GDPR & Me!

So here it is – 25th May, the great GDPR day and I am none the wiser, PainPals!  I think I am right in saying that as a WordPress blogger who does not have direct access to your emails, it is WordPress who has responsibility and accountability for your the storage of details and therefore for a privacy policy.

GDPR

My understanding is that if you like, comment or share a post on this blog, you are permitting the use of your information by WordPress and their service providers.

The WordPress privacy policy can be found here.

The Jetpack policy can be found here.

Masha on A Sweeter Life Blog has generously allowed use of her words which cover this blog too:

“You may have by now gotten other emails regarding the GDPR, General Data Protection Regulation which was designed to protect internet users from breaches of trust. However, now the GDPR is making giving your data, consent to use your email and other data information optional, requiring websites to inform you within 72 hours of a breach.

So I just wanted to inform you that I’m a blogger, I don’t have a newsletter and I don’t have an e-commerce site, so this doesn’t really apply. But, I wanted to reach out to you and assure you all that you are receiving this email because you had previously subscribed to my blog giving your consent to receive my emails.

PLEASE BE ASSURED THAT I DO NOT SHARE YOUR EMAIL ADDRESS WITH ANYONE.

 And you always have the option to un-subscribe from receiving my emails.

Please feel free to get in touch with me for any questions you may have.

As always, I’m very grateful that you’re allowing me to share with you my insights and inspiration.”

COPYRIGHT MASHA G. ELLMAN 2018

Thank you for your continued support,

Claire x

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Most Informative Blogger Award goes to…..Jen Gilmour! #BloggersBash #AnnualBloggersBashAwards “Clipped Wings – Hear Some Stories of Survival” Book Review

REBLOGGING THIS TODAY AS THE WONDERFUL JENNIFER GILMOUR WON THE MOST INFORMATIVE BLOGGER AWARD AT THE ANNUAL BLOOGGERS’ BASH AWARDS YESTERDAY!! #Bloggersbash

Pain Pals

Clipped Wings – Hear Some Stories of Survival by Jennifer Gilmour

I was fortunate to be a given a copy of this book in exchange for a fair and honest review.  All opinions are my own.

“Our wings were clipped, our restrictions were made, our boundaries were tested but now we are free, aren’t we?

We look above in the sky at the birds and hope to be free.  But the birds make their nests in the trees high above, to protect themselves from predators.  Free birds must keep looking over their shoulders the same way all of us have to.”

As we reflect upon another year and celebrate the beginning of a new one, I want to share a slightly different book review with you.

519PUzFxnmLJennifer Gilmour is a young mum, entrepreneur, wife and author.  Her first novel “Isolation Junction” was published in 2016 and during the course of…

View original post 638 more words

Nurses’ Reunion, Remembrance, a very special place: The Fitzrovia Chapel

Dedicated to Kate

Nurses Reunion pin

Last weekend I gathered with a group of special ladies to celebrate 30 years since we had started our nurse training together.  Our school of nursing has long since gone, nurse training has changed beyond all recognition and neither of our teaching hospitals are in existence in their previous state.  But half of our nursing set gathered together in London, travelling from as far afield as New York, for a trip down memory lane and renewing/strengthening old friendships.

We trained at Bloomsbury College of Nursing and Midwifery and spent the majority of our time living and working between University College Hospital and the Middlesex Hospital, situated on opposite sides of Tottenham court Road.

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UCH opened its doors on the Gower Street cruciform site in 1906 and this Victorian red brick building remains imposing, if impractical next to its modern day counter part on Euston Road.  A wonderful lady, Lucie, gave up her day off in order to show this group of old nurses around a building that closed as a hospital in 1995, but for us still holds so many memories….UCH 1tunnels beneath the buildings from nurses’ home to hospitals, cockroaches (Yes, REALLY!), endless stairs and the founder’s portrait on the staircase encased by wooden panelling and doors.

It was written into the Night Sisters’ contracts that at the beginning of their shift they must close these doors, for if the doors were left open there would be 3 sudden, unexpected deaths in the hospital that night.  The building is now used by the medical school for research labs, but it was lovely to see the preserved nursery rhyme pictures on the once children’s ward and the stunning architecture.

 

Sadly the future of the beautiful old Middlesex Hospital building on Mortimer Street was not so secure.  It opened in 1757 and had further wings added in 1766 and 1780, but the whole hospital was rebuilt in the 1920s only to be closed in 2006 with the opening of the new UCLH. The building was demolished in 2008 and due to the financial crash, the site remained undeveloped for several years.The Middx

The only part of our building to still be standing in the newly developed Pearson Place, is the grade II listed hospital chapel and it was here that we gathered for remembrance, commemoration, cream teas and Prosecco!  It felt strange to walk into the sleek lines of Pearson Place (also known as Fitzroy Place).  So many memories surrounded us and we brushed shoulders with many ghosts – including one of our own, to whom this post is dedicated.

 

The Middlesex hospital chapel was a place for patients and staff alike, situated in the middle of the hospital, stunningly beautiful, unconsecrated, without denomination and open to all.  We saw laughter and tears, fear and pain, marriage and love within that small pocket of calm situated in the midst of a busy teaching hospital.  I remember singing in there during night shift breaks – not allowed I’m sure – and hiding out after my first patient death.  In order for the space to always be welcoming and never shut away, the main doorway had a special glass door fitted to comply with fire regulations (I believe) and yet to be visible every hour of the day, open for all.

The Middlesex

Still part of the hospital, unrestored….spot the glass door!

Today the newly named Fiztrovia Chapel has been restored by the developers and has a cultural focus, overseen and managed by  a charitable foundation.  During the period that the site was undeveloped, the old chapel was closed up and reopening it, introducing the outside air pressure and movement actually caused damage to much of the original gold leaf decor.  A huge restoration project followed and the foundation to maintain the chapel was founded.  It was through the foundation that we were able to visit the chapel and were given a wonderful historical “tour” by the lovely manager Sarah.

She gave us information about the history of the building and archive material that she continues to uncover, and in turn we were able to provide stories from our time during the 80s.  Whilst there, a group of physiotherapists who worked in the Middlesex Hospital 50 years ago arrived to view the chapel and share memories.  This little Gothic place of beauty, full of gold mosaic and stunning stained glass restored so lovingly by a local firm, costs £10,000 per month to maintain – but to so many of us it is priceless.  If you are ever in the vicinity of Mortimer Street (just off Oxford Street), or are looking for a wedding venue or a film location – the Fitzrovia Chapel is well worth a visit. IMG_1648

Emotions were high on Saturday – for memories, for each other, for friendship.  We worked hard and we played hard – there weren’t many central London night spots unknown to us. Anyone remember the Dreamboys? We do!  We lived together, we grew up together  and we probably shared some of the most intense times of our lives.  Many a time we found ourselves thrown in at the deep end at such a young age.  Our life experience by the time we qualified in our early 20s was way beyond that of many of our peers – we were pretty street wise!

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Have we changed?  No…not really!  At breakfast on Sunday one of the others said that although the saying goes that people change, actually it isn’t true.  Despite marriages, children and whole different lives, we all slipped back to being twenty year olds without thinking.  I had been anxious about going and the day before the anxiety levels were growing.  Whilst my first back surgery was whilst I was a student nurse and I had always dislocated, had migraines, anaemia and fainted – only one of my peers has actually seen me “disabled” by my condition.  It still feels like a big thing to get my head around, and whilst they are nurses and can care for me, I actually don’t want my mates to have to take me to the loo!  So hubby became an honorary nurse for the weekend – he knows them all anyway!

So life goes on and we all leave behind our own little stories carving out a slice of  history.  When the very fabric of the buildings that you made that history in have changed beyond recognition, the emotions are so mixed.  The memories of the nurses’ homes – one at UCH and one at The Middlesex – will always be with my friends (refreshed as history repeated itself when we got in to trouble for setting off the security alarms 30 years on – a stunned student let a group of middle aged women declaring “we used to live here” into the building!), alongside friends & colleagues, patients and relatives, skills gained, calamities forgotten.

The Rockerfellar

The entrance to the nurses’ home – the security guard arrived soon after!

I felt that those familiar yet different surroundings triggered feelings and long buried memories,  hopes and dreams, the best and worst of life.  Is this a familiar sentiment for everyone at particular stages of life?  I wonder if sometimes we get so caught up in the minutiae of what is happening today, that the amazing things already achieved and shaping our lives are (unintentionally) forgotten. Maybe one or two of those ghosts that we all have, be they loved ones or for us patients, would even give us a pat on the back and tell us we did make a difference.

Hoodie!

Complete with set hoodie, adorned with our nursing badge and red hood lining – the same as our nursing capes!

I know that some of my set read this.  Ladies, I say to you that it remains an honour to have shared my informative years with you and last weekend just reminded me how much I have missed you all (I always felt rather disconnected from the set on my return after 6 months away for back surgery).  To don our hoodies and reconnect was a privilege – always have been and always will be ordinary girls/women doing extraordinary work.

This is in honour of Kate, who died when her career was only just beginning.

Monday Magic – Inspiring Blogs for You!

Happy Monday, Pain Pals, and a belated Happy Mother’s Day to all in the USA.  I have just had a really busy weekend – that I plan to write about this week -and am struggling to sit upright today, so I’m not writing my normal preamble about life in the PainPals household. I’m not sure how much sense you would get out of me….

Monday Magic Inspiring Blogs for You! 14 may

 

So I will launch straight into the blogs that I have found for you….there is a wonderful life lessons post from 100 year olds, a letter to the person feeling suicidal, a letter from a mother to the child she carried but never met for Mother’s day and a practical post about moving your blog to wordpress.com.  I really need to sort this out myself!!  Finally I could not let the opportunity go by to slip another a zebra post for May – this book review is fantastic and I could not do better myself for the book that has become our family bible (no offence intended to anyone).

So sit back (I have a cuppa and slice of my Dad’s gluten free coffee birthday cake – made by mum!), relax and enjoy some fantastic bloggers’ writing.

https://www.mymeenalife.com/signs-need-new-rheumatologist/

https://writedownthemidddle.blogspot.co.uk/2017/08/pointing-to-myself.html

https://illness-to-wellness.com/2018/05/10/whylive/

https://thepurplealmond.com/2017/03/02/life-lessons-from-100-plus-year-olds/

https://weeklydoseofsue.com/2018/05/13/gob-stopping-comebacks-for-nitwits/

https://awriteradolescentmuse.wordpress.com/2018/05/14/monday-memoir-unforgettable/

https://en.blog.wordpress.com/2018/05/14/transfer-your-existing-domain-to-wordpress-com/

https://thisgirlsgotcurves.wordpress.com/2018/05/14/pathology/

https://wordsthroughthedarkness.wordpress.com/2018/05/13/mothers-day-2018/

https://scienceoveracuppa.com/2018/02/11/book-review-understanding-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorder/

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Please share these posts and leave some comments or likes – make a blogger very happy!

I look forward to writing you some more when the brain and body start to function…in sync!

Have a great week, Claire

 

 

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?!

Pin for later

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!

Zebra park

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

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!