Fibromyalgia Awareness – by Caz at Invisibly Me

This is a blog post from Caz at Invisibly Me blog marking:

International Awareness Day – ME/CFS // Fibromyalgia // MCS – 12th May 2018

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Today I’d like to do my own little tribute for the International Awareness Day for Fibromyalgia. It’s a little in advance as I’m sure that come Saturday there will be many posts on this.

Fibromyalgia has long been looked upon with scepticism, with many individuals and medical professionals doubting its existence. Some have regarded it as an umbrella term for lack of an officially recognised diagnosis, while others have intimated it to be psychological. Recent years have thankfully begun to shed light on this condition. Tireless campaigning has helped to raise awareness, increase understanding and has worked towards official recognition. But the fight isn’t over yet. There’s a long way to go to reduce stigma and improve both diagnosis and treatment for those dealing with fibromyalgia.

I was officially diagnosed with fibro by my rheumatologist last year after dealing with symptoms for years, initially thought of as being due to other conditions, that there was nothing wrong with me or perhaps that it was in my head (which they also said about my stomach issues, and here I am now, with a stoma!) For a while, I had asked to avoid labels and ‘umbrella terms’, mostly for fear it would signal the end of the road. I didn’t want them to stop looking for causes and the root of the problem, leaving me forever feeling worse and with no real way to get any better. I wanted them to keep looking, to figure out what was wrong, how my life has taken such a turn so quickly and left me like this for so long. The official diagnosis is to be reviewed in the near future due to overlapping symptoms between fibro & ME and the query over whether it’s both.

For full post visit Invisibly Me – and please share!

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.

Monday Magic – Inspiring Blogs for You!

A bit late in the day, but I hope those of you in the UK are having a fantastic bank holiday weekend and enjoying this wonderful weather.  I managed my scheduling for Chronic Illness Bloggers this morning, and then the heat got the better of my POTS – that is postural orthostatic tachycardia syndrome – and bahm, over I went.  The shoulder was already dislocated so that wasn’t a problem, but the student engineer didn’t manage to engineer the wheelchair sufficiently under me and I slid straight onto the floor.  My lovely old dog, who always knows when I’m not quite right but hasn’t got the true makings of a helper dog due to his own autistic traits, did his bit to bring me round – dog breath probably rivals the smelling salts of Victorian ladies any day!

Monday Magic Inspiring Blogs for You! 7th May

But all is well and this zebra managed a trip to our local park in the sunshine this afternoon….even walking some of the way!  Dogs walkers were out in force, alongside families and lots of smiles.  One of the nicest groups we saw was an antenatal/NCT type – easy to spot from the cluster of very self conscious new dads standing up and holding tiny new babies and the mums sitting on the grass with enormous bags under their eyes, but equally enormous smiles.  There were several young men looking like they were handling rugby balls, with a look of mild panic mingling with joy – the “help, what am I supposed to do with this little pink squirming human?”.  Funny how a home has to be vetted to have a new puppy, yet a new baby doesn’t come with a manual….and neither does a teen or a twenty something!

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One zebra, with supplies, ready and raring to go

Exams are under way – the student engineer is nearly no longer requiring the “student” moniker and is about to sit his second “final” exam.  GCSEs are starting in earnest for the lovely girl, having had the obligatory “muck up day” last week involving hundreds of rubber duck, balloons and the odd water melon. Don’t ask!

This week there are some old friends back on my blog list, plus some bloggers who are completely new to me – like Erin at QuintessentiallyMe and Carrie Anne Lightley.  There are some delicious looking brownies, some mindset tips and some flash fiction.  So sit back, with a glass of something tasty and enjoy!

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Hubby and a few zebra accessories for EDS Awareness Month!!

https://www.carrieannlightley.com/single-post/Barcelona-by-Wheelchair

https://strengthandsunshine.com/easy-thick-fudgy-one-bowl-gluten-free-vegan-brownies-allergy-free/

http://www.beecontentyoga.com/vacation-mindset-every-day/

https://painresource.com/depression/10-worst-foods-for-depression-and-anxiety/

https://quintessentiallymeblog.wordpress.com/2018/04/17/dont-cling-onto-high-school/

https://roughwighting.net/2018/05/04/between-the-lines/

https://awriteradolescentmuse.wordpress.com/2018/05/06/story-sunday-the-moments-before/

http://givingcharlie.com/motivational-monday-dealing-with-life-ups-and-downs/

http://www.gardeninglove.co.uk/mood-lifting-activities/

https://natashatungare.wordpress.com/2017/01/08/life-is-too-short/

Please like, comment and share posts that you enjoy.

Have a great week,

Claire x

 

Observe our Stripes – the Daily Prompt for EDS Awareness

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

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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?

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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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