Books, Reviews and Finding a New Purpose through Chronic Illness

When a person loses their “raison d’etre”, what do they become? Blood and bone and tissues.

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I have just watched a young athlete win her heat in the European championships with an enormous Personal Best and the delight on her face, in her body language, in her voice were infectious and special.  The training and the hard work that she has put her body and mind through over weeks, months and years is paying off today.

The thing that drives each and every one of us to get out of bed in the morning will be individual and change at different times of our lives.  Dreams and aspirations aged 20 will alter, expectations change with life experience and maturity.  But what happens when that reason for being feels like it is “stolen’ away by chronic health issues?

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Personally I found that something that affected me greatly was medication.  The combination of strong anti convulsant drugs combined with opiates used for nerve pain combined with a night time drug usually used in severe depressive disorders, at times created side effects that were as difficult to cope with as the chronic pain for which they had been prescribed.  The combination of pain, sleep deprivation, brain fog and inability to concentrate just felt like a recurring cycle –  a domino effect as one thing caused another caused another in ever decreasing circles.  I didn’t know whether I was coming or going and the antidepressant drug, mirtazepine, left me unable to function in the mornings – my kids, the younger two at primary school then, would have to physically get me out of bed and then I would drift off into semiconsciousness sitting on the loo.  I could hear them talking to me but I just couldn’t open my eyes.

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Photo by Harman Abiwardani on Pexels.com

Slowly but surely it felt as if the ordinary things in life were being stripped away, including my lifelong passion for reading.  I have always had a book or two on the go, and no matter how late is is, I always have to read at least a couple of pages before turning the light out to sleep.  Over a period of a couple of years I found my ability to read a book diminished – despite being awake until the early hours night in, night out, I was unable to complete a book as I read the same page over and over.  What the heck was happening to my brain?  A friend bought me a magazine subscription for my birthday and I couldn’t even manage to read a whole article.  But my pain was so severe and uncontrolled that my inability to read was the least of my problems, as some days I couldn’t imagine living another week like this let alone another 40 year years.

When joining the pain programme at St Thomas’s hospital (London), before I had my spinal cord stimulator trial, I had to agree to reduce my oxycontin (oxycodone – double strength synthetic morphine) with a view to coming off it entirely.  I have written about the current opinions re use of opiates and chronic nerve pain before and about my “withdrawal” – that is not what I want to concentrate on here.  My opiate dose reduced over a period of time and gradually my sleep improved along with my concentration.  How is it possible that my sleep got better with no pain relief (I cannot have my scs turned on at night)? I had not realised just how huge an effect the drugs were having on my sleep and general well being – and not a good one!

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Gradually my brain has allowed me to start reading again and to finish a book or an article.  I found a local book club that meets monthly in the pub and we read any genre as long as it is a recent publication, so that no one has already read it – no issues to be had with discussing someone’s all time favourite!  I love the fact that we don’t take our discussions too seriously and I have met some lovely new friends.  My love of books led me to some social media book groups and it was here that I discovered the world of reviewing.

The fact that authors and publishers are generous enough to share their new pieces of work with an amateur reviewer like me feels amazing.  I have discovered the joy of receiving an advanced copy (ARC) of a new piece of writing and being one of the first people to read it.  Books have always been a part of my home and as a bit of a puritan, I would only ever read an actual book – I like the feel of a book in my hands, the smell of new paper and the beauty of a new cover and uncracked spine.  But……becoming a book reviewer has converted me to a Kindle user.  Don’t get me wrong – nothing competes with a brand new book or a well thumbed favourite classic – but I do appreciate having so many books available in one place and as my ability to hold a book has worsened, the ease and weight of a Kindle is perfect, particularly when lying down!

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I know that authors are grateful to the band of book reviewers that are out here in the blogosphere, on goodreads and Amazon.  We help to get their titles out in the public domain.  For me though, I have so many reasons to feel grateful to these wonderful authors, publishers and social groups as becoming a reviewer has given me back a role and with it a sense of worth.  The first time that I saw my name on a banner for a blog tour, I knew that I could still make a difference.  I might not be able to hold down a job due to my chronic conditions and the unpredictability of my symptoms – but this is something I can do!

There still are days when I am unable to read, and others when I might have read the book but brain fog stops me from getting a review from my head onto paper.  I have had times when I will know that a deadline is looming and the stress of being unable to write will increase my symptoms, thus starting a vicious circle.  But I appreciate that I have been gifted someone’s work, something precious to them that they have poured their heart and soul into.  I am entrusted to care for it and I will always do this.  There may be times when I struggle to get a review written, literally when I have dislocations, but I will always read a book sent to me and give a fair, honest review.  In school many years ago, I was taught how to write a book review and I have never quite been able to shake off my old teacher’s instructions – some of you will know that this means my book reviews can be a bit long.  But if I have been given an author’s “baby” the very least that I can do is spend the time to give it due care in my review.

Books

Reading and writing has given me a new purpose.  It can never take the place of my lost life, but it can sit alongside it and over time reviewing has become an important motivator for me.  I am reading a huge variety of genres, some that I would never have chosen myself and thoroughly enjoying expanding my horizons.  I have discovered audio books and use these to help motivate me when doing physio and exercise plans – I can be often be found pacing my neighbours’ treadmill whilst listening to a thriller!  It isn’t easy to do the necessary exercise to keep conditioned when everything hurts, but a good drama or mystery certainly helps to distract from pain and dodgy joints.

 

At times living with a chronic illness can roll one day into another into another,  but amidst the fatigue, pain and failing body, I believe that it is important to have a reason to get out of bed and keep the brain “moving”.  For me reading and reviewing has given me a new “raison d’etre” – something to keep my brain working, to feel some pride in and to appreciate my self worth.

TBC

 

Thankyou to The Book Club on FacebookTracy Fenton, Netgalley, Love Books GroupKelly, Justine Sha at St Martin’s Press and the many authors and publishers who have entrusted me with their work.

Book bloggers

pile of hardbound books with white and pink floral ceramic teacup and saucer

Photo by Ylanite Koppens on Pexels.com

WEGO Health Awards – I have been nominated in two categories! #WEGOHealthAwards

2018-Awards-46This week I have been surprised and a little overwhelmed to find that I have been nominated in 2 categories for the WEGO Health Awards!

These awards are particularly special as nominees are described as a “Patient Leader” and “Advocate” – and I find myself mentioned alongside some Health blogging royalty.  A huge honour and very exciting.

“WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network. The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.”

WEGO nomination

When I was first medically retired, I found the amazing world of bloggers and completely unexpected online support from those who had been through similar health experiences.  Strangers who understood – I was bowled over that so many were happy to share experiences & lend an ear, but also to how many are living everyday with a variety of health conditions.  This is what inspired me to start PainPals – if I can offer some support as well as take it, give friendship as well as make it and offer some words (I stop short of saying wisdom) and humour about living with a family and chronic illness – then I am happy!

From the blog has come working with the disability organisation Scope, and I have been so pleased to be able to be the online Chronic Pain Advisor – even though my own flares have kept me away at times.

So here I am, nearly 3 years on from my spinal cord stimulator implant and so nearly 3 years on from starting this blog.  I find writing therapeutic on so many levels and find myself nominated for “Best Kept Secret” and “Best in Show:Blog” – thank you so much!

If….you would be happy to have a look at my Nominee Profile and endorse me, that would be fantastic. Take a look at some of the other great nominees too!

Endorse me here: 

 

 

 

Be the Best Version of Yourself

I’m in the midst of a flare.

More specifically the pain from nerve root damage in my back is uncontrolled.  Driving me insane! Those of you who have been Pals for some time will know that this pain is usually tamed by my spinal cord stimulator – an implant that scrambles the pain signals to my brain – but this week there is a battle going on between my body, the stimulator and my head…..physical, psychological and emotional.  The heat and humidity is ensuring that the other pains in my joints and soft tissues are also flaring and my autonomic nervous system has frankly gone haywire.

The changes in air pressure and temperature have always affected the metal skeleton that bolts the bottom of my bony spine together.  This spinal fusion currently hurts – it hurts at the immediate vertebra level above the fusion (my EDS means the spine overextends even more due to the bones below being fixed); it hurts in the bones that have been cemented and screwed together with titanium nuts and bolts; it hurts in the surrounding muscles and soft tissues trying to hold the whole lot together.  In fact as it starts to feel more stormy, I am certain that the titanium is about to break loose and rip through my skin, which feels like it is stretched tighter than a drum.

 

 

 

I feel that I should at least be able to use this time and be useful. Write, read, catch up – but the symptoms have a way of robbing that time and creating a thick pea souper of brain fog and fatigue.  Concentration is poor and I seem to spend periods of time lying on the floor, unable to do anything – this post is taking hours to write.

I am irritable, stroppy, snapping at the family.  My patience level is zero.

I feel that I let myself and others down as I crawl between the sofa and the floor and bed.  I know that staying still is the worst thing to do, but is is tricky to keep up that physical exercise that we are told we must do when in the thick of a flare.  There is so much advice out there for coping with flares and chronic pain, the majority well intended, but there is no one size fits all or one quick fix.  We are all different.

I have made this flare worse!  Wise? Probably not.  Worth it? Definitely!  Tuesday evening we attended Prize giving at the lovely girl’s school  – she protested that I didn’t need to go,  but I was determined I would see her mount the stage!  It was hot, there were performances, there were presentations to the year groups, there were presentations and words about every girl leaving the sixth form, there was the guest speaker’s speech.  Then there was yours truly sat in my wheelchair – slap bang in the middle of the front row!  A perk of needing more space to accommodate your wheels, but a definite disadvantage for quietly creeping out.  When the dodgy shoulder slipped out of socket and the neck and whole arm started to shake with spasm, I couldn’t even have a sneaky puff on my Medipen CBD vape – best birthday present ever!! (more of that in another post). Might have raised a few eyebrows!

It was tough sitting still for so long and I had the feeling that my head was too big and heavy for my neck to support – lollipop head, but the guest speaker, an old girl of the school, left a lasting impression.  Currently a senior figure in one of the “Big Four” accounting organisations, she spoke to the students about achieving their potential in whatever they chose to do – she said that whilst she knew she would never be saving lives, making significant discoveries or winning a peace prize, she had tried to be the best version of herself.

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“Be the best version of yourself” – isn’t this something worth striving for no matter our individual circumstances? I have been thinking this week that even with a chronic illness there still a best version of you and of me.  It may not be the same version from 20 years ago, and it sure as hell isn’t the best version that I had envisaged, but isn’t that true for everyone?  Circumstances change and so do we.  The 18 year olds who released balloons from the drinks reception after the ceremony have their lives ahead of them – exciting futures that will mould them and change them.

I won’t lie – the best version of me has not been a pretty sight nor one I particularly like this week! But it is something that I will strive for, and if my semi-adult kids can learn from this and try to be the best version of themselves, then I can be happy.

I’m in the midst of a flare – but it will end!

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Best version of yourself

 

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June Link Up Party with A Chronic Voice

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I have been saying for months now that I would get my act together and join in with Sheryl’s Link Up Party over on A Chronic Voice…..so this is finally me getting my act together, just in time to sneak into June!  Sheryl provides prompts so that we bloggers can learn just a little bit about each other – and ourselves!

Prompts for the Month

  1. Reminding
  2. Pacing
  3. Surrendering
  4. Improving
  5. Flowing

 

Reminding

Over the last couple of weeks my kids lives have been galloping at  a great speed, reminding me that I really am that middle aged woman who stares out from the mirror!  The household exams came to a finish this week as our girl took her final GCSE – as a parent I have been through them 3 times and that is it, no more!  Then my baby went off with her bag containing a party dress, shoes and makeup to get ready with friends for their end of year party – I doubt that she will let me post a picture, so you will have to take my word for it that the girls looked beautiful.  Reminding me how long ago I was 16!

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I have been allowed to post – my lovely girl and her beautiful friend!

Son number 2 came home from his first year at university sporting a slightly shaggy, slightly ginger beard and looking skinnier and taller.  Last night the hall was suddenly full of very large shoes as a group of 19 year old males gathered for drinks and football before heading off to a party. “Don’t wait up!” reminding me yet again that my youthful days of partying are long behind me.

The final straw came in the form of a large white envelope addressed to son number 1 bearing the stamp of Companies House.  “This is really happening” said my girl at the realisation that her annoying big brother has finished university and is entering the big wide world with a tech Start-Up! Reminding me that I really do have adult kids!

Pacing

If yours truly had remembered all that I read on a regular basis and tell myself about pacing, perhaps today (Saturday) wouldn’t have been a “crash & burn” day.  It has been a major crash at that, meaning PJs and sofa all day.  But it is not every week that hubby goes away on a school trip to France and my birthday falls slap bang in the middle of said week.  Now of course hubby going away means that my new carers for the week are the kids, so pacing in the house goes out of the window immediately.  But add into the equation several lovely groups of friends wanting to take me out to celebrate and the kids actually arranging a meal out too, then there is the recipe for an epic failure at pacing.  It has been great though!

Surrendering

Recently I have recognised that “surrendering” to my diagnoses and accepting my limitations need not be a negative.  Too often we think of ill health in terms of “cure”, and with ever changing medical advances there can be an unrealistic expectation of the medical profession to be able to put everything right.  But the reality of many chronic conditions is that there is not a cure and the best that can be done is to manage symptoms and keep as healthy as possible.  I know that some people didn’t understand why I started to use a wheelchair when I can still walk, and they will view my surrendering as something very different.

Surrendering & liberating

June Link Up with A Chronic Voice

But for me surrendering to my conditions and accepting them has been liberating.  No, I’m not “giving in” and am definitely not negative, but rather acknowledging that to live my life in the best way possible way sometimes I need a bit of extra help.  If using a wheelchair means that I can still go round the shops, or on a family walk then so be it!  If I need to rest and binge watch on Netflix, I won’t feel guilty (that is a work in progress!).

Improving

Much to the disgust of my kids, I think that my computer and social media skills are really improving.  If you listened to them you would be forgiven for thinking that I am the mother who constantly posts pictures of my little darlings every move.  Get over your selves, kids – I have other things in life to tweet, post to Facebook and Instagram!!  I have finally swapped to a .com blog account with wordpress, I am now able to link up all the relevant SM sites on my book reviews, I have set up several Facebook pages and I am an admin to a group.  Of course when I asked the then student engineer to set me up a blog when I had my spinal cord stimulator, it was just laughable in the kids’ minds that anyone would want to read anything their dopey mum had to say.  But my followers have grown slowly and steadily from all walks of life, and this old girl is pleased to report ongoing, improving IT skills!

Flowing

I’m going in a completely different direction with this prompt and want to share some fun that we had a few weeks ago.  For the past couple of years I have made the birthday cakes for the daughters of a friend, varying from My Little Pony to Cat Woman to a magic unicorn tiered cake.  This year the brief was sent by the soon to be 8 year old in the form a photograph with attaching note – NO fondant or buttercream icing!  “OK, leave it with me” I said to mum, wondering on earth I would achieve anything vaguely resembling the finish on the picture.  Then I learnt about “Mirror glaze” cakes!!!

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The picture I was sent!

So, with cake made and Youtube videos watched and admired, the lovely girl, hubby and I set to work creating.  The covering is made using a combination of gelatine, white chocolate, condensed milk and a few other goodies.  Then the colourings are added before pouring the icing over the cake until it is flowing down the sides and completely covers the cake.  Depending upon when the colouring is added and how many are added to one layer will alter the final cake covering.  It was great fun, the kitchen saw more flowing condensed milk than it has ever seen but for a first time I was pretty happy with our Mirror glaze galaxy cake!

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Our cake!

 

Hope you have enjoyed my prompts!

Claire x

 

 

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

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

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

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

 

 

 

 

 

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

Find Jenni here:

Youtube

Instagram

Twitter

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

Facebook

Thank you for watching!

 

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!

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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