Tag: Ehlers Danlos Syndrome

Old Year, New Year and being a Versatile Blogger

On By Claire Saul (PainPalsBlog)In Blogging, chronic illness, Ehlers Danlos Syndrome24 Comments

A few weeks back I was nominated for the Versatile Blogger Award by the wonderful Nikki, the Brainless Blogger.

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I met her on the “chronic illness” circuit – have a look at her site The Brainless Blogger here – but she also writes fantasy fiction and you can find some of her work under her pen name Lil Hamilton.  I think you will agree her own Versatile Blogger award is very well deserved.  Thank you, Nikki, so much for nominating me!

THE RULES:

1. If you are nominated, congratulations – you have been awarded the Versatile blogger award! 

2. Thank the person who gave you the award and include a link to their blog.

3. Select 15 blogs/bloggers that you’ve recently discovered or follow regularly. 

4. Nominate those 15 bloggers for the Versatile Blogger Award.

 5. Tell the person who nominated you 7 things about yourself. 

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At the beginning of the New Year many bloggers reflect on the year that has just gone before and think ahead to set goals and/or resolutions for the year to come.  I thought that I would try to do something slightly different and incorporate my seven Versatile blogger answers with my New Year post!  So here goes…….

  1. I have a chronic genetic condition, Ehlers Danlos Syndrome, which means that rather than producing connective tissue that is elastic, mine is more akin to chewing gum.  It can affect any body part that has collagen/connective tissue.  I can’t remember a time when I didn’t dislocate one joint or another, or experience a pain free day but my first major problem came aged 21 resulting in major back surgery, nerve root damage and chronic pain.  Whilst a consultant picked up that I had a “syndrome” when I worked in his theatre as a student nurse, ironically it wasn’t until 20 years later that I was formally diagnosed at my old training hospital, University College London!
  2. I was a nurse in a former life.  It still hurts to say “was” rather than “am” – one of my greatest sadnesses to come with chronic health and disability has been losing my career and registration.  My passion was “head and neck” cancer nursing and later Palliative care – I was privileged to work in both specialities for many years.  2018 marked 30 years since the start of my nurse training and I was so fortunate to be well enough to spend a weekend with some friends from my nursing set, to visit the hospital and a few of our old haunts! img_1650
  3. I am a book worm! Remember the days before mobile phones using a torch under the bed covers to read? I was one of those kids! I still prefer proper books really, but will admit to reading nearly everything on my Kindle as easier for dodgy joints – but I remain a bit OCD with my books as I can’t stand for anyone to crease the spine let alone fold down a page corner! These days I write the odd review, belong to  book clubs and will read just about anything.  I go into 2019 pleased that I made my personal 2018 reading challenge (on goodreads) and hopeful that I can continue reading and reviewing.
  4. I am a mum to 3 young adults aged 22, 19 and 16.  This last year I have felt the most pride as a mum and also the most stress and angst as a mum to date – these kids don’t come with a manual and it definitely doesn’t get easier as they get older.  I guess my parents would agree!!  Let’s hope that the next 12 months are less of a rollercoaster….
  5. I love dogs.  All shapes, sizes and colours.  I am currently broody for a pup but our old (16 years) collie cross Samson is not in agreement with his mum.  He is my constant companion – a completely batty boy with special needs who we rescued aged 6 – and has seen me through the years since I was forced to retire.  He is completely in tune with my bad days and is very protective of me.  We also have a surrogate boy, the beautiful viszla Chester, who we have looked after for friends a couple of times a week since he was 6 months (Sam goes to Grandma on those days!) – we love him to bits.  Being at home, sometimes for long stretches, I couldn’t imagine being without a furry friend at my side!

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    My old boy Samson
  6. I make celebration cakes. Not professionally, but for friends and family.  I have always made birthday cakes for my kids, but when I had to stop working I started to play about with some more ideas and experiment with icing.  The strangest request was from a friend wanting a “Tesco” carrier bag for her husband!!  The icing is becoming more and more difficult though as my joints deteriorate – rolling out a sheet is nigh on impossible with a dislocated shoulder, so I’m trying to teach hubby!  Fingers crossed that I will be able to make a few masterpieces (ha, ha, ha) in 2019.
  7. My guilty pleasure is binge watching box sets – Netflix and Prime have become my best friends in recent years and I blame my daughter for the binge watching!  These days it is much harder to join in with family activities, so it is great to be able to spend time on the sofa with my lovely girl…..some favourites for us in 2018 were the finale of Sense 8, the German series “Dark” and “You are Wanted”, “Travelers” and “Anne with and E”.  We are both looking forward for the next season of Dark to be released in March!250px-darknetflixposter

There you have it – seven things about me, with a bit of looking back and looking forward thrown in.  Maybe I should have said that I don’t make resolutions – I’ve never been able to stick to them beyond the first week of January so years ago I just thought why set myself up to fail?!  I am happy if I can go into the new year with some positivity and hope!

Tagged Bloggers who are versatile and interesting – great if you take part, no problem if you don’t.  You are all still versatile!

Lorna at Gin & Lemonade

Orla at Fancy Paper Blog

Anindya at My Daily Journal

Debbie at Debs World

Josy at A Walk and A Lark

Jo at A Journey Through the Fog

Rhiann at My Brain Lesion and Me

Sam at My Medical Musings

Lainie at Trend-Able

Sue at Sizzling Towards Sixty

Kerry at Kerry, Life and Loves

Pamela at There is Always Hope Blog

Jen at Tripping through Treacle

Liberty at Liberty on the Lighter Side

Arv at Jaipur Thru My Lens

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I could have tagged so many blogging friends here – some are other chronic illness bloggers, others I have met in groups or follow.

Enjoy and have a very Happy New Year!

Accessibility Day at Gatwick Airport – Air Travel with Chronic and Invisible Illnesses

On By Claire Saul (PainPalsBlog)In Accessibility, Autism, chronic illness, chronic pain, Disability, Ehlers Danlos Syndrome, Review12 Comments

Accessibility pin

Aircraft
Photo courtesy of Dan McKenzie

Please note this has been written from my personal perspective

Farewell to Me and Hello to Myself – Changes with Chronic Illness

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Life31 Comments

I’ve been struggling to write, to take part in blog shares or blog parties. I don’t know why….brain fog, the constant nagging pain in a near permanent dislocated shoulder, stress from an adolescent, lack of pacing, all manner of things could be blamed….I just don’t really know.

Pin for later

Farewell to Me

Hubby was clearing out earlier this week and came across some DVDs that he and my brother compiled years ago from my parent’s camcorder.  You must remember the black boxes carried by all self respecting tourists about 15 years ago?  Unlike the traditional camera with a film to be exposed and turned into photographs, the stream of moving images needed to be converted from a small cassette into a format suitable to be viewed on a home system – usually a DVD player by this time!  We had forgotten we even had them but, when the writing refused to flow, I have spent several afternoons watching short clips from 12 – 20 years ago.

 

A wonderful trip down memory lane from the eldest being an inquisitive toddler – did you really let him use let hammer and hit himself, Dad/Grandad?  – to holidays abroad with all three kids, to Christmases where departed family are still very much alive and laughing alongside the rest of us.  For me it was my young children that I was watching closely and shed a few tears when my lovely Grandad appeared with the then 4 year old politics student discussing a Ninja turtle gift for Christmas 2003.

But hubby told me today that he struggled to view the clips as he was watching me!  Why?! I wondered –  what was so interesting about me being mum….pregnant, with new babe and toddler, unwrapping presents, pushing a buggy, going to work. Hmmmm – that was it!  He saw me – how I was, always on the go, winging it most of the time, particularly around my back problems, pain and EDS.  Walking, running, playing, dancing, swimming, working.

Claire & Lucy

A particularly poignant moment was hearing our lovely girl’s voice, aged 2, telling Mummy and Daddy to cuddle as she zoomed the camcorder in on us – with a little help from her brother.  On hugging a little voice shouted out “Kiss!!” – we were on holiday in France and this was our last holiday abroad as a family as chronic pain was soon to strike.

Not looking quite my best today! The ECG is attached to one pad on the chest wall and via a lead to another pad below the left armpit. The monitor can be unclipped to shower.

Whilst I had not really seen myself, much less watched myself (who likes watching and hearing themselves?), hubby saw the person I was and remembered the person I became.  The woman turning 40, riddled with pain and opiates, puffed up with drug weight gain and lunging into reactive depression.  The woman struggling to be a wife and mother.  Sometimes it is easy to forget that this journey with chronic illness is not ours alone.  Our nearest and dearest live it with us, the good with the bad, the happy with the sad.

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The Moonwalk

When I mentioned her dad’s comments to the lovely girl, I did feel sad that her answer was that yes, she noticed it too as she can’t remember me before my symptoms took over and my general health deteriorated.  The mum on the film looks like me, sounds like me but is almost a stranger.  Or is she?

Hubby had the final say by reminding us all that it is possible to move beyond those awful middle years.  He says that I am me again!  It sounds a bit dramatic doesn’t it?! Accepting my situation, being pushed to come off the regular opiates in order to have a spinal cord stimulator and keeping as healthy as possible(!) has been transforming.

Whilst I will never be that thirty something who seemed to lose so much almost overnight as she turned 40, now as I look toward turning 50, I think that I can say that I am ME again.  I look in the mirror and as I look past the grey hair, the lack of sleep, the metal spine, the splints and mobility aids, I feel like myself and so I see MY reflection once more.

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Photo by Andre Mouton on Pexels.com

 

 

 

 

Just Another Day – with EDS & POTS

On By Claire Saul (PainPalsBlog)In chronic illness, Dysautonomia, Ehlers Danlos Syndrome, Poem, POTS11 Comments

 

Just Another Day pin

 

The world feels off kilter

I’m spinning…..round and round

Every time I lift my head

The snow  descends, engulfs me

At times it overwhelms me

And then, bang, down I fall.

 

Lucy EDS 1

 

Falling, falling, twisting down

How long it takes to reach the ground

Slow motion into blackness

Nothingness

Painless

Floating.

 

Pain, pain, pain

Why am I on the ground?

A twist here and a bend there

Limbs entangled, joints at angles

Unnatural, except for me

Stretch and snap is the norm.

 

Lucy EDS 2

Salt, water; water, salt

Compression to limbs.

Like an autumn leaf

I fall and break

My body fragile, unstable

Just another day with EDS and POTS.

POTS & Me

 

 

 

 

Round and Round – My Zebra Journey #SoCS

On By Claire Saul (PainPalsBlog)In chronic illness, Ehlers Danlos Syndrome, Stream of consciousness, zebra9 Comments

Round and Round - Pin

Round and round, up and down.  I seem to be moving along in my life but never getting anywhere!  When I look a bit closer I am travelling on a merry go round – round and round, up and down, a never ending circle that just doesn’t reach my final destination.  Others around me are on the travelator – the kind that you get in the airports or new supermarkets – and seem able to see their destination and even to jump on and off en route.

But my journey continues round and round, up and down as the ride continues relentlessly day in and day out.  When I look down I realise that I am not even seated on a brightly coloured galloping horse decorated in golds and silvers like the others accompanying me – yes there are others who seem to be at a stage in their journeys of being on a hamster wheel, unable to reach a destination.  Instead I am seated on a zebra – a stunning animal admittedly, and not so dissimilar to the horses around it in shape and size.  He has a mane, a tail, hooves and he can gallop at great speed.  To hear him coming you might mistake my trusty steed for a horse – but he is not, he has stripes and he is a zebra.

My companion on my life journey is different and I am unable to jump off the merry go round that he is firmly bolted to.  I raise my hand at fellow travellers passing by and the others joining me on my ride….every so often another zebra joins us and we continue our journey together. Up and down, round and round.

This is part of Linda G Hill’s Stream of Consciousness – pop over to her site, read the rules, take the prompt “Round” and start writing….then link up!

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Why the Zebra?

The Zebra has been adopted by the Ehlers Danlos Syndrome community as traditionally medical student have been taught throughout training that “when you hear hooves, think horses, not zebras” – think of the obvious conditions first, rather than the exotic and rare.  Thus in medical circles, the term “zebra” is used to describe a rare disease or condition and we EDSers are referred to as zebras!

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

On By Claire Saul (PainPalsBlog)In chronic illness, Ehlers Danlos Syndrome, Invisible illness7 Comments

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!

 

Observe our Stripes – the Daily Prompt for EDS Awareness

On By Claire Saul (PainPalsBlog)In chronic illness, Daily Prompt, Ehlers Danlos Syndrome5 Comments

EDS Awareness

 

OBSERVE our stripes – we are rare – we are zebras – we have a genetic connective tissue disorder – we have Ehlers Danlos Syndrome!

#EhlersDanlosAwarenessMonth #FragilebutUnbreakable

Ehlers Danlos Awareness Month Challenge! Spread the word and tell the world about EDS

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome26 Comments

EDS AwarenessTake the Challenge! (1)

 

This challenge has been started by Tayler @strugglinsmol on Twitter and she would very much like all zebras to take the challenge and help spread awareness!! Please share, tweet and join our #FragilebutUnbreakable challenge!

Here goes:

  1. Hypermobile EDS
  2. Officially in 2012 aged 43, unofficially aged 20 as a student nurse orthopaedic surgeon told me I had Marfans syndrome (another connective tissue disorder),  also hypermobility & Mum’s and my long limbs/fingers noticed by a GP when aged 7
  3. POTS, migraine, Raynauds, difficulty regulating body temp, gut motility probs/gastroparesis, chronic back pain & cauda equina syndrome.
  4. Very….slightly less so now than as a teen!
  5. Moderate
  6. Wheelchairs, walking sticks, crutches, motability car
  7. Spinal cord stimulator implant, heat, drugs, more heat, cushions & stretching, yet more heat
  8. Mainly all back surgeries – laminectomy, pedicle screw fusion, redo of fusion with extension, spinal cord stimulator implant, x3 c/sections, minor shoulder & knee exploratory
  9. For surgeries, pain management, gut management
  10. Normal now is constant back and leg pain due to nerve root damage – managed with spinal cord stimulator, limited mobility, worst POTS symptoms in the morning after breakfast, at least one dislocation per day and generalised background pain, poor stamina, nausea & slow gut, unable to feel when bladder is full
  11. Flares vary – generally pain is far less predictable & out of control, brain fog/memory problems, fatigue, POTS flare when unable to even sit up without fainting, blood pooling in hands and legs, breathlessness, lack of concentration, visual and smell disturbance (migraine)
  12. Fab GP, Pain specialists, Cardiologist, Rheumatologist, Orthopaedic surgeon, Gastroenterologist, Urologist……
  13. In our local small supermarket with hubby – I had walked with a Smart crutch, but as we got to the checkout those familiar POTSy feelings came and I was unable to sit down fast enough.  Next thing I knew I was coming round on the floor, shoulder dislocated as arm stuck in my crutch, with a very nice young man at my side rushing for water…..hubby? Well having checked I was safe on the floor, he carried on paying for the shopping telling the bemused cashier “Oh, don’t worry she does this all the time”!!! Her face was a picture.
  14. This has to go to be shared by 2 physios, 20 odd years apart…..the first told me as a 21 year old student nurse that “You nurses are all the same. It is in your head”…..despite my footdrop, no reflexes, and double incontinence – corda equina syndrome!!! Following my second spinal fusion and discovering I had nerve root damage & thus permanent pain, my rehab physio decided she would be able to “cure” me.  During my second visit she told me that I needed to work harder to get some movement into my lower spine…..erm, I don’t think so!  There are enough screws and filler in there to hold up a kitchen cupboard – IT  ISN’T SUPPOSED TO MOVE, WOMAN!  We agreed to part company.
  15. I have been so lucky – but my pain specialist at St Thomas’s actually believed me and has made life bearable AND my cardiologist who also believed me and knew about EDS & POTS (I was so convinced my tilt table wouldn’t show anything)

I will save you from more wittering today and publish the second half later this week!

#FragileButUnbreakable #EhlersDanlosAwarenessMonth #ZebraStrong

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Not even doing the full bend here – don’t do this at home!

 

 

May is Ehlers Danlos Syndrome Awareness Month – Why the Zebra?

On By Claire Saul (PainPalsBlog)In chronic illness, Ehlers Danlos Syndrome, zebra1 Comment

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I warned you yesterday that I will be going totally overboard with the EDS awareness posts and zebra pictures this month.

To kick us off here is a quick explanation of “Why the Zebra?”

Medical students/junior doctors have always traditionally been taught to look for the simplest explanation when diagnosing a patient in order to prevent misdiagnosis of rare conditions.  If it looks like a horse and it sounds like a horse……if you hear hooves, think horse…..etc!

In medicine the term zebra is used to describe a rare disease/illness/condition, but often it can feel that medics forget that whilst rare, zebras do exist and can struggle to get a diagnosis and treatment.  This is frequently the case for Ehlers Danlos Syndrome patients, and so we have become known as medical zebras.  This has been adopted by the worldwide community now as the identity for EDS and through the use of social media helps to unite us.

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