Book Review : “Perception and Illusion” by Catherine Kullman

I was given an ARC of this book by TBC on Facebook and by kind permission of the author in exchange for a fair and honest review.  All thoughts are my own.

Regency novel pin

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All good Regency novels must have a heroine, a hero and a couple of protagonists to really work well.  In Perception and Illusion, we are immediately introduced to the heroine of the piece Lallie Grey…………in 1814 a young woman living with her father’s second family, to all intents and purposes playing the role of governess to her young half siblings and at twenty-four having never experienced her own season or the chance to find a husband in society.  Her own mother died when she was an infant and she lived with her maternal grandparents until their deaths.  Unaware that she is in fact an heiress, Lallie refuses to marry the man who her father schemes for her to wed, in order that he might keep control of her fortune.  But Lallie escapes with her maid and runs into a gentleman whom she has met once before, Mr Hugo Tamarisk. Heir to huge wealth himself, he initially becomes her ally and protector, but I give nothing away by telling you that the hero and heroine fall in love and so the romance, confusion and intrigue begins.

Both Lallie and Hugo are dogged by their family past – Lallie by circumstances that she is not privy to, and Hugo by relationships with his sisters, father and an ex-mistress.  The fairy tale ending comes part way through this book, with the socially naïve Lallie finding herself thrown into a whirlwind of high society and her fairy tale disintegrating as other people invade her space and mind.  Not all the characters are intentionally trying to cause trouble or pain to Lallie and Hugo, but a mixture of miscommunication, half heard conversations and meddling lead to a difficult start to married life.  I am not giving you any spoilers with more plot!


Picture from Ms Kullman’s website

The words Regency novel jumped off the page and I couldn’t have requested it quicker.  I am a huge Jane Austen fan and had to remind myself that I must not make comparisons, but it is difficult not to initially.  The funny thing is my teen is studying Mansfield Park and whilst I was reading Perception and Illusion, she was reading out loud sections of Miss Austen to me in order to stay awake.  She hates it with a vengeance!  I must admit that I had forgotten just how dry some of Austen’s writing can be, but fear not as Ms Kullman writes this period drama with a modern style.  It is easy to read romantic Regency fiction, but not without some grit and very determined characters.  There are also some cheeky references to a couple of Austen’s characters too.

An area where this novel does share similarities with Austen is the role of the female lead.  She is strong, self-aware and knows her own mind – in many ways Lallie is a very modern, feminist woman living in a man’s world dictated to by male rules.  She reminds me of Lizzie Bennett and Emma Woodhouse, both women struggling to have their voices heard in a time when fathers, husbands and brothers had the final word.  The poor communication between the main characters drove me mad at times, and I wanted to shout at them to just talk to each other.  But the circumstances were of the time, and the fact that I was so irritated must show how well Ms Kullman wove this into the overall plot.

I could quite easily write a full period type analysis…but I won’t!!  The characters all grow with the storyline, whether to become admired or diminished by the reader.  The descriptions of the locations, the fashions and the coach rides were painted as vivid and elegant pictures, depicting the era perfectly.  But the most important thing for me is that the novel was really enjoyable and I read it in a matter of days.  A lovely, witty romantic period piece – 4 stars.

Publisher: CreateSpace Independent Publishing Platform (30 Mar. 2017)

Available at Amazon here:

Perception & Illusion

The Author

Catherine Kullman can be found at

Catherine Kullman

From her website:

I was born and educated in Dublin. Following a three-year courtship conducted mostly by letter, I moved to Germany where I lived for twenty-five years before returning to Ireland. I have worked in the Irish and New Zealand public services and in the private sector.

I have a keen sense of history and of connection with the past which so often determines the present. I am fascinated by people. I love a good story, especially when characters come to life in a book.

I have always enjoyed writing, I love the fall of words, the shaping of an expressive phrase, the satisfaction when a sentence conveys my meaning exactly. I enjoy plotting and revel in the challenge of evoking a historic era for characters who behave authentically in their period while making their actions and decisions plausible and sympathetic to a modern reader. In addition, I am fanatical about language, especially using the right language as it would have been used during the period about which I am writing. But rewarding as all this craft is, there is nothing to match the moment when a book takes flight, when your characters suddenly determine the route of their journey.”


Monday Magic – Inspiring Blogs for You!

Normally I would start a Monday Magic whilst sitting with a cup of coffee on a Monday morning.  But since I was last here, I have been found lurking in hospital corridors again….when a nurse pal texted me last week saying she hoped the picolax (medicine used for bowel clearance!) wasn’t too awful, my response was it wasn’t awful enough as I had to go back for a repeat run.  So the weekend has seen me on clear fluids and then foul fluids (a different, stronger bowel prep), and another admission this morning.  Several nurses looked at me and said that I looked familiar….well let us just say that i will be even more familiar as we go for the third time lucky.  Aghhh….I keep telling them that my gut is also affected by dodgy connective tissue, making it resemble baggy tights!


Enough of that…..there have been some really lovely, inspirational moments this week too that have not involved hospitals or drugs.  A Performing Arts Evening hosted by my Alumni committee, where some very talented people from across the generations and the disciplines spoke and performed with such passion and dedication.  Actress Molly Hanson left us in no doubt just how hard it is to break into the world of acting, the hard graft required at drama school and then the months spent doing any job to pay the bills.  But the elation of winning an acting nomination recently made it all worthwhile.  Amongst this week’s blogs is one that Molly writes with student Isobel Thom (see previous post about Izzy here).


Beautiful young actresses Molly and Izzy

Young singer/songwriter Josh Selimi is currently studying accounting whilst looking for an agent and promotion, whilst at a very youthful 90, Bob Barter stole the show when he took to the keyboards and entranced us with his jazz.

The following night we were treated to a performance of The Adams Family by our daughter’s and eldest son’s schools.  Staged in a local theatre, these young people sang, danced and acted their hearts out – whilst many are studying for GCSEs and A levels.


The middle child celebrated his first birthday away from home and was in full student mode outside a pub by midday.  He actually hung up on his mother when I phoned him and sang Happy Birthday….so hubby phoned straight back and sang the next line, with the eldest finishing off our little ditty!  Talking of birthdays, yours truly spent the weekend up to elbows in icing and glitter creating a pinata unicorn cake for a special 6 year old.




Without further ado, please spend a little time having a look at these great blog posts – enjoy some tips for coping with “one of those days” and breaking down tasks into bay steps, and learning that laughter really is the best medicine.  Enjoy!—a-review

Please share the posts you enjoy and drop a comment or a like for these bloggers.

Have a great week,

Claire x



Monday magic – Inspiring Blogs for You!

It it the beginning of a new week and time to find some more fantastic blog posts for you.  Here at PainPals HQ, I am in full throes of prep for my little visit to hospital tomorrow – and am trying to get ahead with preparations for a 3 tier unicorn cake that a little girl has asked me to make for her party next weekend.  It is amazing just how definite a 6 year old can be about what they want!!  My unexpected day trip tomorrow has thrown a spanner in the works and I am really hoping that I won’t feel too rough on Wednesday for making some Unicorn sparkle.

Monday Magic Inspiring Blogs for You! 12 March

I am sure that you have had quite enough of the babble about family PainPals over the last couple of days, so I will launch straight into our blogs for the week and a post entitled “No Monday Morning Blues” seems a perfect place to start!  Yesterday I wrote about Mother’s Day, but I want to draw your attention to a heartfelt post about World Childless Week.  There are a couple of reviews here for you, something for March: MS Awareness month and not forgetting that this week celebrates St Patrick’s Day – Casey the College Celiac has delivered us some fab treats meaning that no one need miss out!

Grab a drink – mine is clear fluid today! – put your feet up and enjoy some great posts.


Image found on Casey The College Celiac site


Why not share your favourites and let the bloggers know that you enjoy their work? Please like, comment and share these fab posts.

Have a great week,

Claire x



Things I’ve learnt since being a mum #MothersDay #SundayBlogShare

How many UK mums woke up this morning to luke warm drinks and cold toast served up on a tray with a side of daffodils?  Happy Mother’s Day, Mummy!  No, my lot are beyond that – in fact only one of them is here and she had to be dragged out of her pit.  But we did have our 7 year old nephew staying and he was awake bright and early – Uncle Dunc’s job to play, watch Lego You tube videos and generally entertain.  So I was greeted with an enormous shout of “Happy Mother’s Day, but you’re my auntie” as I entered the kitchen.

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Being a Mum

I haven’t heard from either of the boys in person yet…they may just be emerging from their pits.  The student engineer went out with his boyfriend and his parents last night, and I did try to wangle an invite too but the thought of us turning up sent him a delicate shade of grey, tinged with an air of panic!  But….yesterday morning the doorbell went at some unearthly hour and a delivery arrived for me.  From the politics student…for Mother’s Day.  Wow!!! Very impressed with a lovely box of chocs – but what is with the note?!

Olly gift

All the talk of Mother’s Day on TV & radio this morning has got me thinking about some of the things I’ve learnt since being a mum….

  • Yes the love is unconditional and two way – until you find felt tip all over the walls, or the lovely 12 year old turns into a teen….hormones, smells, trainers, mouldy food, and you are “the worst mum in the world” – maybe a little doubt creeps in
  • There is no right way to do it – but there is your way (and believe me it will be different to everyone else’s!)
  • Parenting is bloody hard and no it doesn’t get easier….it just changes!  Some days you will long for the time that your offspring was portable and could be strapped in to a carrier, rather than this 6 foot something hulk looking down on you determined to do his own thing.
  • An appreciation for your own mum – I’m lucky as she is my biggest supporter, has my back and is my friend.  Hope I can say this about me and my girl too. 

  • Breastfeeding is not the most natural thing in the world for everyone.  Yes I did it people, but…..all 3 babes struggled to latch on (another design fault in my bodywork), I spent weeks walking round with cabbage leaves in my bra and got a fab dose of mastitis each time….twice with the lovely girl, was seen by every feeding counsellor under the sun and had a “let down” reflex that was so strong it even tuned in to passing lorries, leaving me with rivulets flowing down my shirt!!  And….I had enough milk to feed the entire post natal class,  I kid you not, even my midwife asked if I’d considered donating some (this was before the days of internet breast milk sales….can’t get my head round that).  Of course now I take full credit for their combined intelligence as being completely down to my super milk and my bloody mindedness (10 months for the boys, 6 for the girl)
  • Just because your gorgeous toddler eats everything, including his greens, doesn’t mean he will not turn into the fussy eater from hell!  And leaving him with the food in front of him or telling him you are not cooking anything else…well if he is strong willed and bloody minded (wonder where that comes from) he WILL go hungry! Even in his teens and twenties!
  • The playground can be even more competitive as a mum than as a child
  • You really can’t do it for them, no matter how hard you might try – be it walking, writing, revising, taking exams or joining the world of adults.
  • When this human you bore is hurt, physically or emotionally, it really can hurt you more than anything else – strange, but true!
  • They may only  call when they need something (money, a lift somewhere), but it is YOU that they call….
  • Kids are expensive – a whole post in its own right!
  • My reserves run so deep – be it patience, impatience, anger, frustration, love – and I can cope with so much more than I would ever have dreamt possible.  But I still feel like the same person I was at 22….

So I am raising a glass to all the Mums out there past, present and future….and to all of us kids, be we babes or grown ups, for being some Mum’s baby.

Scan 2

How time flies….about 11 years ago!




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…..



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… 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!

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

Have a great week,

Claire x



My Guest Post on “You are Awesome” Love Letter – Do You Remember?

Last week I was thrilled to be featured on Angela Noel’s blog “You are Awesome – Celebrating Inspiring People and Interesting Ideas” as her regular Love Letter guest post.

This is actually a poem that I wrote over 14 years ago for one of my closest friends, who had just died after a 2 year battle with breast cancer.  We found ourselves in a situation that I could never have envisaged as our close friendship became one of nurse and patient.  I was recognising signs and symptoms before they were diagnosed, and I encouraged her to accept a referral to my place of work for palliative care.  The day that I called my consultant to arrange for her to be admitted and then called her hubby to tell him, I went home and sobbed.

The next day I donned my blue dress and I went to work to care for my patients and my friend.  I was the nurse in charge and had to be professional, but after handing over to the night shift I couldn’t stop myself from begging the night girls to take good care of her.  She came home the next day, a Saturday, and died at home the early hours of Tuesday morning.  She was 37 and had the most beautiful smile in the world.

Please visit Angela’s post to read my full poem:

Love Letter : Do You Remember?

and have a look around the blog as Angela is one of the most inspirational and beautiful writers that I follow.  Thank you Angela for having me!



Post Comment Love


From the Lancashire Evening Post: Swimming star, her chronic illness and decision to retire from the sport #EhlersDanlosSyndrome #RareDiseaseDay

It is unusual for me to publish 2 posts on one day – but it is Rare Disease Day and this is another example of an amazing Zebra #EhlersDanlosSyndrome. The Lancashire Evening Post have kindly allowed me to share their article with you.  To view the accompanying video to the post please visit Lancashire Evening Post

Big Interview: Swimming star Stephanie Slater opens up on decision to retire from the sport

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Steph Slater pin.png

As Stephanie Slater succinctly puts it, ‘To look at me, you wouldn’t think there was anything wrong’.

Indeed with her almost permanent beaming smile together with her bubbly personality, the Longridge lass – who won a glorious gold medal at the Paralympic Games in Rio – does not look anything other than ‘a picture of health and happiness’.

Congratulations on being an inspiration to so many and accomplishing your Olympic Dream!! Happy Retirement @StephESlater !!

However, the swimming sensation last week made the shock announcement that her pool career was over at the tender age of just 27 due to ongoing health issues.

It is a little known fact that Slater almost did not make it to Rio after struggling with a severe neck injury the year before.

After a series of tests, she was eventually diagnosed with Ehlers-Danlos syndrome and Postural orthostatic tachycardia syndrome (POTS) – conditions which she has unknowingly struggled with for all of her life.

Passed off by a series of medical professionals as just growing pains when she was a child, it is remarkable to think that Slater reached a level where she was considered a potential competitor for the 2012 Olympics.

Stephanie Slater

Exceptional Zebra, EDS swimmer Stephanie Slater

Stephanie Slater

However, the conditions would eventually put paid to her able-bodied career in the lead up to the London Games and almost curtailed any hope she had of competing as a paralympian.

Through sheer guts and determination, Slater made it to Rio and all the pain was worth it when she returned with a gold in the medley relay and silver in the S8 100m individual butterfly.

“It was actually touch and go as to whether I was going to make it to the Paralympic trials in 2015 – I was out of the water struggling with a severe neck injury,” Slater said.

“But with rehabilitation and just basically pushing myself, I managed to get the qualifying time.

Stephanie Slater shows off her medals.

Stephanie Slater shows off her medals.

“With the amount of pain that I was in, I was eventually diagnosed with Ehlers-Danlos syndrome.

“The condition is to do with your connective tissues throughout the whole of your body and basically mine is faulty. It means my body is not held together like it should be.

“I was also diagnosed with POTS.

“It was that condition which kept me out of the pool and preventing me from training because it causes you to collapse unexpectedly.

Stephanie Slater moments after winning her silver medal in Rio

Stephanie Slater moments after winning her silver medal in Rio

“So being around a pool made me nervous because I did not know whether I was going to collapse or not.

“Both of my conditions are invisible.

“To look at me you wouldn’t think there was anything wrong with me.

“But there is and it badly affects me.

“Because it’s so rare, they had not been able to diagnose it when I younger.

“I have had all these problems growing up and it was just put down as growing pains or that I had been doing too much training.

“It was just brushed off, but actually I have been battling with it since I’ve been a baby.

“It’s kind of nice in a way to finally have a diagnosis.

“At the same time, because there is no cure, it’s one of those where it’s like, ‘It’s got a name, but it doesn’t change anything’.

“I have just got to get on with it

“It answers the question of how I got the injury to my arm when I was training for the London Olympics in Swansea.

“Back then, they didn’t know why, but now there is an answer.

“Hopefully by stopping swimming now, I will stop myself from suffering any more nerve damage or even worse paralysis.

“With my neck, it’s quite fragile, so I have to be really, really careful that I don’t cause further damage.

“People can’t believe what I have achieved with what I have been dealing with.

“I have never complained about it or spoken about my condition and how it has affected me.

“At the end of the day, I wanted to achieve my goals and I wasn’t going to let anything stop me.”

There are certainly pangs of regrets for Slater that she has been forced to give up the sport she loves doing the most prematurely.

“It was really, really hard and it took quite a few months to come to the decision,” said Slater

“I spoke to a lot of medical professionals and also to my support team at British swimming.

“I had to make the hard decision to retire for my own health and well being.

“I always felt that I had a lot more left in me to give so that is what has made it really hard to stop.

“I know that it is the best decision for me and I have just got to look at what I have achieved.

“My last competition was Rio and the Paralympics, so it’s nice to think that I finished on a high – winning a gold and a silver.”

Slater’s memories of her time in Rio will never leave her and she breaks out into an even wider grin – if that’s possible – when she thinks back to her time at the Paralympics.

“It was just a party atmosphere,” she said. “The atmosphere was incredible.

“I remember doing an interview with Clare Balding in the village where all the different venues were and the amount of people who were crowding around us was incredible.

“They all wanted to speak to us and have pictures. It was amazing.

“I had been to the Commonwealth Games in Glasgow two years earlier and I was expecting it to be like that.

“But the Paralympics were so much bigger.

“Just the size of the food hall was incredible – it was like the size of four Asdas.”

Slater’s achievement in winning gold in the relay was a double delight as the team also broke the world record.

“The relay was between us and the Australians,” she said.

“That was how it had been four years earlier in London, but on that occasion it was the Australians who had actually pipped GB.

“When I dived in, I had to catch the Australian girl up.

“I just thought, ‘I have got to get the gold – there’s going to be nothing stopping me’.

“I just put my head down and went – when we touched that wall and we saw that we had broken the world record as well, it was such an amazing feeling.

“It was so, so nice to stand on the top of the podium and see the GB flag rise.

“All of the GB supporters were there with their flags and I could see my mum and dad in the crowd.

“That was really, really special for me.”

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

Envy (1)


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:

Monday Magic – Inspiring Blogs for You!

We awoke to snow this morning and the Monday garden did look pretty magical!  But then the reality kicks in as we don’t do snow well here in the UK and by mid morning the rail companies were already announcing changes and cancellations to timetables tomorrow.  My girl and her friends are dying for the snow to continue so that they have a snow day tomorrow – it is bitterly cold, but I’m not sure if there will be enough snow for no school.

monday magic

My morning has been spent with another hospital visit: picking up results, being booked in for more investigations and all rounded off with the obligatory vampire visit for blood tests.  Apparently I’m anaemic (again) and my red blood cells are small…that is a new one on me.  It did make me smile when the young registrar asked how much red meat I eat….I could hear the student engineer’s response which sure enough he gave when I said it too him later “Never enough, MOTHER!! We NEED steak every day”.  In your dreams boy, unless you want to start paying more rent….

There has been a huge loss in our house this week leaving a massive void.  It is a death, but not of a person or a pet.  We have had to have our enormous ornamental cherry tree cut down as it was diseased and one half had already died.  But we tried to keep it for as long as possible – I don’t know how old it was, but we have been her 18 years – as it was such a major feature of the garden.  Now there is literally an empty void and a huge scar in the shape of diseased, raw stumps and an overwhelming that sadness that there won’t be the pink blossoms this year, or even the nightmare of the leaves in the autumn.  Funny how this loss can induce grief isn’t it?!  So I guess soon we will be looking for a new family member to inhabit the back garden…maybe another fruit tree, or something faster growing…..

My weekly inspiring blog posts may be coming a little to you than normal….in fact it is nearly wine o’clock here for those who enjoy a tipple, or perhaps that coffee is still on the menu.  So whatever your drink of choice, sit back and enjoy a few minutes with some inspiring blog posts and a vlog this week!  I will definitely be having a go at baking the GF choc chip cookies and eating them whilst reading some of your posts…..

Please like, share and comment…and have a good week!

Claire x



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