Monday Magic – Inspiring Blogs for You!

Monday Magic

Good Morning, all!  Hope that those of you enjoying a Bank Holiday are having a fantastic day, and that everyone else has had a great weekend!

The weather is beautiful here and we have a family BBQ planned for later in the day – coincidental, but it just happens to be my parents 52nd wedding anniversary.  Dad would tell you that he would get less for a life sentence!!

A very good friend contacted me earlier in the week with the sad news that her mum had died.  She has been living in a nursing home for several years now and has gradually deteriorated, but in recent weeks she took a turn for the worse with a bad chest infection and just wasn’t strong enough to fight it. This week has been very hard for my friend, her brother & sister, and particularly her dad.  They had been married over 60 years.  It struck me that no matter how old or how sick a loved one is, the sense of loss at a death just can’t be anticipated.

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Beautiful bank holiday Monday!

When I received that message my own mum was here and I should probably point out that we have a great relationship.  She has been staying with me whilst the family have been away and has effectively been my carer again! Talk about turning the clock back, becoming the child again.  I felt so dependent physically and even a short car journey left me struggling, but it never fails to amaze me how that parent/child psychological bond is always there.  No matter how old you are,  it is always possible to feel like a teen again! A naughty teen at times!  Seriously though, thanks mum, I couldn’t have managed without you.

This week I have been able to spend time finding new groups and meeting new bloggers online.  So the inspiring blog posts I have for you are from a mixture of sources – one of them being the Facebook group Big Up Your Blog! – run by Suzie from “Suzie Speaks”.  I have included her post about self censorship on our blogs – it is something all bloggers should read, no matter what your content matter. I think that I have probably failed miserably on all counts!!  There is also a beautiful poem about a relationship break up, the role we play ins supporting new mothers emotionally and a shout out for a new disability campaign for parents later this year.

So as usual, grab a coffee, sit back and enjoy…..

https://suzie81speaks.com/2017/07/08/should-you-self-censor-your-personal-blog/

https://fancypaperblog.wordpress.com/2017/08/22/mental-health-be-kinder-to-new-mothers/?fref=gc

https://iwillnotliveinvain.wordpress.com/2017/08/26/vaguely-nauseated/

https://mindovermetablog.wordpress.com/2017/02/22/why-its-sometimes-good-to-look-back/

https://jellified.wordpress.com/2017/08/25/from-the-start/

https://addandsomuchmore.com/about-the-name-add/

https://nolightwithoutdarkness.com/2017/08/23/when-your-mental-health-affects-your-job/

https://fibromyalgia-chronic-pain.blogspot.co.uk/2017/01/to-reduce-stress-and-pain-in-your-hands.html

https://cfsmeandkingdomliving.wordpress.com/2017/08/27/redefining-the-dark/

http://blossomandcompany.co.uk/italkdisability-campaign/

Please remember to comment, check out other posts on these blogs and find a new writer to follow,

Claire x

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SHE….being invincible in pain

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My lovely girl drew this image for me of our pain, different for us both but with the same underlying genetic cause, and these words by poet Ariana Dancu seemed to fit perfectly in rising above the flames of pain.

It has been a tricky week as the family visited my husband’s parents,  but I was too unwell, sporting a chronic dislocation & increased pain, to make the long car journey.  Instead I remained at home where I was able to relax, stay in my PJs and binge watch Netflix, but had to rely on my parents to look after me.  Talk about feeling like a teenager again……

Lucy’s picture really depicts how my different pains have been all consuming this week….and yes, I am still sporting a snazzy velcro sling!  Hopefully there will be a real post tomorrow!

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:

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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

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