Fibromyalgia And Me

I could have spent most of Fibromyalgia Awareness Month writing about my experience of this condition. I could spend a year writing what people don’t know or understand about it.

However, I plan for this to be my only post on that topic during this Fibromyalgia Awareness Month, because I don’t like to complain and I don’t want to sound like I am hiding behind my disease or making excuses. 

Fibromyalgia is a diagnosed medical condition— now. It wasn’t always. It has a wide variety of symptoms, although they basically all contribute to chronic pain and overwhelming fatigue. 

Because of Fibromyalgia, I have pain all the time. Think about that. 

Pain.
 All.
The.
Time. 

It doesn’t ever completely go away. The best I can hope for is that it will ease off a bit, and that I’ll have more good days than awful ones. 

When people present to the Emergency Department or paramedics with pain, the standard procedure is to ask them to rank it between 1 and 10, assuming that 10 is the worst pain they have experienced. I wake up most days to a starting level of about 4 or 5 for me. With medication, I can generally keep it down to about a 3. 

That’s why I have structured my working week so that I start a bit later in the mornings. It’s not because I don’t want to get out of bed: it’s because when I do, I am stiff and sore and it’s really hard to get moving. 
As the day wears on, my pain levels start to increase. My legs feel heavy and hard to lift when I walk. My feet  begin to ache, and that often turns into a throbbing pain that starts to work its way up my legs. It can take hours for the aching to subside enough to let me sleep, especially if I have been on my feet a lot. A similar thing happens with my hands and arms if I am using them a lot, and especially if it involves holding or carrying anything with a bit of weight in it. It’s not unusual to end each day feeling like I’ve been either beaten up or body slammed by someone or something a lot larger than me. 

Anytime I get stressed or anxious, or when my depression is messing with me, my pain levels flare. Overtiredness also increases my pain. Sometimes, I reach that level of tiredness by lunchtime and still have two classes to teach and a 40 minute drive home before I can rest. Add in a work deadline or two and things can get pretty horrid. 

All of this is completely separate from my back pain, which is a different thing and a different type of pain altogether, and which I am able to manage fairly effective for the most part.  

The problem with pain is that people can’t see it like they can if you have cuts and bruises or a cast. You can hide a lot behind makeup and a smile. 

When they call this an invisible illness, they’re not kidding. If I had a dollar for every time someone said to me “But you don’t look sick,” I could quit work and live very nicely on the interest. It’s such a shame I can’t bill people for their insensitivity or ignorance. 

I know it’s not a death sentence like some other diseases are. It is, however, a life sentence. As things stand, there’s no cure in sight. All I can do is keep up my painkillers and anti-inflammatories and hope for the best. 

None of this makes me, or anyone else with Fibromyalgia, weak. 

It takes strength and courage to get through each day, and sometimes that’s on a moment-by-moment basis. It takes resolve to blink away the tears and keep showing up for work or social or family occasions. It takes guts to say, “Actually, I’m not doing so well” when people ask, or to write a post like this one. In a world that prioritises health and beauty, brokenness is often an unpopular confession. 

I have Fibromyalgia. I don’t want sympathy or pity. I don’t want people to tell me I am strong or brave. You bet I am! 

What I really want is more awareness, better understanding, and more effective pain relief. And a cape. They can’t see my pain or my superpowers, but they’d be sure to know I have something if I were wearing a cape. 

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Shakespeare’s Birthday

Every year on April 23rd, my family celebrates Shakespeare’s birthday with cake. I always do some reading from a play or sonnet, but my husband isn’t so fond of that as he is of the cake, so it’s usually either a solitary activity or one I share with my dog. It’s a well-established fact that Abbey the Labby loves the Bard… and cake.

This year, though, my homage will take the form of several hours of rehearsal for a different comedy – Monty Python’s Spamalot – before I am able to indulge in birthday cake. It does seem fitting that the show is a little bawdy, somewhat irreverent, and absolutely hilarious. 

While the precise date of Shakespeare’s birth was not recorded, the date of his baptism was registered as April 26th, 1564. Because it was traditional for babies to be christened three days after they were born, it is generally accepted that William Shakespeare was born on April 23rd. 

In an ironic twist, Shakespeare died on the same date in 1616. Some people think that is awkward, but I think it’s a pretty cool achievement. I’m not sure how common it is for people to die on their birthday, but one of my grandfathers  did, so it’s a feat that has always been a point of interest for me. 

So, here’s to The Bard, his works, and his legacy.

Women in History: Anne Neville

Anne Neville has to be one of the women in history most maligned by Shakespeare.

While it is true that he does portrays her as one of the many victims of Richard III, and doesn’t really say anything terribly nasty about her, it is also undeniable that her reputation is maligned by the way she is portrayed as being quite fickle and very, very gullible.

As I always remind my students, there is a vast difference between actual history and Shakespeare’s play. In fact, Shakespeare entirely misrepresents both the course of events and the relationship between Anne and Richard. 

Not only were their families well known to one another, they were quite closely related. 

Anne grew up at Middleham Castle, the daughter of the 13th Earl of Warwick and his wife, Anne Beauchamp. Anne’s great aunt was Cecily Neville, the wife of Richard, Duke of York, and mother of Richard and his brothers.

When the Duke Of York died, his youngest sons George and  Richard went to live at Middleham with Warwick’s family. Anne’s sister Isabel would later marry George, Duke of Clarence.

Warwick, known as The Kingmaker, played a crucial role in helping his cousin take and hold the throne as the King Edward IV of the House of York during the troubled times of conflict commonly referred to as either The Cousins’ War or the Wars of the Roses. For the first few years of Edward’s reign, Warwick held enormous influence over the young King. 

However, when Warwick tried to negotiate a marriage arrangement for Edward to secure an alliance with France, he discovered that Edward had secretly married Elizabeth Woodville, the widow of Sir John Grey who had been loyal to the Lancastrians. Warwick was not alone in distrusting her and her family, and was profoundly annoyed by Edward’s secret marriage to a woman whom Warwick considered entirely unsuitable. 

At the same time, and quite likely in direct response to Warwick’s contempt for his queen, Edward refused to give his blessing to a proposed union between his brother George, Duke of Clarence, and Warwick’s daughter Isabel, but the pair married anyway with Warwick’s blessing. 

This pitched Warwick and Edward against Edward, and their forces met in battle at Edgecote Moor in 1469. Edward was defeated and taken captive, although released before long, Warwick had sufficient time to reconcile his differences with Margaret of Anjou, the queen of the former Lancastrian King Henry VI. The significance of this is enormous: Warwick and Margaret absolutely hated one another.  

Even so, Warwick’s daughter Anne Neville was betrothed to Margaret’s son Edward of Westminster, the Lancastrian Prince Of Wales,  as a seal of the alliance, and Henry VI was restored to the throne of England two months before Anne and Edward were married in November of 1470. Thus,  Anne became the Princess of Wales and part of the Lancaster dynasty. 

Edward of York, however, was not so easily deposed. He defeated and killed Henry VI in the Battle of Barnet in April 1471, just as Margaret, Edward and Anne were returning to England. Margaret led an army to Tewksbury in May, where her son Edward was killed either during or just after the battle. Edward IV of York then reclaimed the throne as king of England.

Anne, a young widow, took up residence with her sister Isabel and her husband. When Richard asked for and was given consent to marry Anne, the only opposition came from his own brother, who wanted to inherit the entirety of Warwick’s wealth for himself. 

Anne was very willing to marry Richard, and harbored no resentment toward Richard for any of his deeds, perceived or real. They married in 1472 and theirr only son, Edward of Middleham, was born in 1473.

Her relationship with Richard’s mother Cecily was good and her marriage to Richard was happy, although stricken by grief when their son died at the age of ten. Anne and Richard then adopted the young orphaned son of her sister and Clarence, who was also named Edward — of course he was! and of a similar age to their own son. In yet another striking contrast to Shakespeare’s play, the newly adopted boy was named Richard’s heir. 

Anne Neville died at Westminster on 16th March 1485, from an illness that was most likely tuberculosis. She was only in her late twenties, but she had witnessed a very great deal of conflict, grief and turmoil in the kingdom in the course of her life. She was buried in Westminster Abbey, near the High Altar, although the location of her grave was never marked. 

Anne’s story is very different than that told by Shakespeare. Instead, Anne appears to have been a woman who possessed both integrity and backbone, and to have dealt with her trials with considerable resilience. As much as I love the works of the Bard, I do prefer the real story of Anne Neville, and feel sorry that for so many years, she was neither admired nor respected as she deserved to be. 

The Facebook and Instagram Outage Crisis of March 13th, 2019

Despite the crisis that had unfolded overnight as I slept, I woke this morning to find that the sun had risen, gravity still worked, and the earth continued to turn on its axis. 

I had breakfast, got ready for work, and headed into a very busy day. Surprisingly, I found that the work deadlines and professional requirements that were in place yesterday still existed today. 

My students, however, were despondent. 

Them: Facebook is gone! Instagram doesn’t work! 
Me: Imagine how much work you might get done in the meantime!
Them: You’re not very sympathetic. 
Me: And that surprises you because…?
Them: Rolled eyes and sighs. Some lovely moments of dramatic pathos that I shall try to draw on in drama class. 

This left me wondering: what on earth does the world do without Facebook and Instagram? 
It seems the general response is to complain. 

Many of the real social media junkies responded by rushing over to Twitter to complain and commiserate with their followers and the social media world in general. 

In all honesty, some of the responses are pretty funny. 

Others demonstrate that many people are much worse at dealing with this kind of thing than they should be.  
I mean, really, Australia?
Emergency services?
That’s… pathetic.

This one has to be my favourite. It cuts through the whining and combines the sublime and the ridiculous with glorious snark.
Jenny Bean Edwards gets an A+ for World Studies.

Cheer up, folks.
I’m sure Facebook and Instagram and their enormously profitable algorithms will be back soon.

Until then? You may actually be forced to either read a book or have face-to-face conversations with real people.

Alternatively, you can head to twitter and follow me!

No More Tiptoeing Through The Tulips.

I love tulips. They are lovely and graceful, and so colourful!  

My goodness, though, they’re delicate. It doesn’t take much to make a tulip wilt and bend its head to the ground. One might be tempted to think that a flower that needs to have its bulb frozen during winter in order to bloom might be a little more resilient… but apparently not.

I’ve come to the conclusion that a lot of the people in my circles— not all, but a hefty percentage of them— are like tulips. As long as the environment suits them, they are fine, but when they are unhappy for some reason, they just don’t cope. It doesn’t take much to upset the balance: just do something they find confronting. The more brave and nonconformist the act, the stronger the effect.

Don’t get me wrong: I do like most of the people in my circles. 

What I don’t like is having to kowtow to their apparent discomfort about certain things that matter to me, when they demonstrate zero tolerance to who and what I am. 

I am weary of having to live with the perpetual awareness that many people I know don’t mind me being an author as long as I never mention it. Some wouldn’t mind my multiple ear piercings either if I grew my hair longer to cover them. Others don’t mind my tattoos as long as my clothes hide them. They feign politeness when I talk about the theatre company I’m in or the musicals I direct at school, but very few of them have ever bought a ticket and come to see a show. And let’s not even start on how they feel about my political views. 

And yes. Those very different things get exactly the same reaction from a lot of people.

It’s ridiculous, and I’m over it. 

I am not less than them. 
I do not matter less than they do. 
My feelings, thoughts, passions and pursuits matter just as much as theirs do. 
I am as worthy of their interest and respect as they are of mine.

And I am very proud of my poetry and my stories… and of my shows. I’m rather fond of my tattoos and piercings too, for that matter. 

What I write happens to be pretty darned good: all those reviews my books receive from strangers are proof of that. Why should I hide my work under a cloak of secrecy when they can freely discuss being a builder, a butcher, a baker or a candlestick maker?

Nobody looks at them with thinly veiled suspicion. Nobody questions if what they build or make is any good. Nobody asks how much money they make per job. Nobody asks if their kids are real, or if they are any good. 
They are all quite free and welcome to talk about their kids in front of me even though I don’t have any, and I certainly don’t respond as though they are trying to sell me a child.

So, no more tiptoeing around. I won’t be shoving a book in their face at every opportunity — that’s not me — but I’m not going to allow others to pretend they don’t exist, either. They don’t have to read my work, but they will know that I expect their respect and acknowledgment.

I will not allow other people to treat me as less than I am.

I will not allow them to suppress my thoughts and feelings. 
I will call people out on double standards. 
I will refuse to be made to feel small.
I will be as diplomatic and gentle as I can, but I will assert myself.

And if they insist, I will know they are not really my people, and were never really in my circle.

Valentines Day Greetings for Couples Who Have Lived Together for a Very Long Time

It’s Valentines Day. 

I know some people make a big deal of it, but that tends to diminish over the years when a couple have been together for a long time. 

As half of one of those couples, I decided to create some attractive yet practical greetings that might come in handy for couples like us. In the interests of quality assurance, these have been road-tested on my husband, who laughed a bit.

You’re welcome to use any or all of these in order to win favor with your beloved, or just for a bit of fun. 

How Not To Do Book Promotion.

I can’t tell you what kind of book promotion is guaranteed to work, but I can tell you what doesn’t.

Every author I know dreams of finding the perfect ‘set and forget’ book promotion. 

I’m here with some bad news: it doesn’t exist. 

Effective book promotion is about engagement and communication.  It’s letting people know your book exists, what it’s about, and why they should read it… without stuffing it in their face and demanding that they buy it. 

What many people don’t realise is that effectively promoting your book is a process, not an event.  You cannot simply advertise it once, post it on Facebook and/or Twitter, then sit back to wait for the sales to roll in. 

Personally, I’d love to think that everyone I know who sees my book will buy it, and that would flow on to lots of people I don’t know buying it. That isn’t how it works. The people you know are often less likely to be interested and willing to buy and read your book than complete strangers. 

You’ve got to make them interested. Bait the hook the right way, and they’ll bite. But the bait that works for one won’t necessarily work for another. Effectively promoting your book is complex: you’ve really got to be exploring different angles and be patient enough to follow them through to see if they work. If they don’t, you try something different. If they do, that’s great – but that doesn’t mean those same things will work again next time. 

As for what works, I don’t have all the answers. I wish I did. 
I do know what doesn’t work, though. 

Being pushy doesn’t work. Can you imagine how you’d feel if someone wandered around a bookstore holding a card in front of your face that told you where to find the book they wrote? Or if they followed you around, begging you to buy it?

Even worse, actually demanding that people buy your book is a complete turn off. Temper tantrums fall into the same category.

Making every social media post you ever write a “buy my book” post doesn’t work. Put that stuff on your page or author profile, share some of it by all means, but use your personal profile as exactly that. 

Taking advantage of the kindness of others doesn’t work – well, it might for about 30 seconds, but once they’re onto you, even the most supportive friend will back away and wear a necklace made of garlic cloves every time they see you coming. 

Abusing people and talking down to them doesn’t work. Those walls will go up faster than anything you’ve seen before. Not only will they not buy your book, they will tell everyone else what you said, and they won’t buy your book either.

Ignoring or dismissing those who help you along the way is entirely counterproductive. You’ll find yourself quite lonely and without the support you once enjoyed.

Assuming loyalty will not work. Sad to say, some people who know you in person might actually think that anything you write might not be that great. That doesn’t mean it isn’t excellent – but changing their perceptions is tricky. Humans are odd like that, and finding one who believes in you is like the proverbial needle in the haystack. 

The only way to go about it is to build engagement and develop a reputation for excellence

If you’re going to make the grade, your book needs to be top shelf: professionally edited, a well-designed cover, clean formatting, and engaging content. Without those things, your book might be good, but it’s competing with a market full of other good books that have had more time and effort invested in them to make them attractive to readers. 

It takes time, energy and commitment. Sometimes it takes sheer grit and determination, but you’ve got to manage all that without anyone really seeing that part of the job. 

But if you’ve got a story to tell, or a message to communicate to the world, there’s nothing stopping you. Just make sure you do it well

That will give you the best possible chance of promoting your book effectively and successfully. 

What They’re Really Saying.

It should come as no surprise that when you’ve been listening to people say the same thing for a while, you get better at understanding what they really mean. 

Person Z. 
Take, for example, a young woman who approaches her friends and family members and says something like, “Hey, so, I’m having a fancy brand-name plasticware/linenware/healthy and beauty product/accessory/clothing party at my house in a couple of weeks, and I really hope you’ll come.” 

What she’s really saying: Option A: I got sucked into one of these parties by relative/friend X, and she looked so hopeful that someone would book a party so she’d get some reward, and my mouth was open before my brain could stop it. 

What she’s really saying: Option B: There’s a thing this company makes, and I’d really like to have it, but it’s expensive so I’m having a party and anything you buy will help me get it cheaper. 

I’ve been on both ends of the equation, and can totally sympathise. It’s fair to say I’ve smiled and nodded through a whole bunch of those evenings, and even bought a thing or three, to help friends and family members out. From time to time, I’ve also been the Option A person. 

Person Y.
In another example, a child approaches family members and friends and explains that the school is selling chocolates/holding a “fun run”/doing some kind of suffer-a-thon as fundraising for a new toilet block so the kids can “go” comfortably during breaks. 

What the child is really saying: Option A: The school insists that I must do this thing and there’s no way out of it, so please give me some money toward it so it’s not for nothing. 

What the child is really saying: Option B: There are prizes for doing this, and I really want the floppitywoppity that you can only get if you raise $5000, so please give me some money to give me a fair chance at winning one. 
Again, I’ve helped more than one kid out of the hole. I don’t know if any of them ever got the floppitywoppity, but I know I have helped to build more than one toilet block in my time. 

Person X.
Then, there’s the Indie author. Actually, it could be any Indie creative – an artist, musician, or crafter. I just decided to use an author as the example here, because that enables me to draw on my own experience again.
Person X has a passion for writing, a message they want to get out to the world, and they finally get their book published. They tell their friends and family members that they have a book out, and they’re about to tell them what it’s about…

What the author is really saying: Option A: I finally fulfilled my dream. Aren’t you happy for me? 

What the author is really saying: Option B: I did a thing! I may never become a millionaire, but I did a thing! Please proud of me!

What the author is really saying: Option C: Remember all those times I supported your party plan things? And your fun runs? And your kids’ school toilet blocks? And… 

…But as Person X talks, there are virtual crickets chirping, and eyes looking nervously at the door, and people checking their phones, and remembering appointments they need to be at, and…
What the others are really saying: Option A: Well, this is awkward… who ever thought he/she was brave enough to get out there and do the thing! 
What the others are really saying: Option B: Yeah, we know you’ve supported us and our kids, but we’d prefer not to mention that now, because I would rather put my cash toward fancy plastic ware/linen/clothes/beauty products/accessories or a gym membership than some book by someone nobody’s ever heard of.

What the others are really saying: Option C: What the heck are we supposed to do now? We hope he’s not going to ask us to actually read it… maybe if I don’t ask what it’s about, he’ll stop talking about it.

What the others are really saying: Option D: But… you’re my brother/sister/cousin/relative/friend… how could a book you wrote even be any good? A bit full of yourself, aren’t you?

Person W. 
The final example is the one person in the room who hugs you and says, “Awesome! That’s fantastic! I’ll buy your book! How much do you want for it? You’ll sign it for me, won’t you? I can’t wait to tell my friends what you’ve done!”

What they’re really saying: Option A: I’m proud of you, and I’m on your team. 

What they’re really saying: Option B: I’ll probably never read it, but I’m proud of you, and I’m on your team.

What they’re really saying: Option C: “Awesome! That’s fantastic! I’ll buy your book! How much do you want for it? You’ll sign it for me, won’t you? I can’t wait to tell my friends what you’ve done!” then looking over their shoulder with a glare at the rest of the people in the room who were too selfish to do or say anything. 

The moral of the story: Option A: 
I’m really thankful for every ‘Person W’ in my life. I had no idea when I embarked on my journey as an Indie author that it would hurt so much to know there were so many Zs and Ys in my circles, but I also had no idea how wonderful it would be to know who the Ws were, and that they were on my team.  

The moral of the story: Option B: 
Always be a W. Even if you never read the book, be a W. 

That’s Jo, not Joy.

This weekend we’re attending a family reunion in Anglesea. Just before lunch was served, we sat in a room full of relatives and listened as one of our cousins shared a reflection on relationships among family.

He said, “Think about tthe friendships and relationships you have. Consider the negative, the strained, and the unhealthy…”

“Never mind about the unhealthy,” I muttered. The cousin sitting beside me laughed.

“Can you imagine if they all went Marie Kondo on me?” I continued.

“Does she bring me joy?”
“No, she brings sarcasm, snark, inappropriate humour and painful honesty.”

Seriously, I’d be here with maybe three people.

The Story of My Life.

If a book were to be written of your life, what would the title be?

This question was asked recently in one of the authors’ groups I belong to on Facebook:

Slip Wrong Error Oops Accidental Slip Mistake

The answer came to me in a blinding flash of little-appreciated genius.

Slip Wrong Error Oops Accidental Slip Mistake

Alternate title: Crap That Wasn’t Meant To Happen.

Precis: A woman goes through life generally trying to do the right thing, but situations and people keep backfiring on her. This is further complicated by her own big mouth and her failure to learn the basics of human nature.

Tone: Initially comical, tending toward darkness and cynicism as the story progresses.

Chapter titles:

  1. How Not To Fit In… Ever
  2. How To Lose A Friend, Simply By Being Yourself
  3. Dairy Farming: The Idyllic Life
  4. How To Injure Both Hands At The Same Time
  5. How To Lose A Friend By Standing Up For What You Believe In
  6. Be A Teacher: They Only Work From 8.30 to 4, And Get All Those Holidays!
  7. The Sneaky Ways Awful People Conceal What They Really Are
  8. Apparently, I’m A Slow Learner
  9. How To Get A Tropical Disease 2500km South Of The Tropics
  10. Fibromyalgia: The Gift That Keeps On Giving
  11. No, They Will Never Understand That ‘Introvert’ and ‘Shy’ Are Different Things
  12. A Published Author: How Nice! You Must Be Rich.
  13. Oh, You’re An Author? I Don’t Read.
  14. Needles In The Haystack: There Are Actually Nice People Out There
  15. ‘One In A Million’: A Ridiculously Optimistic Ratio
  16. How To Get A Knife Out Of Your Back
  17. Why You Should Never Give That Knife To Someone Else
  18. When Adding Extended Family On Social Media Backfires
  19. Old Friends Can Turn On You, Too!
  20. Why They Can Post Whatever They Want To On Facebook, But You Can’t
  21. Why Doing Something Nice For Someone Is Often A Really Bad Idea
  22. The Block Function: How To Slam That Door Well And Truly Shut
  23. How To Offend Your Family And Friends By Succeeding
  24. Why You Should Never Assume That People Are As Sincere As You Are
  25. Vulnerability Explained: Discovering You Are An Empath
  26. The Achilles Tendon: ‘Heel’ and ‘Heal’ Are Not The Same Thing
  27. Still Hobbling? There Goes Your Other Ankle.

I know. It will never sell.

Marketing that kind of stuff is exhausting – I should know.  It is, after all, the story of my life.