Let’s Talk About Chronic Pain – The online #Scope community

For the next fortnight the focus for the Scope online community  forum is “Chronic Pain”.

To kick the discussion off, I am delighted to have my own poem “Today You Beat Me” featured and as the Chronic Pain Advisor hope to be “chatting” online with lots of you – visit the forum here Scope.

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Lets talk about chronic pain

Next week two of my favourite pain bloggers will be featured – Ali from Notebooks and Glasses and Barbara at  Back Pain Blog UK– so it would be great if you would drop by, give them some support  and check the community out!  Please pass the details on to anyone who might benefit!

What is Scope?

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Scope is a charity that exists to make this country (UK) a place where disabled people have the same opportunities as everyone else. Until then, we’ll be here.

Scope has recently reviewed research to produce a document called the Disability Perception Gap.  The resulting report examines the attitudes and prejudices that disabled people face and also the perception that the public has of disability.

The full report can be read here.

Visit the Scope website to learn more about the support, information and community that the charity can offer.

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Blog Tour and Book Review – “Blind Justice” by Alex Tresillian – Seeing is Deceiving #LoveBooksGroupTour

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THE NEW NIALL BURNET THRILLER!

Synopsis supplied by the publisher:

Superstar Paralympian Fiona Mackintosh Green retires from the track to set up Forward Roll, a charity helping disabled people achieve self-respect through sport. But is she all she seems? How is her charity spending its money?

Niall Burnet, visually impaired journalist, is sent in undercover to find out. What he discovers is a trail of illegal performance-enhancing drugs that leads from the charity to its major backer, global pharmaceutical giant Prince Rajkumar.

All too soon, Niall finds himself surrounded by key players who will stop at nothing to protect their interests. When a former athlete is found dead, he knows that one wrong move could be his last…

Book info:

Publication Day: 5th July 2018
Publisher: Urbane Publications
ISBN: 978-1911331117
Pages: 336
Category: Fiction, Genre: Conspiracy Thriller | Political Thriller | Action Thriller

Buying links:

Amazon UK: https://amzn.to/2vU1bdE
Amazon US: https://amzn.to/2HFMNep
Foyles: http://bit.ly/2HE6cfD
Waterstones: http://bit.ly/2HLBe1t

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Review:

This is the sequel to Eyes of the Blind, Alex Tresillian’s first novel about journalist Niall Burnet.  I have not read the first and feel that this can easily be read as a stand alone tale, but those of you who have read my reviews in the past will know that I personally prefer to have read books from number one. Personal preference!  In this case the storyline from the first book does continue into this novel, and whilst there is sufficient explanation to be able to easily follow, I would always recommend reading book one!  However the opening scenes set in Telford draw the reader into the plot, slowly allowing a catch up on the story of Niall and Miranda before the new investigation commences.

When this book popped onto my radar I was excited to read and review something that has different types of disability at the fore and keen to understand how the author would incorporate them into the storyline.  It would have been easy to have the disability element as a token nod, but I don’t believe that this is how the author constructs this story as the visual impairment of Niall and the new sight of girlfriend Miranda are central to the plot – as they would have been in the first book too.  However this is dealt with in a very matter of fact way, allowing us into Niall’s world as a blind man but more importantly into his world as a journalist – no saccharine coating in sight (no pun intended).

The introduction of Paralympian Fiona is handled differently as she is a celebrity as a result of her disability and her sporting success, but her disability is written about sympathetically without it enveloping her whole character.  As a relatively new wheelchair user, I was able to relate to certain elements very well.  These aren’t a major part of the storyline, neither should they be, but the descriptions of the lay out of her office furniture and the adapted shower room all rang bells with me – as did her need for help to get into her evening dress!  The public face and the private face are elements that anyone with a disability/chronic illness can relate to – no one wants the lack of dignity that can come with wheelchair use being played in public.  This is demonstrated so well as Fiona explains how she manages her bladder – as a young woman she wishes to have as much control over her body functions for as long as possible, and if this means “toiletting” every hour in order to avoid accidents, but also to avoid a catheter then so be it.  Again this is something that I relate to personally, as someone with a neurogenic bladder who tries to avoid self catheterisation!

I have to applaud the author for recognising that disabled people have sex lives!  This may seem a very odd thing to draw from the book, but there does tend to be a fear and embarrassment of recognising those of us with disabilities and chronic health as being sexual beings.  I’m not going to give any spoilers about specific relationships in the book, but will say that the growing attractions and feelings are described sensitively and with the focus on the emotions of any growing relationship, not on the abilities of either party.

The characters are all really different and make for an interesting cast as their back stories and current stories start to intertwine the more that Niall investigates.  Niall himself is loved by some of this cast and yet reviled by others, particularly some who have known him many years.  I actually admire Niall for sticking to his beliefs for right and wrong – most of the time! – and for striving for justice.  He certainly doesn’t take the easy route, extending himself beyond the original journalistic brief to expose the sports charity, when he realises that he could be onto a much greater story – the involvement of a major pharmaceutical giant in doping in athletes.  As an ambitious journalist, of course he is following the bigger scoop – but his human side is shown as he refuses to write an expose on the small sports charity that he believes can still do much good.  Niall is a flawed character in so many ways, but this makes him human.  He has mixed emotions about Miranda gaining her sight – envy, guilt, fear, delight – all swirling around inside him like a pressure cooker, yet he is unable to acknowledge most of them far less verbalise them.

Miranda, in contrast,  at times is a rather pathetic figure in the way that she comes across.  I think my feelings toward her were something of disbelief and anger that she is so apathetic about the miracle of gaining her sight, but it is only as the story progresses that I realised how hard it must be to suddenly be living in the sighted world after 30 years of being “cocooned” by both her lack of sight and her family’s protectiveness.  The descriptions of managing public transport in London for the time alone are beautifully written – navigating the underground for the first time is a challenge for anyone, but for a young woman who has never been able to see before this represents a whole visual stimulus overload!  Miranda is the character who grows the most throughout the book.  She is neglected by Niall on the move to London and this pushes her to examine what she wants from her life.  She feels unskilled and at sea in the sighted world, yet she knows she wants a purpose.  Her crippling anxiety both holds her back and drives her forward.  by the time I reached the end of the book, my opinion of her had changed completely.

The backing cast include Fiona’s chauvinistic sports coach husband – described perfectly to elicit strong feelings of dislike in the reader; Zoltan, Miranda’s knight in shining armour; the men, including Miranda’s father, who form an “old boys’ network” at the centre of the other charity in the story and believe that they are untouchable; the strong Dame Hillary, brought in to overhaul the British association for the Blind yet finding herself drawn in to conspiracies and secrets; and finally the cast of workmates at the Sports Charity, all with their unique insights into the organisation.

The theme of drugs in sports is very topical and the investigation at the heart of the novel is fast, gritty, at times uncovers a seedy, dark underbelly that is unpalatable yet fascinating.  The different attitudes to what constitutes “cheating” are interesting and the author indirectly asks the question “what is a level playing field?”.  Morals, greed and money, dreams and aspiration, drive and ambition – all are central to the plot.

There are loose ends at the end, and whilst this is not a criticism as real life does not come gift boxed, I do want to know what happens to certain characters……and I hope that these incomplete tales mean that Mr Tresillian is planning for a return of Niall in a third book.  I guess that this tells you how much I enjoyed it!! 4 stars

Thankyou to Kelly at Love Books Group for including me on this tour and to Urbane Publications for sending me a copy of the book.  Please note that all thoughts and opinions are my own.

 

About the Author

Alex grew up in rural England with a dream to write for a living which never quite came true. He has enjoyed incarnations as a theatre publicity officer, restaurant manager, teacher, teacher trainer, and curriculum developer. Along the way Alex wrote five plays that were performed by students including one, Never Mind the Rain Forests, that was enthusiastically reviewed (3 stars) at the Edinburgh Fringe. Another, Gavin’s Kingdom, received a professional workshop production at the Birmingham Rep. Plays Into Shakespeare, a book for English and Drama teachers that introduced students to the characters in Shakespeare’s plays through short modern-English ‘additional’ scenes, was published by First and Best in Education in 2007.Alex Tresillian Author Image

Alex moved to Abu Dhabi in 2008 with a Lebanese international education company that had a contract to train English teachers and develop curriculum materials. Latterly moved to their Academic Development office in Beirut and wrote two series of books for students from ages eight to sixteen – one on grammar and one on the art of writing. He is now living with his wife of many years in Worcestershire, his children pursuing careers in education, fashion, charity fundraising and web development in places as disparate as Beijing, London and Chesterfield. Alex also enjoys writing stories for his young grandchildren.

Social Media Links for Alex

Website: https://urbanepublications.com/authors/alex-tresillian/

Twitter: https://twitter.com/Alex_Tresillian

 

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

Into the Spotlight – Celebrating Equality and Diversity

Several weeks ago the lovely Angela on You Are Awesome blog wrote about finding herself in the spotlight unexpectedly and how it affected her.  Now granted she was propelled into blog superstardom with her “Discovery” and my experience that I mentioned to her was on a somewhat different scale, but it did literally involve a spotlight!

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Celebrating Equality & Diversity

 

This year we celebrate the centenary of the first British women getting the vote and my old school celebrates 40 years of co-education – what better theme could there be for a Commemoration Service?  Now who would be a “suitable” person to ask to speak to the current pupils?  Someone currently heavily involved in, or even Chair of the alumni association, and also one of the very first girls to start at the school?  Sounds perfect…except that would be me!! The first girls started in the sixth form in 1978, whilst we “little” girls started in 1979 – all eight of us….Judith, Justine, Joanna, Sandra, Heather, Rosalind, Justine (yes another one) and me, Claire.  My brief from the deputy head was to share some memories with the pupils – how hard could this be?

My first point of call had to be some of my previous partners in crime and I set up a Facebook chat with about 15 ladies who had been amongst the original girls in the first couple of years.  Wow!  We were all transported back and the memories & stories flooded out.  Where has the time gone and where did those little girls go?  I must say that it has been fantastic to rekindle old friendships – even if an awful lot of the memories were definitely not suitable to share!!!  It is really important with certain aspects of my connective tissue disorder – the fainting! – that I don’t allow myself to become too stressed, so I took a leaf out of my adult kids’ books and did a last minute.com with my speech.  “I only need to write a few notes” I assured hubby when he reminded me that the service was to take place in the town’s theatre.

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First Day at School – they no longer wear that blazer!

We arrived the next morning with instructions to go to the stage door in order to both accommodate my wheelchair and for a sound check.  Excuse me? Sound check?  This was starting to sound a little different to the services of my day!  I was shown where I would be speaking from – that is a lectern at the front of the stage, you know the one where the actors normally do their thing – the heights of the microphone were checked – I wanted to stand, but what I want and what my body does can change in a second – and then hubby and I were shown our seats in the stalls.  We would need to unobtrusively find our way to the stage at a particular place in the programme – hang on, is that me down as the final, summing up speech?  Coffee was called for.

We took our seats but not before I had a quick glimpse around the theatre and realised that it was crammed with teens reaching far into the gods.  How on earth had I originally thought that I was only speaking to a few students?  The headmaster took to the stage alongside the head boy and girl and they spoke of equality and diversity – the suffrage movement, the recent #MeToo movement and a changing tide in Hollywood, the Black Panther film, the gender pay gap, equality & diversity within the school’s own history – and I nudged hubby and murmured “I think I might have got the pitch wrong!”.

I snuck out – those of you who know me will laugh at this – with stick in hand and clutching hubby as we negotiated the stairs to the stage whilst being serenaded by a band singing Pink Floyd.  Yes, Pink Floyd!  I am sure that we only sang very traditional and, to our teen minds, boring hymns at Commemoration Day.  Now it was time for me to be quite literally be thrust into the spotlight and whilst I was wheeled on to the stage, I was determined to stand.  The thing I had not anticipated was just how bright that light was and how blinded I would feel – I wasn’t nervous when I went on, but the funny thing was that not being able to see the reaction of my audience was actually more unnerving that being greeted by a sea of eyes.  But I was able to use my own situation to perfectly continue the themes – a disabled woman speaking about literally growing up in a boys’ world.

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St Trinian’s party (late 80s) – knew those blazers would eventually come in useful!

I think it went well.  I spoke for considerably longer than I had anticipated and with some squinting was able to make eye contact with those in the stalls.  Memories were shared, from starting at the school as a 10-year-old – what were our parents thinking? – to learning to cope with the attitudes of certain staff members, to being given opportunities to row, join the cadet force and have high expectations of ourselves.  As I said above there were many stories that I couldn’t share – the elderly teacher who wore his PJs under his suit and threw the blackboard rubber at anyone he disliked; the ex para in charge of the cadet force who lost his temper in a geography lesson and jumped up and down on one boy’s back; the student teacher nicknamed mogul and taunted throughout the school; the masked raid on the tuckshop by pupils; the stealing of railway detonators which were thrown from train windows on a certain popular commuter line by pupils – the police came in to the school and we were quizzed.  But I could tell them about Heather being the first girl to row at the National Rowing championships and that she wasn’t allowed to camp with the boys –  instaed she stayed in a B&B with one of the male teachers.  Separate rooms – but can you imagine that today??  They heard about our lack of toilets and changing rooms, about being told when we got questions correct that we were now “honorary chaps” and that “those were the days when men were men and women were proud of it”.  We were called by our surnames – one of the girls shared a common surname with one of the boys in her class.  A particular teacher referred to them as Evans the superior and Evans the inferior – guess  who was who?  The gasp that went up from my audience with this story was huge – unimaginable action from a teacher to the pupils of today, but a story used to good effect by the girl involved when she has given sexual equality talks over the years.

I did share the story of the school hall being torched by a disgruntled ex pupil as it made the local paper as an Arson headline, and the prank with the dead cat being nailed on the back of the head’s study door.  arson.jpgBut I made them promise not to do anything similar!  I hope that today’s pupils saw that whilst at times our early education was unconventional and certainly marred with sexism, it set us up for a world in which we would be able to fight our corner and where we shouldn’t let others put us down.  This was just the norm for us – and I don’t believe that many of these old school masters thought they were being sexist or misogynistic (in fact would be genuinely upset to read these words associated with them), but actually didn’t know how to approach girls.  Of course we did play on this at times – the periods that lasted all month in order to avoid games or certain lessons, awkward questions in biology lessons – the boys did a pretty good job here too!

One girl said that she went into accountancy because she thought it was the type of career “expected” of her.  There were jobs that were considered “unsuitable” and I actually think that becoming a nurse rather than a doctor, as I did, was one of them.  I told the pupils that one of the original eight left to become a dancer and she high kicked her way across Europe, finishing as a dancer on the Moulin Rouge.  This would have had some of our masters turning in their graves – but it was what she wanted to do.  She is now a clinical psychologist!  Words that came up continually from the group chat were “strength of character” and for many of us we did develop an inner strength that would go on to serve us well in future male dominated environments.  For me that would be holding my own as a “mere” nurse in the then still male dominated world of doctors in the London teaching hospitals .  But of course this wasn’t the case for all the girls and some found the testerone fuelled school difficult to navigate.

Above all I hope that my moment in the spotlight showed a younger generation a slightly lighter, but nonetheless very sincere glimpse at changes in equality and diversity in very recent times.  For me….well I was back in my wheels in the foyer as the youngsters started to leave and I was given lots of thanks, a few of the older pupils and the staff said they would be talking about my stories for months and we were then invited for a drink with the head and other VIPs!  Would the head ever speak to me again, let alone allow me back in to the school – he said he was wondering where a couple of stories were headed and will hold me personally responsible for any cats on the school premises!!  Several of the sixth form girls said that they couldn’t believe what we girls had gone through – although to us it was just school! We knew no different.

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My official photo announcing me as Chair

The spotlight effect that Angela spoke of in her piece was different for me.  I am proud to have stood up (literally, as was hubby who was offstage with the wheelchair just in case) putting my disability on show, to be the first girl to have gone through the school and to have represented us “trailblazers”, and to now being a female Chair of the alumni – but also to have also done myself proud, overcoming some the demons  that recent years have dealt out. The applause when I finished was lovely, but it could have been that the kids were just happy that I had finally shut up!!

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The Blessed Project

Flicking through the blog posts on the blog share threads last weekend (Big Up Your Blog), one from Susie Lindau’s Wild Ride leapt off the page at me.  She has invited bloggers to join her in a very special, positive experience – The Blessed Project.

Susie says “Last year, I posted a list of blessings and included a few photos. The exercise took me to a place in my heart filled with love, gratitude, happiness, and sparkly things. My favorite! For the time it took to create the list, it banished bad news, headlines, and normal everyday frustrations like surfing to buy the perfect gift which is as slippery as Elf on a Shelf.”  What could possible be better at this time of the year than to focus on blessings…and some photos to embarrass your kids??

So where shall I start?

My family naturally…..hubby Duncan puts up with a lot, particularly on those flare days when I am horrible to be around, but he is always there.  He spends half his life running me to different hospitals across London and never (well almost never) complains and is always there to pick up the pieces – or just to pick me up!!

The kids…..it is challenging having the student engineer living back at home after 3 years away and my kitchen is living proof, but he is getting better at catching me before I pass out.  The middle one – do all middle children play on the old adage that middle borns have such a tough time? – is due home from uni next weekend and it will be lovely to see him (I think – dirty washing???).  We haven’t heard much from him, but presume that is a good thing – although he does send regular pics to his sister.  Finally my baby – my lovely girl.  She drives me mad with her untidiness, but she looks after me over and above what a teen should have to do for her mum – and constantly plays down the fact that she also has the same condition.

My parents – they live up the road and without them our lives would be so much harder on so many levels. Thank you, Mum & Dad!

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Their first and only selfie!

My wheelchair – yes really!  It has given me a new lease of life as my mobility has decreased and pain has increased.  I have spent the last few years struggling to maintain some independence and to walk.  But the back pain initially and then the disabling effects of 2 back fusions (they really did add to my problems) and more hip dislocations have led to first funky walking sticks, then Smart crutches and now my wheels.  Not what I wanted during my 40s, but I can go out and join in! My eldest plans on taking me ice skating in it but I didn’t like the wicked glint in his eye when he suggested it!!

Friends who don’t give up on me when I blow them out, who stick by me and let me feel like the woman I used to be.  I also am very blessed to have a whole virtual friends family – bloggers and the chronic illness community who give such support and friendship…and “get it”!  Meeting with online Book Club friends at our annual birthday party was a treat.

I feel blessed to have found some kindred spirits this year at our EDS UK support group.

My furry friends – we have been blessed with some extra time with our elderly mutt, Sam, due to an understanding vet and painkillers (yes, for the dog!); but also our surrogate dogs, Chester who I love like my own, and Prince – both come round every week for walks with hubby and cuddles with me!

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Samson

30 years on – meeting up with old school friends and feeling the years just slip away.  Hopefully staying in touch….have already met up with one and his family.Class of 87 pic

Finally….staying with the old school theme, I feel very blessed as the Chair of our alumni committee to have been invited to some wonderful events (Henley, the school drama) including the beautiful Carol Service last night in the parish church.  Talking to some of the parents and staff after, over mulled wine and mince pies, we all said that whether we were religious or not, it was a lovely way to start Christmas proper – putting aside the commercialism for just a short time and enjoying some true Christmas spirit.  There just might be a bit more of this spirit at the pub next week when I go to the One Term On event, for the youngsters returning after their first term at university…..won’t be staying too long as this old bird might really cramp their style!!!

 

Why don’t you link up your blessings with Susie?

Join the Blessed Project and Get Featured!

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The Blessed Project

Monday Magic – Inspiring Blogs for You!

Another week has flown by, there have been yet more storms – why did ours in the UK get the name Brian? – more Brexit and the increasing #MeToo campaign.  In our house we saw the end of the German exchange as our lovely girl and her friends’ student partners returned home.  Absolutely exhausted!  The girls are now coming down off a high and the start of half term is a bit of an anticlimax, particularly with mock exams looming.

Our girl is studying art – you probably know already as this proud mum has posted pictures, much to the disgust of my girl – and has a portfolio to work on and also a sketchbook for an interview.  The house is destined to filled with paints, charcoals, paper and panic!  I am doing something this week that I don’t normally, but I’d like to shamelessly introduce you to some other talented youngsters – the triplet daughters of an old school friend.

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Art By Three

They have  been featured on Sky Landscape Artist of the Year, and are currently working with the UK’s National Trust on the Scotney Old Castle campaign. Whilst not strictly a blog post, I have included both their website and the campaign site as I strongly believe we should support and nurture young talent – I am not asking you to donate but to take a peek, maybe follow them on Facebook and Instagram…..

The other posts are all fantastic and range from an article that fits with the #MeToo campaign but stems from a personal story of surviving from Illness to Wellness, to acupuncture at My Migraine Life to social well being from a new blog to me Little Adventures NZ.  There are a couple here that are particularly great reads for you ladies – I love the look at Envy on Wendy Fairy Art – and all you mums and dads must read “My Husband Doesn’t Help” from the Coffee Mom.  It is not what you think it is!!!  Add in some OCD at The Thyroid Damsel and what more diversity could you want?!

So it is that time to grab a cuppa, turn your mobile to silent and spoil yourself with some great reads.  Please comment, share and follow some of these lovely people if you enjoy their work.

https://www.jumblebee.co.uk/scotneyoldcastle1010campaignwithartbythree

http://www.artbythree.co.uk/

https://littleadventuresnz.com/puzzle-piece-series-social-well-being/

https://wendyfairyart.com/fairieartblog/sistership-wound-called-envy-deal/

 

https://www.thecoffeemom.net/2017/10/20/husband-doesnt-help/

http://notebooksandglasses.com/sitting-disability/

http://coffeeandcarpool.com/be-less-stressed-as-a-special-needs-mom/

http://thethyroiddamsel.com/?p=310

https://mymigrainelife.wordpress.com/2017/10/22/does-acupuncture-work-for-migraine/

https://illness-to-wellness.com/2017/04/07/showing-up-for-sexual-assault-survivors/

https://thepainfreelife.com/life-interrupted/the-death-of-a-marriage-the-year-that-changed-everything-part-1/

Have a great week,

Claire x

Monday Magic - Inspiring Blogs for You! 23 Oct

 

 

 

 

My first forays with Motability

A little while ago I mentioned my face to face medical review for my Personal Independence Payment and I had convinced myself that my standard rate would be reduced to nothing.  I was geared up to go to panel and fight my corner, sitting here awaiting that dreaded brown envelope.  When it did flop through the letterbox, I couldn’t even open it, I felt that sick!  Duncan did the honours…..and I was stunned and delighted in equal measure to find that I have been awarded the enhanced rate for both mobility and care needs.Motability Forays

Of course I should be on this rate as my health has deteriorated so much in the last couple of years, with Ehlers Danlos zebras galloping at full pelt through my life.  But the system is such that the applicant is made to feel they need to prove that they can’t jump through those hoops the DWP want us to.  Anyway it has taken a couple of weeks to sink in, and to investigate the benefits to using the Motability Scheme  – “The Motability Scheme enables disabled people to get mobile by exchanging their mobility allowance to lease a new car, scooter or powered wheelchair“. Last week Duncan suggested a trip to Peterborough – which initially didn’t thrill me – but it was actually to a Motability show….again probably not my first choice for a day out!  But I arranged the impromptu visit to our friends that I wrote about on Monday Magic, and this would mean only driving one way on the day so off we went.

I must explain that Duncan used to work in the motor trade, so our car has always just turned up, sometimes been sold, often changed at a minute’s notice, but I have never really had anything to do with choosing a car.  Of course this time our needs are very different and actually it was very helpful having many of the manufacturers who take part in the scheme under one roof.  The volunteers for the Motability charity couldn’t have been more helpful and there were plenty of them handing out goody bags full of useful information.

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The exhibitors included motor manufacturers, mobility scooters & electric wheelchairs, and companies who adapt the vehicles to your needs.  We were able to book a test drive – although only in one vehicle as slots were limited and had been booked up by lunchtime.  For us the real value was trying the vehicles for size without trudging from one showroom to another, and I have to admit that I hadn’t realized just how difficult it would be to find a car boot that would accommodate the wheelchair alongside shopping bags for those retail therapy moments, or a dog!

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Boot mounted wheelchair/scooter lift in action

The MPV type vehicles that don’t require a large down payment just did not give us enough boot space, and we actually could not fit the wheelchair into one jeep  – it is important to remember that this car is not yours, it is effectively a leasing agreement albeit an excellent one, so long as you don’t spend out too much in the first place as the car is handed back after 3 years.

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Ramp adaptation for wheelchairs & scooters

However the sky is the limit and if you want to put down a large payment intitially, it is possible to have a plush car with all the trimmings – all down to personal taste & finance.IMG_20170909_133122830

Having said this, we discovered that there are some excellent deals with some requiring little or no down payment for a really great car.  The show definitely helped us to understand what we didn’t want/need and has ultimately this week helped us to choose and order a car that fits my needs on the scheme.  With my back problems and the spinal cord stimulator, the seat position and shape is the most important thing – particularly the headrest.  The electrode in my back which helps to control my chronic pain is very positional, so I only have to have a headrest in a car or the cinema push my neck forward, and Bang! the scs might IMG_20170909_133108400just as well be turned off as I can no longer feel it.

Sadly the downside is that when my new shiny, estate car (yes, an estate that accommodates my wheels, my shopping and the dog!) arrives, I currently can’t drive it!

 

Little post script……I saw a couple of great looking electric scooters too.  My fave was the Genny, but at £16k it is just not going to happen; but I wonder if any of you out there have this nifty little number – the Go Chair ?IMG_20170909_161956070_HDR

Monday Magic – Inspiring Blogs for You!

Monday Magic

Good Morning, all!  Hope that those of you enjoying a Bank Holiday are having a fantastic day, and that everyone else has had a great weekend!

The weather is beautiful here and we have a family BBQ planned for later in the day – coincidental, but it just happens to be my parents 52nd wedding anniversary.  Dad would tell you that he would get less for a life sentence!!

A very good friend contacted me earlier in the week with the sad news that her mum had died.  She has been living in a nursing home for several years now and has gradually deteriorated, but in recent weeks she took a turn for the worse with a bad chest infection and just wasn’t strong enough to fight it. This week has been very hard for my friend, her brother & sister, and particularly her dad.  They had been married over 60 years.  It struck me that no matter how old or how sick a loved one is, the sense of loss at a death just can’t be anticipated.

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Beautiful bank holiday Monday!

When I received that message my own mum was here and I should probably point out that we have a great relationship.  She has been staying with me whilst the family have been away and has effectively been my carer again! Talk about turning the clock back, becoming the child again.  I felt so dependent physically and even a short car journey left me struggling, but it never fails to amaze me how that parent/child psychological bond is always there.  No matter how old you are,  it is always possible to feel like a teen again! A naughty teen at times!  Seriously though, thanks mum, I couldn’t have managed without you.

This week I have been able to spend time finding new groups and meeting new bloggers online.  So the inspiring blog posts I have for you are from a mixture of sources – one of them being the Facebook group Big Up Your Blog! – run by Suzie from “Suzie Speaks”.  I have included her post about self censorship on our blogs – it is something all bloggers should read, no matter what your content matter. I think that I have probably failed miserably on all counts!!  There is also a beautiful poem about a relationship break up, the role we play ins supporting new mothers emotionally and a shout out for a new disability campaign for parents later this year.

So as usual, grab a coffee, sit back and enjoy…..

https://suzie81speaks.com/2017/07/08/should-you-self-censor-your-personal-blog/

https://fancypaperblog.wordpress.com/2017/08/22/mental-health-be-kinder-to-new-mothers/?fref=gc

https://iwillnotliveinvain.wordpress.com/2017/08/26/vaguely-nauseated/

https://mindovermetablog.wordpress.com/2017/02/22/why-its-sometimes-good-to-look-back/

https://jellified.wordpress.com/2017/08/25/from-the-start/

https://addandsomuchmore.com/about-the-name-add/

https://nolightwithoutdarkness.com/2017/08/23/when-your-mental-health-affects-your-job/

https://fibromyalgia-chronic-pain.blogspot.co.uk/2017/01/to-reduce-stress-and-pain-in-your-hands.html

https://cfsmeandkingdomliving.wordpress.com/2017/08/27/redefining-the-dark/

http://blossomandcompany.co.uk/italkdisability-campaign/

Please remember to comment, check out other posts on these blogs and find a new writer to follow,

Claire x

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Models of Diversity – Challenging Stereotypes

I recently came across this young lady Selina Towers and was initially drawn to her story as she lives with the same genetic condition that I have.  When I read a little more I couldn’t help but be struck by her zest for life and her desire to raise awareness of the beauty of all body types…..

Only this morning BBC Breakfast covered the story of former Vogue editor Alexandra Shulman who has this week posted a selfie wearing a bikini.  No great shocks there, except that the picture is unfiltered and Ms Shulman aged 59 looks like any middle aged lady on her hols – or rather she does not resemble an airbrushed model.  Do these “perfect” images often published on social media influence the body image of those viewing them?  Last week actress Kate Beckinsale spoke about giving positive advice to her daughter on body image and the importance of not trying to live up to an impossible stereotype. In Australia a new campaign targeting parents of pre school age girls, aims to celebrate body shape and size diversity, celebrate skills and personality traits, as well as teaching parents healthy language around food and bodies.

In this article Selina looks at disability within the modelling and fashion world, and how disabled models could challenge stereotypes, if given a chance.

Are Disabled Only Runways A Good Way To Showcase Disabled Models?

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Selina Towers – photo from Models of Diversity

A year ago, I wouldn’t really have thought about it, I would have just thought it was an absolutely brilliant thing bringing to light the beautiful disabled models that we rarely see on the runway but then, I didn’t truly understand how it felt from a disabled person’s point of view.

I was born with a condition called Ehlers-Danlos Syndrome which didn’t start to really affect me until I was around 10 years old, but even then it was only the odd dislocation here and there. Although it did affect my every day life and limited what I could do, I didn’t really consider myself as having a disability, just some fairly cool party tricks where I could bend bits of me that really shouldn’t bend that far! However last year, I had an unfortunate bout of flare ups with unfortunately led to me having to become reliant on a wheelchair.

For the full article go to Models of Diversity

Chronic pain, opiates…& where does that leave me? (Part 2)

continuing from yesterday’s republished post, this is the follow up written at the time with a few additions and adjustments for today…..

So where does this leave me?  I am the person sitting in that seat desperately in need of help.  This “me” refers to all of us experiencing chronic pain whatever the reason – pain that has lasted for longer than 12 weeks – 6 months depending upon who you read!

From that first visit to our general practitioner to the physio to the surgeon, it can feel like everyone is giving conflicting advice.  I don’t blame the GPs for starting so many of us on opiates.  When the gabapentin or lyrica isn’t sufficient, and the amitryptilline doesn’t touch the sides, there isn’t much else left to turn to when this desperate individual is begging for help. images (20) In the same way, how many of us have surgery out of desperation?  I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more!  I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person.  The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.

We’re prescribed tramadol, sevredol, oromorph, MST, oxynorm/contin, and at first there is usually some relief.  For me the drugs never completely masked the pain and the dose of pregabalin was soon topping the scale and the oxynorm started creeping upwards soon to be replaced with the long acting variety.  I smile now when I think how at work the “control” drugs are kept in double locked cupboards and yet my bottle of oxynorm was stuck on the kitchen window sill to take a quick swig when the pain became too much.  My GP never tried to limit amounts and gradually increased the dose over the years.  I had also been prescribed mirtazepine to take at night – another antidepressant drug prescribed by my old consultant.  The side effects were horrendous.  I tossed and turned all night yet was unable to function the next morning to the extent that I knew the kids were in the room, but I couldn’t open my eyes.  Eventually I weaned myself off. But at my very first appointment at St Thomas’ Dr P took one look at my meds and informed me that the opiates would have to be reduced.  Yes, he did explain why with the reasons from part 1, but I think that everything that came after was a blank.  There is a feeling of panic – how on earth will I cope with less than I am taking?  This isn’t even working!  A fear deep in the pit of your stomach as the realisation that you may be forced to try to tolerate higher levels of pain hits home.images (21)

St Thomas’ hospital, London, policy for patients on the spinal cord stimulator programme is that you should not be taking any liquid or injectables; breakthrough doses should be weaned right down before the trial; and high doses of long acting opiates should be weaned down (MST & oxycontin).  I don’t know why different hospitals have different policies.  In my experience over the years consultant preference has always played a huge role in this type of policy.  I have no idea how other countries deal with this issue, but I do know that the USA carry out a huge number of  nerve transmitter inplants each year.  We all have different pain and maybe a one policy fits all is not the right way to go.  Within our group a lady barrister had a chronic bladder problem (interstitial cystitis) which left her with constant raw areas on the bladder wall.  Her pain had very specific flares resulting in a trip to A&E approx monthly and pethidine injections until the flare subsides.  She was unable to imagine how she could possibly cope during these times of crises.

Telling us that we must cut back is the easy part. Doing it is somewhat trickier.  There will be several people on SCS facebook support groups at any one time who are currently struggling as the pain spirals up as the drugs go down.  It is tough on nearest and dearest too.  Every time that I have lost the plot in recent weeks, my daughter looks knowingly at the rest of the family and mouths “drugs” – even when she deserves to be yelled at!  So is there a simple answer?  I guess the obvious would be not to prescribe opiates in the first place, but until a suitable alternative becomes available, I don’t believe this will happen any time soon.  So meanwhile, we dependents will have to ask you friends, carers and medics to bare with us as we attempt to wean down our dosage, to offer love, support and most importantly, please don’t judge when the going gets tough, as it certainly will.

Update 2017:  I was still taking oxycontin when I had my scs trial and the permanent implant, although I had managed to reduce the dose.  Over the following months, with huge support from my GP, I continued the process of weaning down my dosage – afterall one of the reasons for having the implant was to be free of drugs.  Bloody mindedness stepped in and I came down the doses considerably quicker than my GP wanted me to, but be under no illusion, it was not easy.  Upset stomach and cramps (for someone with EDS gut issues normally), sweating (additional to POTS symptoms), concentrations issues, insomnia (worse than previously) and more.  I met up with several friends I mad on the pain course last summer, and whilst we had all had different experiences with the scs, we were all agreed that we felt better since ceasing opiates.  We still have chronic pain.  But we have found that we have better nights (remember I can’t have my scs switched on at night so have no relief for my nerve pain) – not necessarily sleeping more, but better quality sleep – and the feeling of being oneself again.

For me a noticeable difference has been an increase in the pain associated with my Ehlers Danlos syndrome in my joints and soft tissues since stopping the oxycontin.  I believe that the opiate was masking my deteriorating condition and I am now having to learn to manage this without resorting to strong opiates again.  On bad days it would be very easy to open those bottles of oxynorm again!  download (1)Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it.  But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.

I plan to cover some of the more recent innovations in neuromodulation and also pregabalin?Lyrica – please send me your thoughts or suggestions!