS/ME) London Group Sharing Circle session.

To register contact, call Jacqueline at:
519-453-3198 or email:

fmgroup.london@gmail.com

What’s $20 per year and gives you and a listed supporter/caregiver/loved one/spouse/friend, etc. unlimited access to all Fibromyalgia (and CFS/ME) London Group activities, Sharing Circles, special events, speakers, resources, etc.? A membership to FLG (Fibromyalgia London Group). Or come and visit, a $5 donation/person will let you see what we have to offer. Fill out an application and become a part of this volunteer-driven, self-help group today!

Our Mission:

To provide persons with Fibromyalgia (FM) and/or Chronic Fatigue Syndrome (CFS/ME) with:

  • Access to a safe, scent-free, supportive, inclusive space where individuals, their families, caregivers, and supporters can, without judgement, listen to and learn from each other.
  • Opportunities to share personal experiences, information, ideas, and strategies to help one cope with symptoms and live a healthy life or lifestyle.
  • Increased awareness and education on this invisible, chronic multi-systemic illness.
  • Inspirational and acceptance in a caring, positive, fun and friendly environment.
  • Ways to develop and strengthen one’s ability to not just survive with FM and/or CFS/ME, but to thrive, in spite of it.

You can also find us on:

And https://www.facebook.com/fmlondongroup/


Thank you. Hope to see you there. And remember, despite what Fibromyalgia and/or CFS/ME makes you think, you are not alone.

Disclaimer: The Fibromyalgia London Group (FLG) was created to be a resource of pertinent information to those who attend our meetings, sharing circle sessions, and special events. While we invite medical and healthcare professionals, advocates, practitioners or representatives from community organizations to speak at our meetings and special events, FLG does not endorse, support or recommend any specific treatment, product, therapy or person. The opinions, beliefs and viewpoints expressed by participants and group members do not necessarily reflect the opinions, beliefs, views, or official policies of the FLG.

Posted in Educational, Fibromyalgia, Sharing Circle, Uncategorized

#Fibromyalgia Makes You Think You’re Alone…You’re Not

You are not alone. Need to share? Want to listen? Want to be heard? By people who understand? Join our caring Fibromyalgia and Chronic Fatigue Syndrome Sharing Circle session and you’ll get all this and more!

Drop by Earl Nichols Recreation Centre @ 799 Homeview Rd. (near Southdale and Wharncliffe) in London, Ontario, Canada this Thursday October 17th, 2019 @ 11am-12:30pm (peer leaders will be there by 10:30am, come early, talk, connect, share, care) for the Fibromyalgia London Group Sharing Circle session.

Membership to the Fibromyalgia (and Chronic Fatigue Syndrome) London Group (FLG) is $20 a year (really) and that includes free admission for yourself and a listed caregiver, supporter, friend, family member, spouses, partners, loved ones, etc. to any and all events, special events, guest speakers, etc. for the whole year! Fill out an application and become a part of this volunteer-driven, self-help group today! Not sure if you want to join, come out to a Sharing Circle or meeting, visitors and non-members require a $5 donation.

To register contact:

519-453-3198

fmgroup.london@gmail.com

https://www.facebook.com/fmlondongroup/

https://twitter.com/fmlondongroup

Our Mission:

To provide persons with Fibromyalgia (FM) and/or Chronic Fatigue Syndrome (CFS/ME) with:

  • Access to a safe, scent-free, supportive, inclusive space where individuals, their families, caregivers, and supporters can, without judgement, listen to and learn from each other.
  • Opportunities to share personal experiences, information, ideas, and strategies to help one cope with symptoms and live a healthy life or lifestyle.
  • Increased awareness and education on this invisible, chronic multi-systemic illness.
  • Inspirational and acceptance in a caring, positive, fun and friendly environment.
  • Ways to develop and strengthen one’s ability to not just survive with FM and/or CFS/ME, but to thrive, in spite of it.

Thank you. Hope to see you there. And remember, despite what Fibromyalgia makes you think, you are not alone.