The Masseuse who pulled my Arm Out

Many of us bendies will relate to this! In fact the same thing happened to me – just replace the word masseuse with anaesthetist and the salon with operating theatre.  You get the idea!


Life with a disability can sometimes give rise to unspoken questions and sensitivities, but amid the awkwardness there can be humour. The following is an edited version of a sketch by Angela Clarke who has Ehlers-Danlos syndrome, delivered for the BBC at the Edinburgh Fringe Festival.

Illustration of Angela Clarke's arm dislocating due to Ehlers-Danlos syndrome

Image by Sarah Dousse, BBC.COM

I was away at a fancy spa and thought I’d indulge in a nice relaxing massage as a treat.

The softly spoken therapist, who was called something ethereal and calming like Summer or Melody or Zinfandel Blush, told me she would be using an aromatherapy oil of lavender picked by organically trained squirrels and mermaid tears.

The room was painted in calming shades of rice pudding, scented candles flickered around me and music, which sounded like whales fornicating, played in the background.

I was so preoccupied with getting onto the high massage table that I forgot to mention a vital piece of information – I have an invisible disability. Big mistake.

I have Ehlers-Danlos syndrome (EDS), a debilitating condition which affects connective tissue like skin and tendons and, among other things, means I injure easily.

It’s genetic. I got it from my mum. Worst birthday present ever. While some people with EDS have no complications, other than being super-flexible, I get chronic pain, frequent dislocations, and mobility issues. Mum, on the other hand, got straight into advanced yoga…….

………

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Image by Sarah Dousse, BBC.COM

So there I am, blissed out on the massage table. Zinfandel Blush has marinated me like a chicken breast. The whales are climaxing in the background, and I’m drifting off to sleep.

She runs her oil-covered hands down my arm and gives it a gentle tug to stretch out my stiff shoulder, but it just keeps coming, until pop! It comes clean out of the socket. Dislocated.

Believe me, it gets funnier! For the complete, hilarious post go here – BBC Ouch!

Monday Magic – Inspiring Blogs for You!

Welcome Pain Pals!

I have had various personal posts floating around my head, but am struggling with the key board as am on day 6 of a shoulder dislocation! Fellow bendies will understand…..everything in my shoulder is so stretched that it just keeps slipping out! Avoiding A&E as I know how hard they pulled it last time to relocate it and I think it just makes it worse in EDS as this stretches already stretched ligaments & muscles!!  So a sling and rest it is….must say my  neck, shoulder and arm feel pretty tired, in fact I do.

Enough of that now as I just want to acknowledge that 2 fellow bloggers have nominated me for awards recently and I haven’t followed through..yet!  The wonderful Bipolar Cat  at High Risk blog has nominated me for The Mystery Blogger Award and the equally wonderful Terri at Reclaiming Hope has nominated me for the Sunshine blogger award – thank you ladies so much and I promise that I will post properly!  I think that being recognised for the little that I do in such a massive blogging community is quite overwhelming and humbling.Monday Magic

 

You all know that I love connecting with other bloggers, meeting a making new friends, and there is no better way than linking with new posts.  So for our usual Monday slot – sit back, relax and enjoy some inspiring posts – varying from a review for beautiful eyshadows to organising ourselves as bloggers to a medical text about proprioception!

 

 

http://chronicallywhole.com/learned-simple-life-lesson-pause-perspective/

https://amigraineurslife.wordpress.com/2017/07/04/i-have-lost-all-faith-trust-and-confidence-in-our-medical-community/

http://www.mastattack.org/2017/08/stolen-summers/

http://www.mamasick.com/2017/08/what-is-dysthymia/

http://www.lazythoughts.co.uk/2017/08/how-i-use-my-bullet-journal.html/

https://justplainmarie.ca/self-reliance-important/

https://dgkayewriter.com/guest-feature-madelyn-griffith-haynie-power-reading/

https://bendybeauty.com/2017/08/18/opv-yemoja-eyeshadow-palette-review-swatches/?fref=gc

https://hannahelizasite.wordpress.com/2017/08/20/going-back-to-work-week-one/

http://www.doctorschierling.com/blog/fascia-as-a-proprioceptive-organ-and-its-relationship-to-chronic-pain

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Image from Bendy Beauty blog

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©Creative Commons by Mysticartdesign 

Please like, comment and follow these great bloggers – make someone’s day!

Claire x

Ehlers Danlos in the news!

I just want to share a couple of stories with you that both centre on young ladies living with types of EDS.  Of course these pieces always jump out at me, but I believe that whether you have EDS, another chronic illness or are reading this as, hopefully, a fit and well body that these stories will raise a smile!

The first features a beautiful 11 year old and her canine best friend,

Assistance Dog Helps 11-Year-Old Who Can’t Stand on Her Own Accomplish Her Dreams

POSTED ON AUGUST 9, 2017 AT 2:04PM EDT

At just seven years old, LanDan Olivia was diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome.  The effects of these syndromes make it hard for LanDan Olivia to stand on her own and often restrict her to a wheelchair. 

But LanDan Olivia doesn’t feel restricted, and that is in big part due to her assistance dog and best friend Perkins, who keeps the 11-year-old smiling and active every day.

 The road to Perkins started shortly after LanDan’s diagnosis. She and her mom reached out to Canine Companions for Independence for an assistance dog to help LanDan Olivia conquer the everyday tasks that had now become a struggle for her.

“I was in my wheelchair, and it was really hard to get around, and open doors and drawers, and close them, and I would drop things and couldn’t pick them up. Sometimes even emotionally, I also felt like I needed help with things that a person could not understand,” she told PEOPLE. “Perkins just feels me. I needed someone like Perkins in my life.”

After two years of waiting, LanDan Olivia received the call she’d been dreaming of from Canine Companions for Independence, an invitation to Team Training. There, Perkins was waiting to meet his future owner and best buddy, having already gone through a year and a half of basic training, so they could begin working on a relationship that catered to LanDan Olivia’s specific needs.

To read the full story visit Working Dogs

My second story features Vascular Ehlers Danlos Syndrome, which is probably carries the highest risk of fatality.  Planning to start a family when you carry a genetic condition is a minefield ordinarily, but if the pregnancy itself could put the mother’s life at risk due to said condition another can of worms waits to be opened.  This is how one couple coped.

Leyla was desperate to be a mother, but being pregnant could kill her… Which is why she used a surrogate even though she’s able to conceive

  • For Leyla Hutchings it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby
  • Baby Zeki was born to his surrogate mother Rachael Coleman in 
  • 400 surrogate babies were registered in UK in 2016 – four times 2011 statistics

When Leyla Hutchings takes her three-year-old son Zeki to see his ‘Auntie’ Rachael, he’s always excited to play with her three children, whom he treats as his cousins.

Yet their relationship is much more complex than that.

They’re not genetically related, but Zeki has a lot in common with Daisy, nine, Jack, seven, and Max, five. For ‘Auntie’ Rachael is not a biological relation — she simply gave birth to him.

Zeki is a surrogate child, the result of a sympathetic mother’s urge to help another woman have a child.

For Londoner Leyla Hutchings (pictured with surrogate mother Rachael Coleman and baby Zeki) doctors had told her she would risk her life by carrying a baby

For Londoner Leyla Hutchings (pictured with surrogate mother Rachael Coleman and baby Zeki) doctors had told her she would risk her life by carrying a baby

Last year, 400 surrogate babies were registered in the UK — nearly four times as many as in 2011 — due mainly to increased awareness that surrogacy is a possibility for childless couples.

According to the charity Surrogacy UK, common reasons for using a surrogate include repeated miscarriages, failed IVF treatments or early menopause, often as a result of cancer treatment. And one in 5,000 women has no womb or cervix.

But Leyla’s case was different — it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby.

At the age of 26, she was diagnosed with an aneurysm — a bulge in a major blood vessel, in her case in the leg, which, if it burst, could cause fatal internal bleeding.

Leyla was on the Tube on her way to work at a London law firm when she collapsed with sudden pain. Rushed to hospital, she was diagnosed with vascular Ehlers-Danlos syndrome (EDS) — a rare genetic condition.

Read more: http://www.dailymail.co.uk/news/article-4790834/Mother-uses-surrogate-s-able-conceive.html#ixzz4qE3uAGYA
Follow us: @MailOnline on Twitter | DailyMail on Facebook

I hope that these stories have brought a smile to your face.

Monday Magic – Inspiring Blogs for You!

Hello and Happy Monday!  I hope that you have all enjoyed a relaxing weekend and are ready to face the week ahead.

This past week has offered us a smorgasbord on the world stage from the battle of words between the White House and North Korea to the retirement of possibly the greatest athlete to date, Usain Bolt.  As America’s top military officials arrive in South Korea and the leaders of China and Japan speak out publicly, let us all hope that this becomes no more than a war of words, not only for the the people of Guam, but for the world at large.

Over the last week our household has been glued to the IAAF World Athletics Championships. There have been some amazing highs and some breathtaking lows.  Athletics on the international stage is experiencing its own war at the moment: doping scandals, athletes fighting to prove that they are “clean” and able to compete,  medals being stripped and bans imposed.  The public made their feelings very clear with the booing of US athlete Justin Gatlin – an runner who has served 2 drug related suspensions and has become the representative bogeyman of all those accused of doping.

But we can also view many aspects of the championships as beacons of light in our allegory for world peace.  The final track races of sporting legends Usain Bolt and Mo Farah didn’t end as fairytales do, but instead showed these remarkable men to be human. They both won medals – just not the colour that everyone hoped for.  If Farah’s races had been the other way around and he had won his silver first and the gold medal last would this really have altered his achievements – or just the way his final race was reported in the media.  I don’t believe that anyone wanted to see Bolt fall in pain to the track rather than finishing his final race, but he showed his strength of character by returning to take a final bow for his international fans as the games closed.  Out with the old guard….but in with the new.  So many talented young people have sprung onto the world stage this week showing a spirit and enthusiasm that fires up even a chronic illness old crone like me!  There have been inspiring stories of overcoming injury and surgery, tears of disappointment and tears of joy.  For me a really memorable moment was when the Syrian high jumper realised that he had won a bronze medal, the first ever World Championship medal for his country.  The disbelief and ecstasy on his face told such a story of this man who lives and trains in war torn Damascus.  What an inspiration to us all!

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Bronze High jump World Champion Majd Eddin Ghazal Picture from IAAF.org

You must have wondered where that was all leading, but it can only be to one place – one set of inspirational people to another!  So grab a drink, sit down and allow yourself some “me time” finding and exploring some inspiring posts from some more inspirational bloggers!

http://blog.michellerosado.com/2017/07/5-benefits-of-meditation/

https://yadadarcyyada.com/2017/06/02/nobody-puts-bloggers-in-a-corner/

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http://blog.mangohealth.com/post/159941981912/dont-suffer-in-silence-why-talking-about-pain-is

https://wheelescapades.com/2016/10/31/wimpole-estate-down-on-the-farm/

http://www.writersam.co.uk/post/163802388755/the-power-and-purpose-of-blogging-and-why-you

http://www.navigatingthestorms.com/coping-skills/you-respond-plans-change-unexpectedly/

https://intrestinalfortitude.wordpress.com/2017/08/13/letter-to-my-surgeon/

https://laurachamberlain.co.uk/2017/08/07/echo-prescription-app-review-uk-an-app-to-order-nhs-prescriptions-to-your-door/

http://www.diseasecantstopme.com/5-second-rule/

https://cozyclothesblog.com/2017/06/14/what-if/#more-1312

Please remember to like, comment and even share if you enjoy these posts,

Claire x

Monday Magic

 

 

Meet and Greet: 8/12/17

Meet ‘n’ Greet time over on Dream Big! Join us….

Dream Big, Dream Often

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It’s the bimonthly Meet and Greet everyone!! Strap on your party shoes and join the fun!

Ok so here are the rules:

  1. Leave a link to your page or post in the comments of this post.
  2. Reblog this post. It helps you, it helps me, it helps everyone!
  3. Edit your reblog post and add tags.
  4. Feel free to leave your link multiple times! It is okay to update your link for more exposure every day if you want. It is up to you!

  5. Share this post on social media. Many of my non-blogger friends love that I put the Meet n Greet on Facebook and Twitter because they find new blogs to follow.

See ya on Monday!!

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Models of Diversity – Challenging Stereotypes

I recently came across this young lady Selina Towers and was initially drawn to her story as she lives with the same genetic condition that I have.  When I read a little more I couldn’t help but be struck by her zest for life and her desire to raise awareness of the beauty of all body types…..

Only this morning BBC Breakfast covered the story of former Vogue editor Alexandra Shulman who has this week posted a selfie wearing a bikini.  No great shocks there, except that the picture is unfiltered and Ms Shulman aged 59 looks like any middle aged lady on her hols – or rather she does not resemble an airbrushed model.  Do these “perfect” images often published on social media influence the body image of those viewing them?  Last week actress Kate Beckinsale spoke about giving positive advice to her daughter on body image and the importance of not trying to live up to an impossible stereotype. In Australia a new campaign targeting parents of pre school age girls, aims to celebrate body shape and size diversity, celebrate skills and personality traits, as well as teaching parents healthy language around food and bodies.

In this article Selina looks at disability within the modelling and fashion world, and how disabled models could challenge stereotypes, if given a chance.

Are Disabled Only Runways A Good Way To Showcase Disabled Models?

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Selina Towers – photo from Models of Diversity

A year ago, I wouldn’t really have thought about it, I would have just thought it was an absolutely brilliant thing bringing to light the beautiful disabled models that we rarely see on the runway but then, I didn’t truly understand how it felt from a disabled person’s point of view.

I was born with a condition called Ehlers-Danlos Syndrome which didn’t start to really affect me until I was around 10 years old, but even then it was only the odd dislocation here and there. Although it did affect my every day life and limited what I could do, I didn’t really consider myself as having a disability, just some fairly cool party tricks where I could bend bits of me that really shouldn’t bend that far! However last year, I had an unfortunate bout of flare ups with unfortunately led to me having to become reliant on a wheelchair.

For the full article go to Models of Diversity

How to overcome low self-esteem

Overcoming low self esteem is so relevant in this age of perfect social media posts, selfies and constant access to each others’ social profiles. It is also very relevant when living with illness or disability or any major life change that robs you of self esteem……have a read of this post on QuipNip blog.

QUIPNIP

How to overcome low self-esteem

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The way we see ourselves, judge ourselves determines our self-esteem. People with good self-esteem are happier compared to people with a poor self-esteem. What exactly sets these two types of people apart? Is it their successful lives or achievements that give them a positive self-image? But then aren’t these things by-products of a healthy self-esteem?

You might think, “I could have a successful career, too, had I little confidence in myself” or “I could grab that opportunity too had I seen myself worthy enough” but you think that you “suck”. The truth is everybody sucks, but they are still doing fine!

“Why?”, you would ask. The answer is, they accept themselves as who they are, embracing their strengths and accepting their weaknesses- that’s where the difference lies.

Having a good self-esteem is not an easy task, but it’s not impossible, either. The first step to…

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Why it Feels Like Suicide is Always an Option – from A Chronic Voice

This is an emotive post shared by Sheryl from A Chronic Voice blog.  She gives us a Trigger Warning that this post is about chronic illness and thoughts on suicide – it may be potentially triggering.  For help contact:

suicidenums

The Fears of Aging with Sickness

While I did not ask others with chronic illness how they feel about this, I know that many of us share the same sentiments. It feels like suicide is always an option on the table. And putting suicide aside, the number one cause of death in the world is due to chronic illness as well.

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We are living out that rainy day scenario others are saving up for. Modern medicine combined with pieces of complementary therapies is like an umbrella. But one that is never big enough to shield us completely from the downpour. My lovely caregivers are also getting older by the day, and everyone grows naturally weaker with age.

To read the full post visit A Chronic Voice

Monday Magic – Inspiring Blogs for You

Monday Magic

Here we are a week into August – and it turns out that what my grandma used to say is true – time really does move faster the older you get!  Where has the year gone? In fact where have all the years gone?

 

 

 

 

I have just taken up the Chair of the alumni committee for my old school – whilst I’ve been on the committee for a few years the shoes I’m filling feel enormous as they were previously worn by my old chemistry teacher – one of my first official roles will be at the 30 year reunion for my own year group in September.  A couple of us are currently tracking down classmates – stalking people on Facebook, Linked In etc according to my kids – and it has unleashed so many memories.

Can it really be 30 years since we left school?  Some of this group know that I am now disabled, but it is going to be a really big deal attending this event in my wheelchair and answering the questions!  I think when I give a little speech at the beginning standing up, I might say that the wheels are to accommodate my high heels!

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Who are those youngsters? Aged about 18 – Duncan in his Rick Astley days!!  

 

 

 

 

 

 

 

 

 

 

 

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The current 18 year old!

 

 

The funny thing is that despite all the physical changes in my body, the family I now have, the career I loved and lost, the exhaustion of life with chronic illness, inside I can still feel that 18 year old.  My own 18 year old just looks at me, shakes his head and tells me I am old – ha, ha, ha, none of us believe it will ever happen do we?

 

 

 

 

 

 

Playing 18

Mum and friends playing at 18 year olds!

So what better way to get over the feeling of being past it, than to find some inspiring blog posts to inject some zest today!  Kick off your shoes, grab a cuppa and settle down for some fantastic reads – I hope you enjoy this week’s gems as much as I have!

https://movementdisordersblog.wordpress.com/2017/07/31/skimming-through/

https://chronicyogiblog.wordpress.com/2017/07/31/what-if-it-stays-this-bad-chronic-illness-and-managing-the-what-ifs-spoonie-yoga-day-8/

https://brainlessblogger.net/2017/07/28/managing-work-with-chronic-pain/

https://wheelescapades.wordpress.com/2017/04/05/naidex-the-nec-birmingham/

http://jessicagimeno.com/how-chester-benningtons-music-helped-me-survive-depression-abuse-chronic-pain/

https://kellyontherun.com/2017/07/11/perception-icebergs/

http://www.goldengraine.com/2017/07/26/disabled-full-time-job/

http://www.chronicallypositivemom.com/the-last-lecture-inspiration-for-everyone/

http://www.themerrymomma.com/2017/08/3-ways-building-closer-family/

https://thoughtsinamoment.com/2017/08/03/biofeedback-therapy-with-mindful-nutrition-wellness/

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From Chronically Positive Mom blog

Remember to comment, like, share and make a blogger happy!

Claire x

 

 

To conclude her Book Blog Tour – Q&A with author Laura Trentham

Earlier this week I posted my review for new novel Leave the Night On and now to celebrate and conclude her blog tour, here is a fantastic Q&A with author Laura Trentham.

 

  1. What inspired the novel plot?

Plots are strange things for me…I can rarely pinpoint anything in particular that triggers an idea. They usually pop into my head when I doing something else entirely like making dinner of driving the kids around.

  1. What’s your favorite scene? Why?

I love the scene where Sutton gets drunk and finally propositions Wyatt for real. I hope it’s funny and sexy and the reader can feel her mortification when she thinks he turns her down.

  1. Who’s your favorite character? Why?

Wyatt. He’s sexy and tough, but also incredibly sweet. He loves his family and would do anything for them. My heroes are complex and most definitely not a-holes.

  1. Any other books in the pipeline?

Two more Cottonbloom books! WHEN THE STARS COME OUT (1/30/2018) features Wyatt’s twin brother Jackson. SET THE NIGHT ON FIRE (8/2018) is Mack Abbott’s book. Also, sometime in the fall of 2018, I’ll have a military themed romance/women’s fiction book releasing! I’m super excited about it too.

  1. What led you to write in this genre over others?

Actually, my first books were historical romances, and I’ll be re-releasing two and adding a new book in my historical Spies and Lovers series this fall (Sept/Nov 2017). But, while the historical books were on submission with publishers, my agent suggested I try a contemporary. It sold to St. Martin’s Press only a couple of months after my historicals sold. I’ve set all my contemporaries in the American south because that’s where I was born and have lived most of my life. I understand the way southerners talk and think.

  1. Do you have a favorite book and author?

I’m going to have to throw it back to Mary Stewart as my favorite author. I quite often reread her books. But as far as which book I’ve reread the most, it would have to be Julie Garwood’s The Bride.

  1. Why and how did you decide you wanted to write for a living?

I’ve always been an avid reader, but I didn’t even consider writing until five years ago. My daughter started preschool, and going back to work doing what I went to school for (chemical engineering) wasn’t feasible. I sat down one morning and started writing. At first, I didn’t even tell my husband what I was doing. I won’t lie, it took a lot of work and rewrites to get those first manuscripts good enough. But, eventually, I signed with an agent and sold them both.

  1. What’s your favorite way to relax?

Reading! (I know that’s a shocker:) I also enjoy the mindlessness of games on my phone.

  1. What’s your favorite food?

Fried rice! I just learned to make it at home. My rice cooker is my second favorite appliance (behind my coffee maker!)

  1. Sounds like Sutton’s fiancé’s a cheating…um…cheats.  Why did you decide to use that as an aspect of your story?

Andrew is a secondary character in the first Cottonbloom trilogy about the Fournette siblings. He’s kind of a slime ball in those books too.

  1. Tell us something about Wyatt that we don’t learn from the book.

He likes to wear women’s underwear. Just kidding!! Actually, I’m drawing a blank, he’s an open, honest kind of man.

  1. This book is set in Mississippi.  Does this location contribute to the story in some way?

It’s actually set half in Mississippi and half in Louisiana. I wanted a southern location. But, I also envisioned a twist on the wrong side of the tracks story. In Cottonbloom, the more affluent live on the Mississippi side and the blue-collar working class live on the Louisiana side. I wanted that push-pull and rivalry between the two. It informs the relationships between my couples.

Thanks Laura for a great new read!  I will be looking out for some of the other Cottonbloom books….quite fancy finding out what happens to those other Abbott boys!

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