Happy 70th! Treasuring our National Health Service #NHS70Birthday

If you are British, you can’t fail to have noticed that our National Health Service celebrates 70 years since its inception today.  Aneurin Bevan, Health secretary in the Attlee government, was the champion for a healthcare service that brought together all providers under one umbrella in order to provide care for all from “the cradle to grave” and  “free at the point of delivery”.

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This is not a political piece – there will be plenty out there to read – neither do I want to focus on the woes of our health service today or the shortages of money and staff.  I have spent many years working in the service and am now find myself very much at the receiving end of it and I could write a book about the ups and downs.  But today is for celebration of all that is good about our NHS and as a nurse in my former life, I could not let it pass unnoticed.  These are just a few of my observations from personal experiences….

I spent my formative years growing up in London teaching hospitals with a group of like minded girls (and the odd chap!) who became family.  We worked hard, we played hard, we were teens and able to cope with a night out followed by an early shift.  The structures within the NHS then taught us self discipline, punctuality, reliability, pride, teamwork and respect (amongst other things!).  We had experiences and encounters with patients and colleagues that would shape our young minds and remain with us for life.

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Photo by Pixabay on Pexels.com

I remember my first death, my first birth, my first still birth – all before I turned 20.  I had never seen a dead body before (how many 18 year olds have?), but when an elderly patient whom I had cared for on my first ward died, she still needed to be cared for.  In more recent times whilst working as a hospice nurse, I have often looked back and thanked a third year student nurse Kevin for teaching me not only how to lay a person out, but the importance to retain empathy and kindness whilst doing so.  When I recall my first birth, I really don’t mean the birth of my first….although I do remember that, Young Engineer!! I was stood at the shoulder and then holding a leg during this labour and birth, and I can still recall the wonder when that little pink, slightly slimy being slid into the world.  Actually he wasn’t so tiny at nearly 9lbs and was named Matthew, and I was privileged to be one of the first to have a cuddle.  It has never left me.

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Photo by rawpixel.com on Pexels.com

The still birth came only weeks after the birth of baby Matthew.  A couple had been admitted with a labour that had commenced at 29 weeks – third baby for mum, but first for dad.  The midwife knew quickly that something was wrong and broke the heart breaking news that there was no heart beat.  I was assigned as an inexperienced 19 year old to stay with this couple whilst labour progressed during my late shift.  It is impossible to put into words all that I learnt that day.  The bond that a carer can establish with a patient and relative under such intense physical, emotional and stressful circumstances was never clearer than that night.  My shift ended at 10pm but I had to stay until that baby was born.  Another baby boy entered the world at 2am the following morning, perfect, tiny and asleep.  He was beautiful and that is the first time I have felt my heart break.  His parents bathed him and dressed him for the first and last time.  They held him, whispered to him, loved him – and whilst I felt that I was intruding on such a deeply personal experience, they were adamant I should stay.  I carried that little boy away and cried my eyes out.

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Photo by Andreas Wohlfahrt on Pexels.com

I have written about our experience as young nurses in a hospital in the 80s with an HIV and Aids unit here – a really challenging time for the NHS but rewarding, life affirming and so challenging for this bunch of young nurses.  As a slightly more mature group some 30 years on we revisited our old stomping ground recently (read about it here) and it brought back so many memories – both from time as a student, and then as a young staff nurse in other London hospitals.  During my time in palliative care I met some amazing patients, had the good fortune to have wonderful colleagues and learnt to appreciate life.   I still miss being a nurse, I still feel like a nurse and I am still proud to have been a nurse in our NHS.

In recent years I have been in need of the NHS for friends, family and myself.  From a dear friend dying from cancer, to the deaths of all my grandparents, to the middle child slamming a door on his sister’s hand that then required reconstructive surgery – the NHS has been there.  A&E visits for broken bones, kidney stones and dislocations.  The time when the lovely girl was taken seriously ill – “Mum, should she look like a zombie?” – and rushed in with a highly contagious gastroenteritis aged 6(Rota virus), and when dad showed all the symptoms of a brain tumour days before a holiday in Canada.

My experiences haven’t all been positive – particularly some of my own surgeries over the years – and I am now classed as chronically ill and at the mercy of our health service.  I been on the receiving end of some dire care and have also had some fantastic care too (Medical professional to Professional Patient). But I do appreciate how far the NHS has come over the years, the technological & pharmaceutical advances that have been made, and the public interest in health.  I have been inspired by some wonderful people over the years – Dr Joe Ford,  a pioneer of breast cancer treatment in the 70s and wonderful teacher & colleague in palliative care: the staff nurse who cared for my great grandmother – she suggested to me, aged 17, that I had the makings of a good nurse; Julia Fabricius our nurse tutor; Paul Reeves, Charge Nurse at the Middlesex hospital who believed in me after my first back surgery and his friend Karen Aubrey who became my first ward Sister at Charing Cross Hospital and a great mentor;  Geoff, my physiotherapist who worked with me as we both learnt about my condition; my pal Caroline who became a staff nurse on the first teen cancer ward in London – we laughed when she left our flat in her stripy leggings and purple Dr Martens boots as they didn’t wear uniform; and wonderful Cathryn, also in my set, who having fought for her registration now helps other nurses who face unfair dismissal or have been made scape goats.  This list could honestly go on and on…..but must include everyone in my set, March ’88!

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The National Health Service is a sum of all its parts – at times it is brilliant, other times it fails; there are the cutting edge treatments and the failing, understaffed departments.  But today it turned 70 and there are some fantastic people who still strive to deliver health care for all, from cradle to grave, free to all; people who over the years have made it the institution, for better or for worse, that it is today – Happy Birthday!

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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!

Here we are in the UK celebrating another bank holiday Monday, and in the south east the weather is glorious..AGAIN!  I can’t recall a time when both May bank holidays have been sunny – 2018 will be one to remember.

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Photo by Lukas on Pexels.com

This week in the PainPals house exams have taken centre stage with the student engineer taking his final “Finals” exam – hooray – and the lovely girl sitting the bulk of her GCSEs.  There is just a group presentation to be given on Wednesday and then he has finished…4 years really have flown by!  Fingers crossed now that he gets the results he wants (and deserves).  The lovely girl is still revising, but feeling a lot less stressed and is creating a pile of books and notes ready for her bonfire at the end of exams!  Prime place is given to Mansfield Park which she hates with a vengeance.  Have I ever mentioned that Jane Austen is one of my favourites?  She keeps speaking to us in German though…this will continue as she plans to take German A level, but we haven’t got a clue what she is saying.  I am enjoying our latest German TV show though that we found on Amazon “You are Wanted” – she listens to the German whilst I read the subtitles.

Mum and the student engineer’s boyfriend (must find him a name, that is too long!!) celebrated their birthdays this week, on the same day, so we all enjoyed a night out at the local tapas restaurant.  I would love to share a picture with you, but the couple that I managed to take are truly awful and as my mother reads this, I really cannot publish them as she would never speak to me again!  The student engineer has planned a night out tonight (most unlike him) – and I can’t say any more in case his other half reads this before they get there. Stop typing, Claire..it is a surprise!!!!

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So what have I found for you in the blogging world this week?  It cannot have escaped anyone’s notice that four letters have been huge this week – GDPR – and I have included one post that is really useful.  But there is also a little something to tickle your tastebuds for wine day, a lovely piece from Happiness and Food titled “Asphalt and a Leaf” and flamenco..yes, flamenco dancing complete with a video!  I love the last post that talks about the giving and receiving of traditional letters and cards, delivered by the postman.  I take part in a designer’s card swap within the We All Send Cards site (where my girl has designs for sale) – it is so lovely to open a card with a message just for me!

So sit down, maybe with a glass of something cold and refreshing on this lovely day, and enjoy some great blogger’s posts.

https://www.unfoldandbegin.com/how-a-beautiful-traveler-found-herself-at-school/

https://thatblogwherecheriemovestogermany.wordpress.com/2018/05/21/hallo-burbach/

https://johnrieber.com/2018/05/25/its-national-wine-day-2018-toast-to-natures-magical-elixir/

https://www.london-unattached.com/uk-blogging-gdpr/

https://www.fromnicole.co.uk/blog/2018/5/26/stop-blaming-me-for-walking-away

https://croneconfidence.com/2018/05/24/the-best-contribution-you-could-ever-make/

https://www.happinessandfood.com/asphalt-and-a-leaf/

https://www.mostlyblogging.com/sites-like-stumbleupon-mix/

https://www.mecfsselfhelpguru.com/2018/05/me-cfs-flamenco-dancing-and-adaptation.html

https://www.graphic-organic.com/single-post/2017/12/18/Why-Traditional-Mail-Is-So-Important-In-The-Chronic-Illness-Community

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A card through the post made my day!

Please comment, like and share – make someone’s day!

Have a great week,

Claire x

 

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

 

 

Monday Magic – Inspiring Blogs for You!

I can’t believe that  another week has gone by and it is time for Monday magic again!  Have you finished your Easter chocolates yet?  There hasn’t been much eating for me this past week with 3 days of clear fluids and yet more bowel prep for a hospital investigation….third time lucky, hurray and thank god!!!  I had already decided that if my body hadn’t played ball this time, my mind was going to tell the doctors where the scope could be shoved…..Anyway this is a story for another spoonie post!!

Monday Magic Inspiring Blogs for You! (1)

I wrote a poem about my brain fog last week and it has played a long visit alongside its brother fatigue this weekend.  My balance has been seriously off kilter and as I went over backwards in the bathroom this morning, the lovely girl couldn’t stop laughing “You look like you’re doing the limbo Mum!”. She did catch me though, ha, ha, ha.  I have been reading a couple of your blogs about journals and bullet points – and decided I must start actually doing this.  Whilst I am up to date with my reading, writing my book reviews has been a bit more of a challenge and my dodgy mind has got the dates completely muddled.  Apologies authors – there will be reviews for everything I have promised.

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I’m not the only one in need of a journal plan….the lovely girl has devised a lovely revision plan but now she has to get down to actually doing the work, so far so good!  I don’t think the same can be said for her big brothers!!  Have I mentioned before that she is allowed to use a laptop to help with the hand and wrist pain from her Ehlers Danlos Syndrome? Hubby and I took a massive step last week when we allowed her to go a concert to see Declan Mckenna in North London with friends – and they made their own way home.  Conditions were put in place….”text when you leave” “call when you get to the overhead train” “let us know when you’re back”….if anything goes wrong, if the concert over runs, etc etc both your brothers are in London…..We sat here with hubby watching Twitter for the times of the support act finishing, when would young Declan go on stage…and we knew that the venue has an 11pm curfew.

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Image by Emma Swann on DIY Mag

Of course the girls were fine – she couldn’t text when they got out as they had to rush to get across London for the last train.  But as parents our hearts were in our mouths whilst we had to let go of our baby…..guess what the most surprising thing was?  Both her big brothers called home to check if we had heard from her….the student engineer at half past midnight!  They do care really….

But back to some blogs for you to check out this week….I couldn’t resist sharing one about Hotter shoes teaming up with Marie Curie cancer care & daffodils (as a MC nurse in a previous life!), and I have sent out for supplies for the no bake energy balls recipes.  For some really inspiring stories please read Debs World (her beautiful writing made me cry) and also the book review by Jazmin – Chessy Prout is a remarkable young lady who spoke out about her rape by a fellow pupil at school, the response of others about her and her strength of character.  I have also added a couple of extra posts today as I sit watching the Commonwealth Games.  These young ladies are both swimmers and have both won gold medals at these games, overcoming  huge personal obstacles on the way.  I have written about Siobhan Marie O’Connor here in the past and Sophie Pascoe is a great ambassador for parasports.

In case you mixed it – voting is now open for the Bloggers Bash Awards  so don’t forget to vote for your favourites.

Grab a cuppa, sit back and enjoy!

https://www.vanityandmestyle.com/2018/04/hotter-shoes-supporting-marie-curie.html

http://allthatjazmin.com/reviews/chessy-prout-book-review/

https://debs-world.com/2018/04/08/what-ive-learnt-from-surviving-a-school-trip-that-went-terribly-wrong/

https://easymommylife.com/no-bake-energy-balls-recipes/

https://mummyhereandthere.co.uk/2018/03/30/why-you-should-try-counselling/

https://www.graphic-organic.com/single-post/2017/10/10/World-Mental-Health-Day

https://helensjourneysite.wordpress.com/2018/04/07/time-rest-breath/

https://livingwithme.blog/2018/04/02/studying-in-the-spring/

https://mymedmusings.com/2018/04/08/im-good-my-body-not-so-much/

https://shannondianax.wordpress.com/2018/04/06/mental-health-and-hospitals-and-lifesaving-heart-surgery-and-british-heart-foundation-all-in-one-week-3/

http://www.thesportfeed.com/siobhan-marie-oconnor-swimming-with-ulcerative-colitis-nicola-kenton/

https://offthetracks.co.nz/sophie-pascoe-stroke-of-fate/

Please share these posts and show these great bloggers some love!

Have a great week,

Claire x

 

Daily Prompt #Explore – My Brain Fog

How can I explain to you my brain fog, dear friend?

Come with me and explore the opiate shaped holes in my mind

Move inside my skull, around my head and explore

The maze of cotton wool corridors.

Think of what you have just left behind you,

Explore around the next corner,

And then turn back.

But the fog has enveloped that last thought

And we are lost,

To explore no more.

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Drawing by Lucy, Zebra Girl (wasc.uk/zebragirl)

 

Daily Prompt : #Explore 

 

 

 

 

 

 

 

 

 

 

 

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So Which Ology is it Today? The Chronic Life!

 

The winter Paralympics starts this weekend and once again my jaw will be undoubtedly hitting the floor as these athletes put themselves through feats that no human body should be exposed to.  Do they not know that this poor old body has not yet recovered from the near misses of the “Big Air”, the flips and trips of the ski slopes and the drama of the UK ladies’ final Curling match at the Olympics?  There is only so much stress one old girl can cope with!!

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Which Ology

This has been another of those medical fortnights, doing the rounds of the hospitals and doctors.  I called on my very own “Dad cab” the other day and as we arrived at the hospital even he said “So which Ology are we seeing today?” to which the receptionist grinned and replied “If you’re seeing an Ology you’ll be OK”……it will only be the Brits amongst you of a certain age who will get this.  So just to make sure no one misses out here is the wonderful Beattie aka Maureen Lipman:

 

So where were we?  Visiting rheumatology on this occasion and the very nice consultant(wrote about him here!) who is still of the opinion that I’m managing my condition very well, but he will defer comments about care of the ever dislocating shoulder to the orthopaedic consultant – who I visit next week.  But he doesn’t have an Ology, so it might not go well!!

Then there was the visit to Gastroenter”ology” and a young man who introduced himself as Chris and told me his dad trained at the same hospital as me at about the same time. How to make a middle aged bird feel even better about herself – and I haven’t even hit the half century milestone yet!  Well Chris, actually a registrar, explained the results of the last camera which looked down my gut, and would now like to do another one from the opposite direction – oh joy!!  I have to admit to being pretty impressed though when he actually rang me yesterday to confirm that the latest armful of blood I gave shows that my anaemia is worsening….and then I had a call asking me to go in for said delightful procedure on Tuesday.  So yours truly is currently sitting waiting expectantly for a fed ex delivery – no not of flowers and chocs from my children….but for bowel prep from the hospital!!  I know that in the 24 hours before I will only be allowed clear fluids and I have it on good authority that white wine is allowed – when the said authority called his hospital to ask if he could imbibe, he was told it was the first time they had been asked that!

It comes to something when you find yourself discussing which hospital coffee shop serves the best coffee, as Dad and I were on our way home – or when the highlight of the week is a trip out to hospital.  I believe it is called the chronic life!  So now back to the Paralympics to be amazed by superhumans doing extraordinary things and I will continue to daydream of flying through the air on a snow board…..

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Monday Magic – Inspiring Blogs for You

It has been a freezing week here in the UK, with widespread snow and some areas completely cut off.  Now the big thaw starts….we hope!  I can’t claim to have been cut off, but the cold is not the friend of my back and the titanium inside me feels as cold as the snow outside.  My spinal cord stimulator has been doing battle with the chronic nerve pain in my leg and back, as is seemed to ricochet off the charts….forget pain scored out of 10, how about multiply that by 10.  Even turning the stimulator up – increasing the intensity and speed of the “current” that I feel – couldn’t dampen it.

Monday Magic Inspiring Blogs for You!

But the good news is that whilst I have been keeping warm inside I have been doing a fair bit of blog browsing and even got round to finally registering on UK blogs!  I guess the next thing to do is sort out going self hosted – the student engineer is supposed to be doing this and hosting me, after all IT and software is his thing – and he has been web hosting since he was about 14.  But I am just his mother….and placed way down the list of priorities!!!  There are no plans in the pipeline to attempt to make my fortune blogging, but it would be nice to be able to be available for some more review opportunities…..so come on, son, get it sorted.  He is currently sitting here programming and flying a drone in my lounge……aghhh mind the dog! (My video won’t work so a pic will give you the idea)IMG_20180305_165617264_HDR

 

The other son has been in contact this week, but not because he wanted to make conversation with his parents…..we usually just get messages passed on from Snapchats received by the lovely girl.  He wants his suit, his shoes, tie and tie pin sent to him….by this Thursday please for a formal dinner.  Hmmm….I wonder if there will be a little something for Mother’s Day sent by return courier?  I won’t hold my breath.

Our other family member to be happy to see the thaw is our shaggy old dog, Samson.  He will hide rather than have to go outside and I am sure that the cold makes his arthritis worse.  But do you think he will take his pills? We have tried burying in his food, wrapping in melted cheese, fig rolls, even inside pasta….but he is wise to it all now and will eat his food leaving 3 pills in the bottom of the bowl, with not a tooth mark on them!!  Suggestions people – he is on doggy cocodamol and Pardale V – and his cocodamol costs a damn site more than mine!!download (2)

So now some blogs for you – I have found everything from heat hacks (perfect just now), to skills we mustn’t lose (please, please let me know how you score…and if you have tapped a tree!), to making fashion accessible.  Sustainability is very current and we can probably all pick up some tips to change our habits, and if you are planning a UK or European city break don’t miss The Style Thread.  The final post in an invitation to a special virtual coffee morning on International Women’s Day – join with bloggers globally to celebrate.

Grab a cuppa, sit back and enjoy some “me” time!

https://teaandmaz.com/2018/03/03/anxiety-makes-want-hate-convinces-believe-everyone/

http://ohlovelyblossom.com/personal-battle-anxiety-tips-overcoming-panic-overwhelm-stress/

https://eco-gites.blogspot.co.uk/2018/03/skills-we-must-not-lose.html

http://www.someplacestrange.net/2018/03/sustainable-me.html

https://bettysib1998.wixsite.com/young-sick-invisible/single-post/2018/03/02/Heat-Hacks-1

http://www.pigletish.com/blog/mentalillness

http://retrainbrainandsimply-shine.co.uk/how-being-really-vulnerable-resulted-in-my-diagnosis

https://myblurredworld.com/2018/02/18/making-fashion-accessible-blind-vi-person/

http://www.thestylethread.co.uk/2018/02/city-breaks.html

https://smorgasbordinvitation.wordpress.com/2018/03/01/international-womens-day-march-8th-2018-pressforprogress-coffee-morning-next-wednesday/

Please comment, like and share these posts if you enjoy them!

Have a great week,

Claire x

 

 

It is #RareDiseaseDay – this is a great post written by Sarah on My Stripy Life

Today is Rare Disease and I have a wonderful piece for you to read about my own rare disease….I wish I had written it but another UK Zebra friend & mum, Sarah, is the author! Enjoy!

1 in 12 million

 

I’m not going to dwell on the detailed science involved with EDS and CMT, the genetics behind the conditions so to speak.  I may get into that all in a bit more detail at a later date.  I will try to explain what it means to live with them each day.  Why I might look fine one day and not the next.

CMT is genetic, it has been passed to me from my mum.  We were unaware it was in our family until I was diagnosed after complications having my first baby.  It is thought that around 23,000 people in the UK are affected.  I have a 50% chance of passing it on to my children.  I have three children now, our youngest had a positive diagnosis just before her second birthday, one of the boys has a negative result and one hasn’t been tested.

CMT affects the nerves in your peripheries, your arms and legs.  Our body’s system of nerves is similar to a network of electrical wires………continued

My EDS diagnosis came later, 10 years later.

At first we thought that CMT explained everything in our families weird and vast medical history but as time went on gaps showed.  Rubie blessed our lives with her beautiful smile and the skills of a contortionist and we started to want answers to all of our unanswered questions.  It was recommended that I see the amazing professor Rodney Grahame before my foot surgeon would consider surgery, at this point I had been reading his books to gain answers to Rubie’s gross hypermobility.  After an hour and a half’s consultation I now had a shiny new badge to wear.  The missing pieces of our puzzle now slotted into place.

EDS is the term given to a whole collection of inherited conditions that fit into a larger group known as hereditary disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones, it is the glue that holds the body together.  There are several different, distinct types of EDS, but they have some features in common, loose joints, stretchy skin and tissue fragility. I have Hypermobility Ehlers-Danlos Syndrome. The exact cause of HEDS is unknown. The features suggest that there is a problem with connective tissues and possibly collagen. The condition appears to be inherited which suggests that there is a genetic cause. It is likely that there is an alteration in a gene, or several genes, containing the instructions for making connective tissue. This results in the connective tissue being less effective.

It leaves me with joint hypermobility, my joints having a wider range of movement than usual, they are loose and unstable, can dislocate and subluxate.  I sublux my joints daily, this week cutting a slice of cheese I popped out my wrist and couldn’t lay on my back in bed or one of my shoulder blades would sublux.  In my 20’s I would dislocate my knees on a daily basis with minimal trauma, walking into Regal’s on a Saturday night or turning over in bed.  I had major knee surgery to realign things and tighten ligaments so it happens less now than before but is gradually becoming more of an issue again.  As my joints are less stable they are prone to sprains and strains……” continued

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This is just a small part of Sarah’s post and I would really like you to visit her as this is my story too…well at least the EDS parts including the daily dislocations, dysautonomia, pain, gut problems and in our family neck issues with recurrent migraines.  All 3 of my kids have symptoms too, with the boys both experiencing dislocations of the knees in early teens, one has bizarre stretch marks on his back whilst the other has mild pectus excavatum (deformity of sternum), and one has severe migraines & I suspect a Chiari malformation.  The lovely girl has chronic pain (which she deems not too bad although it is daily), dislocations and difficulty holding a pen.  All three have poor proprioception (are clumsy), have snow vision on standing (dysautonomia) and anxiety…..

Find Sarah’ complete post here : One in 12 Million 

Be sure to watch her wonderful kids’ film here: https://youtu.be/rTtcT5qaiZw

Monday Magic – Inspiring Blogs for You!

It is the beginning of the week so that must mean time for some inspiring blog posts in a little Monday magic!  The last week has encompassed Valentine’s Day, the second half of half term and a trip to Berlin in our household.

I did manage to get to the RSC Twelfth Night at our local cinema, and whilst I couldn’t stand by the end, it really is a superb production. Adrian Edmondson – yes of Young Ones fame – steals the show for me with an outstanding performance of Malvolio.

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Adrian Edmondson as Malvolio (source: Google Images)

When coerced by his colleagues into ridiculous costume, Malvolio gallivanted across the stage serenading the audience, making me think of a cross between a jester and an English Morris man!  So how did the rest of the family mark Valentine’s Day? We arrived home to pizza boxes and various teenage girls wrapped up in blankets in the lounge, and the student engineer did make a trip to London for an evening for two – I don’t believe he has a romantic bone in his body though!  As for the politics student, contact has been remarkably quiet this week….but he is probably even worse than his brother, so I would be very surprised if his girlfriend was given a card, let alone flowers!!

The eldest jetted off to Berlin for a weekend away with friends…..the friends were staying Photo from Clairein a posh(ish) hotel and our engineer was staying in a hostel next door.  Never one to waste money, his thought process went something like this “I’m not spending all that on a hotel, but if I stay next door I can sneak in with my mates and still use the facilities!”  We only knew he had arrived when his sister had a photo pop up on Snapchat…..I asked him to send some pics, thinking he  or his friends might feature in them, but this is what he sent! He is currently sending us angry emoji faces as he has been sitting on the tarmac for 2 hours in a plane that has a “problem”!  I believe they are now airborne, so hubby has been summoned to Heathrow……

 

I have selected a wide assortment of posts again this week – but I believe that there is something here for everyone.  The Big Money Saver post, whilst not specifically a chronic piece, is great for my spoonie friends out there and the post on PixieDusk “We Need To Talk about Cancer” is truly inspirational and I urge you all to read it.  When I found the wonderfully named Pass The Prosecco Please blog I was determined to find something there to share, purely because I love the name!!  The Mens’ Health Summit is really important – all you blokes out there should have a look, and if the men won’t, ladies please do! The posts are all fab, so sit back with a cuppa – or a Prosecco! – and steal some time to read relax and enjoy.

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Monday Magic - Inspiring Blogs for You! (1)

http://www.thebigmoneysaver.com/6-fun-ways-to-save-money-when-hanging-with-friends/

https://pixiedusk.livejournal.com/468544.html

https://nothingbutpoetry.wordpress.com/2018/02/15/always-a-first-time/

https://askdrho.com/mens-wellness-summit/

http://christiehawkes.com/put-psychology-of-color-use/

http://www.balancedespitethechaos.com/blog/marvelous-massage

http://www.comfortbites.co.uk/2017/05/using-diet-and-lifestyle-to-ease.html

http://passtheproseccoplease.co.uk/im-not-good-at-resting-or-listening/

https://hypothyroidmom.com/im-fine-thanks/

http://healthy-life-box.com/no-wheat-no-sugar-no-dairy-delicious-avocado-coconut-sweet-potato-brownies/

Do you have a favourite?  Have you enjoyed these? If yes, please like, share and comment for your fellow bloggers.

Have a great week,

Claire x