This Zebra becomes a Film Star!! #EDSAwarenessMonth #EDS

OK not quite a film star!  I might have mislead you slightly in the title, but I hope it got your attention.  Hollywood is not calling any day soon, and I don’t think the beautiful girl is destined for a career directing or behind the camera, but we did laugh whilst doing our bit for “We Are Zebra Strong”!  I tried very hard to involve the younger zebras from the PainPals house, but when I suggested appearing in front of the camera the response was along the lines of “in your dreams”!

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We are nearing the end of Ehlers Danlos Awareness month – and awareness month for many other chronic illnesses – but for those of us living with these bedfellows the awareness is a daily reality, not just a month rolling around annually.

Chronically Jenni has once again put together some videos sharing lives of fellow zebras – in fact she had so much material this year that she made 5 Youtube features.  If you watch closely you might find yours truly in the mix!

 

 

 

 

 

Please take a look – bookmark for later – share with friends and family.  Just getting the name out there raises awareness for us!  Details of fellow zebras can be found on Jenni’s channel.

Find Jenni here:

Youtube

Instagram

Twitter

Blog: https://chronicallyjenni.wordpress.com/2018/03/14/chronic-illness-weekly/

Facebook

Thank you for watching!

 

Book review: The Pursuit of Ordinary by Nigel Jay Cooper

I was given an advance copy of this book through The Book club on Facebook in exchange for a fair and honest review.

What would it be like to one day be walking along the road with your wife, feeling the impact as a car crashes into you and then to be watching your wife cradling your dying body?  But then you realise that you aren’t watching yourself die from some faraway place, but you are actually in a body and have a voice….that belong to someone else?!

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Pursuit of O Pin

Dan is a homeless man, wandering the streets of Brighton when he witnesses this fatal car crash and his life changes completely.  His head is suddenly inhabited by someone else, claiming to be called Joe and saying that he is the dead man.  How can this be happening?  Add into the equation the wife of dead Joe, staring at him at the scene of the crash and asking over and over if he saw it….Dan/Joe doesn’t know what is happening!  Sometime later he comes across the wife, Natalie, sitting in the park and after he speaks to her, he determines to follow her home and Joe wants to tell her that he is still here.

Natalie is stunned when the homeless man turns up on her doorstep several months after the death of her husband Joe with his story.  She surprises herself and Dan when she lets him into her home, and then into her life.  Does Natalie truly believe that her husband is somehow now inhabiting another man’s body, or does she have a different motive for inviting a stranger into her home?  Does she even understand this herself – after all she is a grieving widow?  As Dan starts to open up about his life before he found himself on the streets, is it possible that Natalie can help him to find his way home again?

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This is a beautifully crafted surprise of a book.  The storyline is actually very simple, dealing primarily with human relationships and emotion. The writer manages to explore bereavement, grief, love and anger, whilst also including domestic abuse, family conflict, manipulation, miscommunication and mental illness.  The growing relationship between Natalie and Dan is fascinating as they learn to trust each other and themselves.  They are flawed characters and yet the way that they change and grow made me alter my opinions of them along the way.  Mr Cooper has written these characters with such compassion and tenderness that it is impossible not to care for them.  I felt that this care was also shown toward the secondary characters – Dan’s father, Natalie’s parents and even Joe’s mother.

This book is not what it seems to be at the outset.  But then the title should give us a clue, as what is the definition of “Ordinary” – it will be different for all of us.  In the current climate it is wonderful to read a novel that has such a positive and empathetic insight into mental health and mental illness.  There are surprises for both the reader and the characters as to who has the greater needs and the importance to have insight into one’s own situation.  Whilst the story is simple and focuses on these two, or maybe it is three people, there are many twists and turns that will pull you in and certainly had me hooked.

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I found this an intense and emotional read from start to finish and would describe The Pursuit of Ordinary to be absolutely extraordinary. A huge 5 stars!

Publisher: Roundfire (27 april 2018)

Goodreads Author: Nigel Jay Cooper

Facebook: https://www.facebook.com/nigeljaycooper/

Twitter: https://twitter.com/nijay

 

Available from

AmazonUK:

AmazonUS

Waterstones

Barnes and Noble

Foyles

WHSmith

About the Author – Nigel Jay Cooper

Writer and author, born in London, England. He now lives in Brighton (via Nottingham) with his partner, their two children and greying ginger dog.

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Following on from the success of his bestselling debut novel, Beat The Rain, Nigel’s second novel The Pursuit of Ordinary will be published on 27 April 2018 and is available to pre-order now. Nigel was nominated for a Goodreads Choice Award in the Best Debut Author for Beat The Rain. Nigel previously worked as a writer and editor for Channel 4 Television and as a newspaper sub editor.

He’s a sometime marathon runner and occasional actor and singer in local musical theatre productions. Sometimes his brain switches off and lets him sleep, but not that often.

Vote for Hidden Stories in the People’s Projects lottery funding – bringing people together with hidden illness and disability #SundayBlogShare

I have shamelessly lifted this direct from the Root Experience website as they have contacted me to ask for help to vote for their Hidden Stories initiative to win funding via The People’s Projects for the UK lottery.  This is a vitally important service for people suffering with invisible illness/disabilities and as someone who lives with Ehlers Danlos Syndrome and chronic pain every day, I am very happy to be an advocate for this project.

The voting closes on Monday 30th April at midday.  You will find links to vote below.

Please also have a look at the Root Experience website here and it would be fantastic if you would share this post on your social media,

Thanks, Claire x

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Hidden Stories is about helping people to share their experiences of what it’s like to live with an illness or condition that can’t be seen. It’s about replacing loneliness, fear and stigma with compassion, understanding and empowerment.

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HELP US SHARE MORE HIDDEN STORIES

Ninety per cent of people who relate to having a disability don’t have any visible symptoms, which often leads to misunderstanding, judgement and isolation. We want to shine a light on the wide range of emotional and physical struggles that are unseen in our communities, and encourage more compassion around them.

So we’re helping people with life-limiting ‘invisible’ conditions – from anxiety to autism, OCD to ME – share their experiences as part of an illustrated book designed to open up conversation and offer support.

With a People’s Projects grant, we’d be able to hold storytelling workshops and work with support groups in Worthing, Brighton, Southampton, Portsmouth, Chichester, Swindon, Oxford, Bournemouth, Crawley and Woking. Then after publishing our book, we’d distribute it for free on our Hidden Stories tour.

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THE HIDDEN STORIES BOOK: A MANUAL FOR CHANGE

Hidden Stories will enable people to learn about different conditions – and also seek support if they need it. Alongside personal accounts, there’ll be adaptable open letters which can be used to help explain conditions to family, friends and colleagues. The Hidden Stories book is only the beginning. We intend to build a ‘living library’ to help as many people as possible to tell their stories – because only by sharing our experiences can we begin to change how we see and behave toward one another.

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THE HIDDEN STORIES JOURNEY

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At the start of our journey, we helped people with ‘invisible’ illnesses tell their Hidden Stories through a series of creative groups resulting in an interactive exhibition at Brighton Dome. We used storytelling, visual arts and soundscapes to find different ways of exploring and expressing their conditions. This has already made a difference to the participants’ lives. It’s helping them to feel more visible and valued within their communities, and more empowered to talk about their experiences without fear of judgement.

Here are some comments about the exhibition at Brighton Dome, as well as snapshot of our creative groups…


THE HIDDEN STORIES BLOG


JOIN OUR SUPPORT GROUP

We’ve started an online Hidden Stories community for those living with or affected by invisible conditions and disabilities. As a closed Facebook group, it’s a safe place for sharing stories, asking questions, and for mutual support and solidarity – amongst  people who really know how you feel day to day.

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HELP US TO CONTINUE OUR WORK

Hidden Stories is an opportunity to talk about what’s unseen in our communities. Through our work we want to challenge perceptions, combat loneliness and invite people on a playful exploration of what it is to be human. Please vote for us to win a People’s Project grant, which would enable us to create our Hidden Stories book. You can also support our work ongoing with free donations every time you shop online – just sign up at our easyfundraising page. If you’d like to donate directly, please get in touch.

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Join our mailing list for updates on Hidden Stories and to get more involved in the project.

Illustrations copyright of Tinne Luyten

So Which Ology is it Today? The Chronic Life!

 

The winter Paralympics starts this weekend and once again my jaw will be undoubtedly hitting the floor as these athletes put themselves through feats that no human body should be exposed to.  Do they not know that this poor old body has not yet recovered from the near misses of the “Big Air”, the flips and trips of the ski slopes and the drama of the UK ladies’ final Curling match at the Olympics?  There is only so much stress one old girl can cope with!!

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Which Ology

This has been another of those medical fortnights, doing the rounds of the hospitals and doctors.  I called on my very own “Dad cab” the other day and as we arrived at the hospital even he said “So which Ology are we seeing today?” to which the receptionist grinned and replied “If you’re seeing an Ology you’ll be OK”……it will only be the Brits amongst you of a certain age who will get this.  So just to make sure no one misses out here is the wonderful Beattie aka Maureen Lipman:

 

So where were we?  Visiting rheumatology on this occasion and the very nice consultant(wrote about him here!) who is still of the opinion that I’m managing my condition very well, but he will defer comments about care of the ever dislocating shoulder to the orthopaedic consultant – who I visit next week.  But he doesn’t have an Ology, so it might not go well!!

Then there was the visit to Gastroenter”ology” and a young man who introduced himself as Chris and told me his dad trained at the same hospital as me at about the same time. How to make a middle aged bird feel even better about herself – and I haven’t even hit the half century milestone yet!  Well Chris, actually a registrar, explained the results of the last camera which looked down my gut, and would now like to do another one from the opposite direction – oh joy!!  I have to admit to being pretty impressed though when he actually rang me yesterday to confirm that the latest armful of blood I gave shows that my anaemia is worsening….and then I had a call asking me to go in for said delightful procedure on Tuesday.  So yours truly is currently sitting waiting expectantly for a fed ex delivery – no not of flowers and chocs from my children….but for bowel prep from the hospital!!  I know that in the 24 hours before I will only be allowed clear fluids and I have it on good authority that white wine is allowed – when the said authority called his hospital to ask if he could imbibe, he was told it was the first time they had been asked that!

It comes to something when you find yourself discussing which hospital coffee shop serves the best coffee, as Dad and I were on our way home – or when the highlight of the week is a trip out to hospital.  I believe it is called the chronic life!  So now back to the Paralympics to be amazed by superhumans doing extraordinary things and I will continue to daydream of flying through the air on a snow board…..

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From the Lancashire Evening Post: Swimming star, her chronic illness and decision to retire from the sport #EhlersDanlosSyndrome #RareDiseaseDay

It is unusual for me to publish 2 posts on one day – but it is Rare Disease Day and this is another example of an amazing Zebra #EhlersDanlosSyndrome. The Lancashire Evening Post have kindly allowed me to share their article with you.  To view the accompanying video to the post please visit Lancashire Evening Post

Big Interview: Swimming star Stephanie Slater opens up on decision to retire from the sport

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As Stephanie Slater succinctly puts it, ‘To look at me, you wouldn’t think there was anything wrong’.

Indeed with her almost permanent beaming smile together with her bubbly personality, the Longridge lass – who won a glorious gold medal at the Paralympic Games in Rio – does not look anything other than ‘a picture of health and happiness’.

Congratulations on being an inspiration to so many and accomplishing your Olympic Dream!! Happy Retirement @StephESlater !!

However, the swimming sensation last week made the shock announcement that her pool career was over at the tender age of just 27 due to ongoing health issues.

It is a little known fact that Slater almost did not make it to Rio after struggling with a severe neck injury the year before.

After a series of tests, she was eventually diagnosed with Ehlers-Danlos syndrome and Postural orthostatic tachycardia syndrome (POTS) – conditions which she has unknowingly struggled with for all of her life.

Passed off by a series of medical professionals as just growing pains when she was a child, it is remarkable to think that Slater reached a level where she was considered a potential competitor for the 2012 Olympics.

Stephanie Slater

Exceptional Zebra, EDS swimmer Stephanie Slater

Stephanie Slater

However, the conditions would eventually put paid to her able-bodied career in the lead up to the London Games and almost curtailed any hope she had of competing as a paralympian.

Through sheer guts and determination, Slater made it to Rio and all the pain was worth it when she returned with a gold in the medley relay and silver in the S8 100m individual butterfly.

“It was actually touch and go as to whether I was going to make it to the Paralympic trials in 2015 – I was out of the water struggling with a severe neck injury,” Slater said.

“But with rehabilitation and just basically pushing myself, I managed to get the qualifying time.

Stephanie Slater shows off her medals.

Stephanie Slater shows off her medals.

“With the amount of pain that I was in, I was eventually diagnosed with Ehlers-Danlos syndrome.

“The condition is to do with your connective tissues throughout the whole of your body and basically mine is faulty. It means my body is not held together like it should be.

“I was also diagnosed with POTS.

“It was that condition which kept me out of the pool and preventing me from training because it causes you to collapse unexpectedly.

Stephanie Slater moments after winning her silver medal in Rio

Stephanie Slater moments after winning her silver medal in Rio

“So being around a pool made me nervous because I did not know whether I was going to collapse or not.

“Both of my conditions are invisible.

“To look at me you wouldn’t think there was anything wrong with me.

“But there is and it badly affects me.

“Because it’s so rare, they had not been able to diagnose it when I younger.

“I have had all these problems growing up and it was just put down as growing pains or that I had been doing too much training.

“It was just brushed off, but actually I have been battling with it since I’ve been a baby.

“It’s kind of nice in a way to finally have a diagnosis.

“At the same time, because there is no cure, it’s one of those where it’s like, ‘It’s got a name, but it doesn’t change anything’.

“I have just got to get on with it

“It answers the question of how I got the injury to my arm when I was training for the London Olympics in Swansea.

“Back then, they didn’t know why, but now there is an answer.

“Hopefully by stopping swimming now, I will stop myself from suffering any more nerve damage or even worse paralysis.

“With my neck, it’s quite fragile, so I have to be really, really careful that I don’t cause further damage.

“People can’t believe what I have achieved with what I have been dealing with.

“I have never complained about it or spoken about my condition and how it has affected me.

“At the end of the day, I wanted to achieve my goals and I wasn’t going to let anything stop me.”

There are certainly pangs of regrets for Slater that she has been forced to give up the sport she loves doing the most prematurely.

“It was really, really hard and it took quite a few months to come to the decision,” said Slater

“I spoke to a lot of medical professionals and also to my support team at British swimming.

“I had to make the hard decision to retire for my own health and well being.

“I always felt that I had a lot more left in me to give so that is what has made it really hard to stop.

“I know that it is the best decision for me and I have just got to look at what I have achieved.

“My last competition was Rio and the Paralympics, so it’s nice to think that I finished on a high – winning a gold and a silver.”

Slater’s memories of her time in Rio will never leave her and she breaks out into an even wider grin – if that’s possible – when she thinks back to her time at the Paralympics.

“It was just a party atmosphere,” she said. “The atmosphere was incredible.

“I remember doing an interview with Clare Balding in the village where all the different venues were and the amount of people who were crowding around us was incredible.

“They all wanted to speak to us and have pictures. It was amazing.

“I had been to the Commonwealth Games in Glasgow two years earlier and I was expecting it to be like that.

“But the Paralympics were so much bigger.

“Just the size of the food hall was incredible – it was like the size of four Asdas.”

Slater’s achievement in winning gold in the relay was a double delight as the team also broke the world record.

“The relay was between us and the Australians,” she said.

“That was how it had been four years earlier in London, but on that occasion it was the Australians who had actually pipped GB.

“When I dived in, I had to catch the Australian girl up.

“I just thought, ‘I have got to get the gold – there’s going to be nothing stopping me’.

“I just put my head down and went – when we touched that wall and we saw that we had broken the world record as well, it was such an amazing feeling.

“It was so, so nice to stand on the top of the podium and see the GB flag rise.

“All of the GB supporters were there with their flags and I could see my mum and dad in the crowd.

“That was really, really special for me.”

Tuned Up and About to Charge the Battery – the Pain Clinic

So I made it to the pain clinic in one piece – just!  The body work did its utmost to stop me and it was probably the furthest that I have travelled in my motability chariot (in time – it was rush hour travelling into London, you understand!) – so our arrival at St Thomas’ was surrounded by a cacophony of feelings in back, hips and thighs, with the right hip spluttering the loudest.

Fortunately parking is never an issue because the carpark is so blooming expensive – but, any blue badge pals out there – did you know that at St Thomas’ you are able to park for free if you show your appointment letter and you actual blue badge to PALS.  At Guys you can also park for free in the NCP carpark along the road by presenting your letter, NCP ticket and blue badge to security before you leave.  Might have saved someone a small fortune there!  What was an issue was getting into a lift from the basement to the ground floor – I mean, come on people, I am not sitting a wheelchair because I am feeling a bit tired.  I can’t actually climb the stairs!!

Tuned Up

The engine revived with caffeine and banana, we checked in to the pain clinic which faces directly opposite Big Ben and the Houses of Parliament – currently shrouded in scaffold.  I always forget just what a wind tunnel is created along this stretch of the Thames and Wednesday morning was no exception – good job I was using my wheels because the icy gusts would have tackled me easily.  As predicted the CNS was surprised and concerned when she saw me, but once I reassured her that the bodywork changes before her are down to the dreaded stretchy body parts, she went about checking the pain levels.  I am pleased to report that once her little box of tricks “spoke” to my implanted little box of “tricks”, it was established that my switching on and off, general usage of the stimulator and recharging is all scoring full marks! Hurray.

Next the tricky part.  Any chance of a retune?  This was no problem and the external box turned off and then turned back on the internal box…..jump starting the battery back to life and automatically altering the sensation.  The biggest difference is the feeling in the sole of my foot – it is difficult to describe, but the electrical pulses feel more rapid and “wider”.  The pathway of the pain through my foot is so specific that I could draw it for you to see, so the area that needs to be covered by the neurostimulation is very specific and so very specific electrodes in the lead on the spinal cord need to be active.  But how about getting some of that lovely electrical stimulation that knocks out the way my dodgy wiring sends perceived pain to my nerve centre – my brain – into my right hip and thigh??

Of course the proper response is that nothing can be altered for pains that haven’t been investigated – it wouldn’t be good to mask pain that is due to injury or a new illness.  But of course in this case one bendy chassis is causing wear and tear on the bearings and axles, putting the tracking off massively.  The biggest concern had to be keeping the pain coverage in my right side to the same level – it would be awful to lose the fantastic coverage i have.  But with a little tweaking she managed to give me a little sensation in my hip and if I lean back into the chair (or better still lie down onto the electrodes) the strength of the stimulation increases.  It doesn’t get rid of the pain or even mask it in the same way that it masks the nerve pain, but any little bit of relief this rust bucket will take!

So the bodywork may not have been replaced by a shiny, sleek sports model, but with a bit of fine tuning it is slightly more comfortable.  (BTW the beach buggy above was Dunc’s first car, and whilst sparkly, not very comfortable!). Thanks for all the good wishes – really appreciated.  Now I’m off to recharge my battery for a new week…..and in this case I assure you I am being literal, not metaphorical.  Should take me a couple of hours to complete!IMG_0817

(BTW: any St Thomas’ pain/input patients out there – the booking system was changed last year and the nurses are no longer allowed to book our appointments.  But since central bookings has taken over, quite a few of us have slipped through the net – hence why I had no appointment last year.  If you have a problem call them or email the nurses at their catchy new address:

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Nobody said it would be easy – cake, life and curveballs

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Tonight is the 3rd birthday for The Book Club on Facebook – a fantastic group that I belong to full of authors, reviewers and readers.  Basically book people.  Yours truly has been making the birthday cake over the last few days and with a shoulder slipping in and out of socket it has been no easy task!

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Of course I have been too ambitious and I always start with an image of the finished cake, and then am disappointed in my results.  This has taken me longer not just due to my lack of a right arm – yes, I am right handed – but also down to the design and needing to let it harden in phases.  More of that later.  It has made me draw parallels with expectations of everyday life – don’t worry I’m not going to get too deep here.

But how often do we set out with expectations of how an area of life will turn out only to be disappointed.  So many people talk about their life plans from university to careers to marriage to children etc, etc.  But life has this habit of throwing in a few surprises and curve balls along the way doesn’t it? Isn’t this true for everyone?

Life with illness – be it chronic, acute, mental or physical – is something few of us can anticipate and much less embrace.  When I set off to nursing college as an eager 18 year old, I never dreamed that life would turn out like it has.  But then I guess it is a good thing because with each setback it is so important to be able to get back up, brush yourself off and continue.  If I had known when I had major back surgery at 21 that by 38 I would be heading for medical retirement, I might not have tried so hard to get myself back on my feet and back to work.  I loved those years nursing and I think that I was a pretty good nurse.  If I had known my genetic diagnosis – Ehlers Danlos Syndrome – and all that it covers aged in my teens, I might not taken up rowing and then gone on to nursing – probably the worst things I could have done but great experiences.

But then some of the curve balls can be pleasant surprises.  For me probably the biggest surprise was falling pregnant when I had been told I would never conceive naturally.  The tiredness, anaemia and nausea/sickness turned into a pregnancy when my GP carried out a PAP smear and informed my cervix was blue – a classic sign of a 13 week pregnancy apparently!  I was taking HRT and had gone for a check up ahead of a new job – but came out as a mummy.  A huge curve ball, not in the game plan but fantastic (although I wasn’t saying that half an hour ago when said babe, 21 years on, created havoc in the kitchen with a pot of pasta on the stove!).

Being Mum

The surprise. aged 4 weeks….now a cover board on Pinterest!

I suppose what I am getting at is the importance to strive hard but also to accept that not everything will go exactly to plan…..and this is ok.  For me I’ve been thinking about the periods of needing to let my cake set before I can continue with it – living with chronic illness has these periods when fatigue hits and symptoms flare equalling a need to rest and pace.  Wait for the cake to set!  Don’t rush it, don’t take short cuts because there will be some sort of pay back.  In my experience this is life – illness or not.

So back to the cake….it is for a book club, so clever clogs here decided to make a stack of books.  The individual books were made – one chocolate, one Victoria sponge and one lemon – and then the icing covers started.  This is where the patience and waiting was required and I’m not good at this part!  Then last night came the final assembly of the three tier cake to form a stack of books……it wasn’t completely straight forward, there have been a couple of corners broken, some scaffolding was required and this morning some patch were required to plaster a few stress fractures.  The result is a stack of books that are not altogether straight and definitely look like they have been well loved if a little dog eared.  Not so different to life, I’d say – starting with high expectations (nothing wrong with that and I am not saying they should be lowered), hitting a few bumps along the way, the odd curve ball and maybe the finished product not quite as expected, but nevertheless created and to be made the best of.  Not always easy to do or accept, but as the infamous anonymous quote says “Nobody said it would be easy, they just promised it would be worth it..”

Will let you know if this holds for the cake when it is tasted, as for comparisons with life….what do you think?

Nobody said....

Pin It!

 

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?!

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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.

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!

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