Medical professional to Professional Patient

In under ten short years I have found myself well and truly stepping out of one uniform and into another.  I didn’t see it coming, I really didn’t.  But it crept up on me slowly and insidiously from my first surgery aged 21 until at the tender (don’t laugh) age of 39 I was officially declared medically retired. On the scrap heap, put out to pasture, caput!

Somewhere in the depths of my wardrobe hangs a blue nurse’s uniform along with a tiny belt and silver buckle, given to me when I qualified. I’m not sure that the belt would go around a thigh now, let alone my middle!! File_000 (45) These days my uniform is more likely to consist of trackie bottoms, PJs or if I am really lucky, a beautiful, backless hospital gown. Now you are understanding what my new uniform looks like, right?!

 

 

A couple of weeks back I started to write about a visit to the geneticist with my teenage daughter, known here as the lovely girl, and I have been gathering my thoughts around all the different appointments on my calendar recently.  As a medical professional I never appreciated just how many chronic illnesses there are out there, and even less how so many are multi systemic.  In palliative care we prided ourselves on being multi disciplinary but this really only scratched the surface.  Of course all that time I was nurturing my own genetic illness slowly but surely.  It was undiagnosed formerly; always just known as double jointed, bendy, funny circulation, chilblains, headachey, migraines, hormonal, dizzy, faint…..growing pains, sciatica, nerve damage, chronic pain – you get the picture.  But in recent years the pieces of the jigsaw have fallen into place, not always quite in the right places, but we are getting there and the appointment with my lovely girl reinforced this.

My hospital visits over the last month have included the geneticist, rheumatologist, cardiologist, endocrinologist and orthopaedics, not forgetting my GP!  With other symptoms of chronic illness such as fatigue and brain fog, the endless waiting rooms and then repetitious consultations can be exhausting and demoralising.  No one is at fault – it is the system. I have been pleasantly surprised to find that the younger generation of doctors have heard of my condition – Ehlers Danlos Syndrome – and seem to be aware that it can affect all body systems, not just that one that they are currently specialising in!  My eldest, the student engineer was out with friends at the end of term and one of his medical student mates commented upon my son’s shaky hands…..nothing to do with the fact they were in a bar, he assures me!  Anyway he proceeded to show them his bendy fingers – his really feel like there are no bones inside – and then his elbows and knees, and afterwards called me to say that the medics had been taught about connective tissue disorders and had heard of EDS..hurray!

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The Student Engineer – photo taken by Dan McKenzie

Having a diagnosis at just short of turning 15 is a huge leap forward for my girl from the position I was in at her age.  I think that I mentioned before that the genetics consultant wants us to keep an eye on her back as she will be susceptible to problems due to shoulder subluxations and wonky hips.  We know that there is no cure – the endocrinologist was so apologetic that he can’t do any more to help me, whilst the rheumatologist said I have an excellent knowledge of my condition and seem to be managing it well.  Orthopaedics know that I require joint replacement surgery – but I am currently too young and the unknown quantity is the constant dislocations.  The cardiologist is keeping a closer eye on matters and has increased one drug dosage to help with the dysautonomia fainting.

There you have it – in the space of a few years going from medical professional to professional patient!  As I said there is no cure for my kids, just a greater understanding of what might cause problems and what will help to prevent deconditioning. The geneticist told the lovely girl that there is no reason to think she will become a seasoned pro like her mum, to be mindful but to go away and live life.  Funny, but the endocrinologist said something similar to me about living life the best I can.

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My lovely girl on her way out to live…..

 

Hindsight is a wonderful thing….maybe if I had known, I would never have donned that blue dress only to swap it for a beautiful backless (hospital) gown!!  But it may well have made no difference.

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What a difference a decade makes! All dressed up – my last night out before the latest rounds of surgery and hospital visits! The whole family – with my parents and brother.

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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!

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.

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