Ehlers Danlos Syndrome Awareness Month

In a break from the norm I’m posting an article that has nothing to do with books or writing. Don’t worry, I’m not changing the focus of my blog to my health. And I’m not in search of sympathy, either. But my health has seriously impacted my ability to write. I’ve been working hard this last year to gain control of my health and you’ll be pleased to know I’m making progress, and I very much hope this will positively impact my writing, as well as many other aspects of my life.

I’m posting this in support of Ehlers Danlos Awareness Month. Many people, including health professionals, have never heard of this condition, much less understand it and how it affects sufferers. For treatment and the understanding of this group of conditions to improve it’s essential that we discuss it more openly. This is my contibution, and thanks in advance for taking the time to read it.

My EDS Story

May is Ehlers Danlos Syndrome Awareness month. My friend Cassandra Campbell, who is also a fellow EDS-er, encouraged me to share my story to help highlight this condition and the impact it has on sufferers lives. I don’t have any qualms talking about my illness but I do struggle when it comes to expressing how it truly affects me in my day to day life and how it makes me feel about myself. I often downplay it or laugh it off, mainly because I feel embarrassed or misunderstood (“But you don’t look/sound disabled!”), or guilty because I’ve missed yet another friends birthday/dinner/night out, or my son has had to help me up off the floor again, or stay home to help with chores instead of going out with his friends.

So here goes. Here’s my story. Today I’m not going to downplay it, but I can’t promise not to laugh it off. Sometimes it’s the only way.

Throughout my teens I was always injuring myself. Sprained ankles, torn ligaments, broken bones, aches in my legs and arms. But I was very sporty and put it down to that. I thought everyone was the same at that age. A combination of growing pains and clumsiness. I was always active, always out. I went back to work after my son started school and enjoyed a full and busy life. I suffered from IBS but was dealing with it reasonably well for a time. But soon I was in constant pain and discomfort. Sitting and walking became very uncomfortable. I had pain from my back and abdomen down my leg. Then in 2009 I was diagnosed with Endometriosis. I had major surgery that year to remove cysts. But I still felt unwell. The following year I lost my mum and my job. The cysts came back. I had keyhole surgery, but I just wasn’t recovering. My whole body hurt, I was constantly fatigued. The cysts came back again so finally, at 35, I decided to have a hysterectomy in 2011. And still I couldn’t recover. My body felt like lead. I was lost, swallowed up by this black hole of pain, fatigue, fear and confusion about what was wrong with me. My GP was no help. He told me I was depressed and accused me of being addicted to painkillers. I probably was depressed but that was not the root of my problems, it was a result of them.

It wasn’t until 2012 that I was finally diagnosed with EDS, by a Benefits doctor of all people. I was then able to get referred to Prof. Rodney Grahame’s hypermobility clinic at UCLH (Prof Grahame has now retired but the clinic is still there). I spent much of the next few years being farmed out to numerous doctors all over London; gastroenterology, uro-neurology, neurology, podiatry, physiotherapy, occupational therapy, dietitian. I had bladder tests, nerve conduction tests and the dreaded Tilt-Table Test. It all confirmed that I had EDS, POTS (Postural Orthostatic Tachycardia Syndrome) which is a form of dysautonomia, and secondary Fibromyalgia. And I learned that my IBS was connected to the EDS.

I suffer nerve compression in my elbows and sciatic area. I’m starting to get nerve pain in my fingers and toes. I have bladder urgency and frequency. I get up 4-6 times at night to go to the loo. My joints feel loose and are constantly slipping, or subluxating (partially dislocating) with occasional dislocations. I subluxated my shoulder 18 months ago walking my Yorkie Russell when she was a pup. I ended up tearing part of my rotator cuff which still hasn’t healed properly. My fingers, wrists and elbows pop out almost daily, sometimes just from combing my hair or brushing my teeth.

I find the POTS very hard to deal with, maybe more so than the pain from the EDS. In fact, this was one of the main reasons I got rid of my car. My body doesn’t cope well in the vertical position. My temperature doesn’t regulate well. I have poor balance, constantly stumble. I get very dizzy, experience visual and auditory distortions. Sometimes I black out. My heartbeat palpitates and races (90-120 bpm), blood pressure crashes (90/45) or spikes (170/135). My hands and face go numb and spasm. I have blacked out in public places several times so I now wear medical badges around my neck when I go out. Or sometimes I feel Potsy and have to lie on the floor before I collapse. Mostly, I just tend to not go out very often, especially alone. It’s scary and embarrassing for me and for the people around me.

If I want to go out I have to make sure I have 2-3 free days before and after so I have time to rest and recover. I can’t really do multiple things in a week as one outing can wipe me out for days, sometimes weeks. If I do go out I have to plan strategically who’s coming with me, how I’m getting there, how far I may have to walk, how long I have to be upright for, where are the toilets, will I have to negotiate stairs. And as I have stairs at home, I frequently sleep on my sofa instead of going up to bed. But the toilet is upstairs so I have to use a commode in my living room. I struggle getting in and out of the bath for a shower so I mostly wash in a bowl downstairs. All these little indignities add up so it’s really important to have a thick skin and a sense of humour.

I don’t sleep well, usually 2-4 hours of broken sleep at night if I’m lucky. Sometimes I sleep all day. I have to be vary aware of my pacing or I have massive crashes or flare ups that can last for weeks. When I’m having a flare up I tend to hide away from everyone because I worry they’ll get fed up with me bailing on them or not having the energy to talk. Sometimes I go too far the other way and try to emotionally support everyone all the time because I feel it is the only thing left that I can do for the people I love, and then I have nothing left for me.

I’m constantly struggling to find where my line is. I’m learning. It’s important to push, but only up to the line, not over it. After spending 3 weeks in Stanmore Hospital’s Pain Rehab I think that maybe, sometimes, I’m even winning. I learnt so much, and met some amazing people there that have become very important to me, a little network of people who I don’t have to explain to, or make excuses to or feel guilty around. It helps so much. I met others who have it much worse than I do and yet still laugh, still smile, still live their lives to the fullest of their abilities. I’m now exercising (very carefully) and getting stronger. I’m pacing better. I’m planning nice things to do with my friends and family. And, God knows, I’m blessed to have friends and family that support me, even if they don’t completely get it. To those of you who have been by my side every step of the way, I give you my thanks. I wouldn’t have remained intact without you. You have my deepest love and appreciation. My son, Akira, is my biggest source of support and he never complains. He works, goes to college and helps me out at home. He comes with me to my hospital appointments. We plan fun days out at least every couple of months so we have nice things to look forward to. We make memories. And we laugh. A lot. I hope he knows how much I love him and value him, and how proud of him I am.

That’s really why I decided to share my story. Perhaps I’ve been too scared of being pitied or embarrassed by my limitations to really explain to the people I care about exactly how this condition affects me. Perhaps I’ve stepped away from people out of fear they’ll step away from me. That’s something I’m working on. Let me say right now, I neither want nor need your pity. Or sympathy. Just understanding and compassion, your friendship. Some of you I don’t see much of anymore, and that’s largely on me. I miss you. Please don’t be afraid to come over or invite me places, and please understand if I have to say no that it’s not because I don’t care. And though I may not be able to do all of the things I used to do there are other things I can do. Maybe you could come have a cuppa with me and laugh when I fall over and then help me up off the floor. Maybe you could come with me when I take the dog out on my scooter instead of meeting for a drink, or do a workout session instead of going dancing.

And maybe sometimes we EDS-ers just need time and patience and an arm around the shoulder while we grieve for the person we were, and accept, adjust and embrace the new version of who we are now. Don’t give up on us. We’re still us, just a bit different. And who says different is less?

The Tournament by Matthew Reilly, Book Review

Goodreads Blurb 

The year is 1546.

Europe lives in fear of the powerful Islamic empire to the East. Under its charismatic Sultan, Suleiman the Magnificent, it is an empire on the rise. It has defeated Christian fleets. It has conquered Christian cities.

Then the Sultan sends out an invitation to every king in Europe: send forth your champion to compete in a tournament unlike any other.

We follow the English delegation, selected by King Henry VIII himself, to the glittering city of Constantinople, where the most amazing tournament ever staged will take place.

But when the stakes are this high, not everyone plays fair, and for our team of plucky English heroes, winning may not be the primary goal. As a series of barbaric murders take place, a more immediate goal might simply be staying alive

My Review

Rating: 3.75*

For many years Matthew Reilly has been my favourite action story writer. I’ve happily jumped on board both the Scarecrow and Jack West Jnr trains, and thoroughly enjoyed every crazy ride. Say what you will about the plausibility of his stories, but you cannot deny they are fun. That’s why I read them.

Which is why I’m still unsure how I feel about The Tournament. Mr Reilly has certainly been expanding his repertoire over recent years with books such as Hover Car Racer—which has children as the main protagonists—and The Great Zoo of China—fronted by a female lead—which digress somewhat from his usual fare. But both of these books still pack a punch on the action front, even if the packaging is vastly different. The Tournament, however, is uncategorically historical fiction, centred around a very young Elizabeth I and her tutor Roger Ascham. I will admit that history is not my strongest suit, but the older I get the more I love it, and it was fascinating to learn that Roger Ascham was a real person and really did tutor the young Elizabeth. Mr Reilly seamlessly weaves fact and fiction, and really captures a sense of the era.

The story is set in Constantinople and centres around a chess tournament arranged by the Sultan himself. Both the Roman Catholic Church and Islam feature in this story, not especially from a religious point of view, more from how intrinsic they were to the time and place the story was set, and I liked that. I liked how they were part of the story and yet not the focal point of the story, and I liked how the conflict was about the people and not their religious orientation or beliefs. The writing was clean, the research thorough and the dialogue felt authentic to the time, but I found the story itself to be a little weak. Perhaps this was because I’m so used to Mr Reilly’s usual fare of relentless edge-of-your-seat action, perhaps it was in part because The Tournament has a bit of an identity issue. The story, I felt, would have been better suited to a younger audience, but the sexual content rules it out of that genre. It leaves the book rather betwixt and between.

Which pretty much sums up my feelings about it. All told, a good one time read but I’m not sure who I’d recommend this too. I’d rather have had another helping of Scarecrow. That being said, I’m very interested to see where Mr Reilly goes next…

The Knife of Never Letting Go (Chaos Walking #1) by Patrick Ness, Book Review

Goodreads Blurb 

Prentisstown isn’t like other towns. Everyone can hear everyone else’s thoughts in an overwhelming, never-ending stream of Noise. Just a month away from the birthday that will make him a man, Todd and his dog, Manchee — whose thoughts Todd can hear too, whether he wants to or not — stumble upon an area of complete silence. They find that in a town where privacy is impossible, something terrible has been hidden — a secret so awful that Todd and Manchee must run for their lives.

But how do you escape when your pursuers can hear your every thought?

My Review 

Rating: 4.5*

I’m not quite sure where to start with this book as I have some conflicting opinions on it, but before I dive into my review this book certainly wins the award for Best Opening Line:

“The first thing you find out when yer dog learns to talk is that dogs don’t got nothing much to say.”

There may be spoilers if you haven’t read it yet.

What I didn’t like was the incessant nature of the violence and the running of the main charcters, Todd and Viola. I actually found it exhausting. Some moments to pause and catch your breath as a reader may have made the action more shocking. I’m the kind of reader that will stay up all night reading a book if I’m enjoying it, but this book required frequent breaks.

I did, however, like the main characters. Their relationship developed nicely and didn’t feel contrived. My favourite was Manchee the dog and (SPOILER ALERT!!!) I’m not sure if I’ve forgiven Patrick Ness for killing him off. I was genuinely distressed at his demise (SPOILER OVER!!!)I also liked how the world the author created was three dimensional, if at times a little hard to picture due to the amount of detail he provided.

Also, I must applaude the author for not patronising his younger audience. He did not shy away from the horror on account of protecting young minds. I think if he had done that the book would not be what it is, which is a fantastic read, thought provoking, and lingers in the mind long after you’ve reached the end.

All told, a must read book.

Mark of The Demon by Diana Rowland, Book Review

Goodreads Blurb 

Cop and conjurer of demons, she’s a woman in danger of losing control to a power that could kill….

Why me? Why now? That’s what Beaulac, Louisiana, detective Kara Gillian was asking herself when an angelic creature named Rhyzkahl unexpectedly appeared during a routine summoning. Kara was hoping to use her occult skills to catch a serial killer, but never had she conjured anything like this unearthly beautiful and unspeakably powerful being whose very touch set off exquisite new dimensions of pleasure. But can she enlist his aid in helping her stop a killer who’s already claimed the lives’and souls’of thirteen people? And should she? The Symbol Man is a nightmare that the city thought had ended three years ago. Now he’s back for an encore and leaving every indication on the flesh of his victims that he, too, is well versed in demonic lore.

Kara may be the only cop on Beaulac’s small force able to stop the killer, but it is her first homicide case. Yet with Rhyzkahl haunting her dreams, and a handsome yet disapproving FBI agent dogging her waking footsteps, she may be in way over her head…

My Review

Rating: 4*

So this was an interesting one for me as it was a little outside of my usual fare. It was a real combination of police-procedural and urban fantasy, with a healthy dose of humour and just a dash of eroticism. I think Ms Rowland did a seamless job of blending all those elements together and the one constant throughout was Kara. She was a great lead character as she was imperfect, flawed and ordinary except for when she was extraordinary. I like her vulnerability, it makes her extremely human in sometimes inhuman situations.

I must confess to taking an immediate and very shallow liking to Rhyzkahl. Ryan, on the other hand, was a slow burner, intentionally so I think. The two male leads really make you question the concept of good and evil, reminding me a little of Anne Rice’s Memnoch the Devil.

All told, an enjoyable read and I look forward to finding out what happens to the trio in the next one.

The Great Zoo of China by Matthew Reilly–Book Review

 

Goodreads Blurb 

GET READY FOR ACTION ON A GIGANTIC SCALE

A high-concept, action-packed thriller from the bestselling author of SCARECROW AND THE ARMY OF THIEVES.

It is a secret the Chinese government has been keeping for 40 years. They have found a species of animal no one believed even existed. It will amaze the world.

Now the Chinese are ready to unveil their astonishing discovery within the greatest zoo ever constructed. A small group of VIPs and journalists has been brought to the zoo deep within China to see its fabulous creatures for the first time. Among them is Dr Cassandra Jane ‘CJ’ Cameron, a writer for NATIONAL GEOGRAPHIC and an expert on reptiles.

The visitors are assured by their Chinese hosts that they will be struck with wonder at these beasts, that they are perfectly safe, and that nothing can go wrong…

 

My Review

Rating: 4*

I always look forward to a new Matthew Reilly book and I’ve been spoilt of late. First, there was the pleasure of The Four Lengendary Kingdoms which I listened to in December, then this book, and I have just downloaded The Tournament which I will be listening to next. I mention these other books here to highlight the versatility of this author and how his writing is constantly evolving and improving. One thing that remains the same throughout all of his books, however, is how much fun they are!

What was different about this book is CJ, the first female lead in a Matthew Reilly action book. Matthew Reilly never spends much time delving into the depths of his characters personality and yet, throughout the course of his stories his characters come to life and their personalities shine through. CJ as the hero was no different, except maybe she’s a little more ordinary than Scarecrow and Jack West Jnr, which just goes to make her feats of derring-do all the more impressive. She’s kick-ass, intelligent and brave and I hope we see more of her in the future. I’d like to see where Mr Reilly takes her.

As far as the story itself goes—well, that’s a little more tricky to describe. Let’s say it’s a slightly different take on a story we’ve been told many times before. Comparisons with Jurassic Park are inevitable but I think Reilly’s attention to the details of his creations just about makes it work. And let me tell you, once the action gets going it doesn’t let up, not for a minute. The stage is big, the players are huge and the action is relentless.

All told, it’s not one of my favourites but it’s a solid addition to the Matthew Reilly catalogue that gave me two days of fun.

The Four Legendary Kingdoms by Matthew Reilly–Book Review

 

Goodreads Blurb

There are 16 contestants, but only one will survive.

The last thing Jack West Jr remembers is arriving for a meeting at a top-secret military base with his family in tow. Now he awakens to find himself in a hellish scenario.
Jack has been selected to take part in the Games, a series of deadly challenges designed to fulfil an ancient ritual. If he chooses not to compete, both he and his daughter will be killed.

With the fate of the earth at stake, Jack will have to traverse diabolical mazes, fight ruthless assassins and face unimaginable horrors that will test him to the limit. In the process he will discover the mysterious and powerful group of individuals behind it all: the four legendary kingdoms.

 

My Review

Rating: 5*

I cannot begin to describe my excitement over this book!

Maybe it’s because I haven’t read a good action book in a while. Maybe it’s because it feels like ages since Matthew Reilly‘s last Jack West Jnr book. Actually, it has been ages since his last Jack West Jnr book. Eight long years, to be precise. But now I’m rambling. And I’m rambling because, not only is this another adrenaline-fuelled rip-roaring yarn from one of the best action story tellers out there, it also has the mother of all spoilers that I really want to tell you about but absolutely won’t! I can’t! I mustn’t!

What I can talk about is how much I loved the premise of this book. It has a slight feel of the Hunger Games but for adults. Jack, amongst others, is kidnapped and taken to an arena in order to take part in the Hydra Games. In short, nine spheres have to be acquired from the arena—whilst also surviving what the arena throws at you—in order to save the world. The arena is creative, imaginative and utterly without mercy. The odds are definitely stacked against Jack in this one. And if you thought the Hunger Games were brutal, this is brutal squared. I don’t know how he does it but just when you think Matthew Reilly has taken Jack to the point of no return he pulls it out the bag.

One of the pluses of having waited so long for the next Jack West Jnr book is that Lily, Jack’s adopted daughter is now twenty and has a featuring role in this story. It was also cool to catch up with Stretch and Pooh Bear. I was totally absorbed by this book right from the beginning even if much of the foundation idea is somewhat unbelievable.

But that’s exactly what makes a Matthew Reilly book so engaging. You leave your disbelief at the door and hop on board the Matthew Reilly Crazy-train to Funsville.

Heaven by Christoph Marzi – Book Review

Goodreads Blurb

The night that Heaven lost her heart was cold and moonless. But the blade that sliced it out was warm with her dark blood…

David Pettyfer is taking a shortcut over the dark rooftops of London’s brooding houses, when he literally stumbles across Heaven: a strange, beautiful, distraught girl who says that bad men have stolen her heart. Yet she’s still alive…

And so begins David and Heaven’s wild, exciting and mysterious adventure—to find Heaven’s heart, and to discover the incredible truth about her origins.

Part thriller, part love story and part fairy tale, this brilliantly original novel from a bestselling German author will take your breath away…

My Review

Rating: 4*

This book was a real surprise. It had a gauzy, ethereal feel to it and I loved that it was set in the familiar streets of London. I was immediately taken with the premise of a girl, found on the roof of a city building by a young lad doing parkour, who says her heart’s been stolen.

I found Marzi’s writing to be confident, his characters were intriguing and likeable, and I found myself to be quite captivated by his story. I’ll definitely look out for what else this author goes on to write.