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!

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.

3 OF THE BEST CHRONIC PAIN SUPPORT WEBSITES IN THE UK…from Barbara at Back Pain Blog UK

Having suffered with chronic pain for many years, I know first hand that at times it can feel like there is little support out there for sufferers.  It was after using some of these websites myself, that I was inspired to start writing Pain Pals, to document my journey as I had my spinal cord stimulator trial for the chronic pain due to nerve root damage in my back.  My underlying chronic illness, Ehlers Danlos syndrome, has caused me even further deterioration and pain……meaning that I continue to look for support in day to day life.

This blog post from Barbara details some great sites that might be able to offer you or a loved one pain support:

My first choice has to be A Way With Pain – I was first introduced to this site back in 2013 after seeing an article on Julia Kelly a chronic pain sufferer, and founder of the charity A Way With Pain . In her Father’s words about Julia’s chronic pain,” Whilst the levels of pain and financial pressures have not changed, her positivity, self- confidence, and self- esteem are slowly returning. …..

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To read the full post visit :Back Pain Blog UK

The Princess and the Pea – from little Princess Rubie at My Stripy Life Blog

I have to share this post with you from My Stripy Life blog – a fellow EDS zebra.  Except part of this post has been written by 7 year old Rubie and incorporates a review of her favourite story.  Enjoy……

The story tells of a prince who wants to marry a princess, but is having difficulty finding a suitable wife.  One stormy night a young woman drenched with rain seeks shelter in the prince’s castle. She claims to be a princess, so the prince’s mother decides to test their unexpected guest by placing a pea in the bed she is offered for the night.  She covers the bed in 20 mattresses and 20 feather-beds. In the morning she asks the princess how she slept.  ……..

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Picture from My Stripy Life

For decades I have related to the story of the Princess and the Pea.  As a child I was always tossing and turning in bed at night uncomfortable…………Now, I have my own princess who feels every bump in her bed and is finding parallels with this story and her own life.  When she had to complete a book review for homework this week on her favourite traditional tale she immediately chose this story……”

To read Rubie’s review please follow this link:  Rubie’s review of The Princess and the Pea

The Elastic Girl – article from Emily Jane O’Dell

I found this article on Aljazeera.com by Emily Jane O’Dell on living with Ehlers Danlos syndrome – so good to see fellow zebras thriving out there!

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Emily Jane O’Dell teaches at Sultan Qaboos University in the Sultanate of Oman.

Muscat, Oman – I am elastic girl. I’m as stretchy as they come, but I’m coming undone. My joints keep dislocating. Tendons tearing, ligaments loosening. Even my voice box is leaping out of place. What’s a girl with messed up glue to do?

“You should join the circus!” adults used to say when I showed them contortionist tricks as a child. Back then, I thought my freakish flexibility was a superpower. But my superhero dreams were dashed when I got hit by a bus while riding my bike in Harlem, learning while in recovery that I have Ehlers-Danlos Syndrome – a rare and incurable connective tissue disorder that can cause dislocating joints, rupturing organs, blindness, and even death from cardiac defects.

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I live now in awe of what the body can do, and amazed by how a soul can soldier on despite the body being so broken’ [Photo courtesy of Eddie Chu]

My limber limbs once primed me for master ballet classes with Gelsey Kirkland and All-State varsity sports titles. Reaching the highest levels of Ashtanga yoga was a breeze. But what was once a blessing has become more like a curse.

Disjointed

Dozens of times in a day, my bones would slip from their sockets – my elbows when I swim, my fingers when I type, my shoulders when I open a door. I almost choked to death on my own voice box last summer when I was swimming backstroke and my larynx ripped out of place. Left in its wake – a paralysed vocal cord.

Call me Humpty Dumpty for I am beyond repair. Though I am in need of a number of surgeries, surgeons do not dare to suture my widespread tears. The risk of cutting into my cursed cartilage and stitching up my slow-healing skin is too great. I bear many wounds that will never heal.

I landed in a hospital in Turkmenistan a few years ago after my hips tore out of place while I was researching Sufism and shamanism on the border with Iran. “Eta elastichniya deyavooshka,” the Soviet-trained doctors said in Russian – “This is an elastic girl”.

For full article go to : The Elastic Girl: Living with Ehlers Danlos Syndrome

Monday Magic – Inspiring Blogs for You

Monday MagicWe are all here in the UK, after a very difficult week, enjoying another bank holiday Monday.  I don’t want to write anything other than our thoughts and love are with everyone in Manchester.

This week the youngest household zebra has been away on a German exchange trip and has had the most fantastic time.  I must give so much credit and thanks to the staff and her host families – particularly for quietly acknowledging that her joint and pain problems might impact upon some of the visits.  I think that the visit to caves involved a serious number of steps!!  She has returned on a high, despite having her bag & mobile phone stolen, and the whole group of English and German teens are still chatting constantly on a group chat (you can imagine – “how quickly can I get a new sim card, dad??”)…..watch out for the return visits in October.

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Today also marks the last Monday in May and so the last in Ehlers Danlos Awareness month.  I am shamelessly going to share posts and sites that are all from people affected in some way by EDS – from Vlogs on Youtube, to an author to beauty blogs.

For a little Monday Magic, make a cuppa, sit back and enjoy!  Please remember to like, share and comment to make someone’s day!

https://www.facebook.com/search/top/?q=lara%20bloom%20eds# – this appeared on Sky News 28/05/17

http://mystripylife.com/2017/05/zebraday-2017/#more-7973

https://ribbonrx.com/2017/05/26/the-unpredictability-of-pots/

http://www.hospitalprincess.com/2017/05/this-is-what-ehlers-danlos-syndrome-is.html

http://www.edsneeds.com/spoonie-press/2017/5/27/mylifeinzebrastripes

http://caitlinswish.com/

https://spooniecentralbeautyandfashion.wordpress.com/about/

http://www.potsuk.org/stories/54

https://www.facebook.com/sherry.selfe.pro?hc_ref=PAGES_TIMELINE#

 

 

 

Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today

I wrote about my visit to the cardiologist last week, and as an Ehlers Danlos bendy with chronic pain and other strange symptoms including fainting, I found this article by a UK based GP to be easy to read and understand.  At the moment I’m not sure what I will be labelled with, but the more I read the more i am able to join the dots on a variety of symptoms from over the years – for instance the strange discolouration in my feet and calves as a teenager that looked like fluid pooling, for which my GP prescribed circulation tablets.  Just last week during the hot weather, every time I let my hands lower below heart level they turned purple, then navy whilst swelling with bumps resembling varicose veins!  See lovely pictures of my swollen hands – fortunately I was able to pull all my rings off before it was too late!File 26-08-2016, 12 56 25 File 26-08-2016, 12 56 52

 

Our series continues as GP Dr Lesley Kavi discusses this lesser-known condition.

“Recognising disorders of the autonomic nervous system is a challenge for GPs. Symptoms can be subtle, non-specific and mimic other conditions (1). Yet dysautonomia can be a source of considerable disability and poor quality of life for patients. The postural tachycardia syndrome is no exception (2)”

See full article at Source: Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today

#Ehlers Danlos radio drama “Tinsel Girl and the Big Reunion”

Whilst scrolling through the BBC iplayer earlier searching for a good drama to listen to, I came across this series with the introduction “An uplifting comedy drama about the lifes, loves and misadventures of wheelchair user Maz”.

I was pleasantly surprised when I heard that main character Maz has a genetic condition that affects her connective tissues called Ehlers Danlos syndrome.  It makes me hope that the syndrome is becoming more widely known and recognised in the mainstream.  Actress, fellow zebra and patron of Ehlers Danlos UK, Cherylee Houston plays main character Maz.

Follow this link for Episode 1 of “Tinsel Girl and the Big Reunion” by Lou Ramsden

http://bbc.in/2aC2wIX

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Poor mobility: Ehlers Danlos v chronic pain Norfolk part 2

In my last ramblings I told you how I found the wheelchair really did help to increase my freedom whilst on holiday.  I have since started to receive some useful tips about the type of chair to really help increase my independence as well as my freedom, and have filled out the forms for the NHS service.  Not sure how this will work out, but we have decided as a family that a wheelchair will become a permanent feature in the family.1069398__safe_solo_oc_simple+background_transparent+background_earth+pony_wheelchair_handicapped_artist-colon-sketchydesign78_oc-colon-melody+shine

Something that I hadn’t expected was that health problems other than the chronic back & leg pain would necessitate the need for the chair whilst we were away.  The weather was beautiful and we were really blessed, but – and I do know I shouldn’t moan – it was extremely hot and humid.  I can already hear some of you shouting “but the woman can’t cope with the cold, or air conditioning, so surely hot summer weather should be good”!  You would have thought so – but for many of us with chronic conditions our bodies become highly tuned barometers and actually can’t cope with any exoctopus-the-pirate-1412024-639x470treme changes.  So becoming too cold or too hot will have an effect upon the nervous system, which in turn controls all the other systems of the body.  This is why one person can seem to have such a Pandora’s Box of conditions –
and once that lid is opened they can come tumbling out together or appear slowly over time.  We are all different and I do now realise that many afflictions that I have had throughout my life are actually all part of the Ehlers Danlos.

For as long as I can remember I have felt rough when the weather is humid – headaches, migraines, nausea, swollen feet & ankles,wrists & hands,  dizzy spells – all in varying degrees, but over the last couple of years I have had an increasing number of faints, black spots in front of my eyes and dizzy spells. puppet-2-1623730-639x425 The sudden sweats are awful – I feel like I’ve been in the shower, but no they aren’t “hot flushes” as I can feel quite chilly.  So during our week away the wheelchair was great for those very light headed spells when I was struggling to see.  It is all very well the nice neurologist telling me that I must lie down when I get the feeling coming over me, but that isn’t so easy when walking the coast path or perusing the gift shops.  I have said in a previous post that I don’t have an actual diagnosis as yet, but I have become increasingly aware that the symptoms fit in with a POTS picture – that is postural orthostotic tachycardia syndrome – or similar and this is more common in the Ehlers Danlos population.

My GP is aware and as I did a good swoon in her surgery last month, she advised me to increase my salt intake. salt-spoon-1318134-638x350 On one particularly hot day, Duncan had gone into a vinyl store and my girl was pushing me when we stumbled,quite literally,upon a butcher’s shop with a basket full of pork scratchings for sale outside the door.  This is probably not to be recommended as the healthiest option, but a hand full of these certainly helped me to feel better.  This last week at home has been tricky as the symptoms have been rough again and the bright light during a day out triggered a migraine.  I find that my senses become heightened, particularly the sense of smell – not good when the family pet has a rank case of halitosis – and taste immediately prior to a turn – be it a faint or a migraine.  The day out that pre-empted the migraine was to a local National Trust property with mum, Dunc, my daughter & nephew.  I can’t believe that I am saying this, but I missed the wheelchair!  I felt rough, it was a lovely day and I couldn’t go for a walk with the family.  I forced myself to walk through the flower gardens, but every step was painful and I think that the impulses from my spinal cord stimulator combined with the bright light may have been making the head pains & dizziness worse.light-texture-1195217-640x480  Within a short time of getting back into the car, the nausea had started and I had visual disturbance, followed by severe head pains. Great, something else to sort out!!

This weekend has been just us “girls” as all the men are away.  We’re doing ok, but my girl, having already relocated both shoulder joints when I woke up, then found me passed out on the bedroom floor yesterday.  She is becoming quite the expert – good job as her own shoulders slip & slide, and she can’t stand up without seeing stars.  I feel a more detailed EDS post coming….

 

BTW: hope you like the new PainPals logo! painpals logo

Venous stent for #EDS symptom relief

This has just been shared on my Ehlers Danlos local support group page.  It is a really interesting read and could be a massive step forward for the EDS community.

3D-brain-stent

http://www.uvaphysicianresource.com/venous-stent-procedure-providing-relief-to-some-ehlers-danlos-patients/

 

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