Guest Post: Raising awareness for National ME Awareness Week 2020 by KT King

Last year I had the pleasure to meet KT King here on my blog and we discussed her Little Eden books, writing and health.  KT King has suffered for over 27 years with the chronic and invisible disability called Myalgic Encephalomyelitis also called Chronic Fatigue Syndrome. She is trying to help raise awareness for this terrible, debilitating and life destroying disease. The main heroine of Little Eden, Sophie Lawrence, also suffers with CFS but she is still a heroine none the less.

I am pleased to pass this post over to her to discuss a subject close to her, ME/CSF Awareness Week.

Raising awareness for National ME Awareness Week 2020 by KT King

 

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 Imagine if the self-isolation and social distancing you have been experiencing these last few weeks was going to continue for the rest of your life?

That’s right, for the rest of your life – without let up, without reprieve, without end.

On top of being stuck inside, unable to shop, see your friends, go on holidays, go to the pub, a café or the supermarket, you feel as if you have the flu 24/7. Your body won’t function. Everything aches. You find even the smallest tasks, like taking a shower, cooking a meal or reading a chapter in a book take all your energy.

Millions suffer from this misunderstood illness worldwide but there is little research and no known cause or cure. The World Health Organisation has registered it as an epidemic but governments are still not helping those affected.

It can happen to anyone at any age.

Living in isolation, often bed and housebound, without an income or state support, without medical help or carers, sufferers of ME are forgotten by society and rely on family charity to survive.

We were never supported on TV, by our neighbours or communities, the NHS or carers, we were not given mental health support or had our wages paid at 80% when we had to give up work or lost our businesses. Most of us live in poverty, forgotten and blaming ourselves because no one believes us.

When you return to normal, we will still be in in lockdown without hope.

More about me

KT Image

KT King

Many may wonder how I can write novels if I have ME/CFS. I am able to write when I don’t need to do  anything else. The fluctuation of the illness baffles everyone as does the resolve of those with it to battle on trying to make a living. I lost my home, my income and my independence in 2012 coming back to live with my elderly parents on whom I now rely for physical daily help and financial support. By age 40 I had lost the battle with ME.

Writing too much gives me migraines so I can only write a few days a week for about an hour at a time on what is called ‘a good day’. I write through chronic pain and fatigue but it keeps me alive and it keeps me sane.

Mental and emotional health deteriorate for all of us because we can rarely socialise or see friends. We feel we have no purpose or usefulness and many of us are in terrible pain 24/7 with Fibromyalgia which often accompanies ME.

We can either give up or we can try to do something even if it’s just a little thing on ‘a good day’.

Becoming a published writer is a lifelong dream come true and escaping into Little Eden helps keep the suicidal thoughts at bay. I hope it’ll be a beautiful escape place for you too. One of the main things readers say is that they would love to live in Little Eden which makes it all seem worthwhile!

I’m an indie author, using my savings from before 2012 to publish. I can’t meet deadlines of publishers or do the usual sales promotions.

I can spend months, even years unable to get out of bed so I need all the help I can get spreading the word about my books, especially from kind book bloggers like Katie.

I find crafting is good for mental and emotional health so when I can I make handmade jewellery to give to friends and to sell in my Etsy shop where all the gifts inspired by Little Eden. I rarely have the energy to bake but now and again I manage to make a cake or some cookies! Some of my recipes have made their way into the novels.

Come and browse in my little Etsy shop http://bit.ly/KTKingShop

You can follow the global campaign called MillionsMissing and/or KTKing on Twitter.

http://bit.ly/KTKingTwitter

For more information please visit the ME Association website https://www.meassociation.org.uk/about-what-is-mecfs/

About Little Eden Books

Little Eden Books thrillingly combine the supernatural and spirituality in a magical mystery set in the cosy, idyllic and ancient sanctuary town of Little Eden. The hero, Robert Bartlett-Hart, goes on a journey of self-discovery and enlightenment with the help of his friends and plenty of tea and cake! The novels are a comical yet genuine look at the spirit world based on the work of psychic, healer and ascension coach, KT King.

To purchase Book One and Two as Kindle or paperback just click on my linktree https://linktr.ee/ktkingbooks

B1 and B2 image paperback

Thank you for visiting my blog KT and good luck in spreading awareness of ME and CSF.

Keep an eye out for future posts on KT’s books here this week.

Happy reading and stay safe!

Love

 

Book Review:Chronic Illness Learning to Live Behind My Smile by Jane L. Edwards

This books arrival was timely. Not only is it Vasculitis Awareness Month but also the 10 years anniversary of finishing my last course of chemo to control the inflammation in my brain, cerebral vasculitis. I thought when I was diagnosed after I completed this treatment I would step back into my old life. I was wrong as chronic illness is not like that. Life is never the same.  This is a book I wish I was given at the time, as it gives realistic expectations of a new life with a chronic condition, tips to help you on your new journey and how to keep your smile.

Book Review:Chronic Illness Learning to Live Behind My Smile by Jane L. Edwards

Chronic illness book

Title: Chronic Illness Learning to Live Behind My Smile

Author: Jane L. Edwards

Publisher: Independent

Release Date: 1st July 2019

Genre: Non-fiction, Self care

Purchase Link: Amazon 

Social Media Links: 

Website: chronicillness.co.uk

Twitter: @Jane_L_Edwards

Blurb:

The problem with a long-term chronic illness is that it isn’t a quick fight, taking a few drugs and having a couple of weeks in bed will not cure it. It isn’t ever an out and out win. You never beat the illness forever. It is a long-term war, some battles you lose and some you win: It is an on-going campaign. It is a chronic illness, after all. The struggle is about getting to a place where you can live together, the illness and you. Trying to make the most of the environment you share, an attempt to make it a positive life.This book is a collection of experiences I have faced living with a chronic illness. Lessons I am still learning from and having to deal with every day. It is like living in no man’s land, somewhere between feeling ill and feeling healthy, but not really being healthy or sick. I hope, by sharing my experience, I can help others with their journey. Help people to deal with their chronic illness or give some tools to help make some sense of living with a chronic condition. Note: several sections of the book talk about the U.K. health system NHS.

My Thoughts

At the beginning of this book Jane says it contains the information she wishes she had at the beginning of her journey; she has achieved this goal completely. I wish I had this book when I walked out of the hospital with a diagnosis of a rare disease and chronic illness. It would have helped knowing how things are,  tips to avoid the pitfalls and smooth the curves along the way. Chronic illness can be a lonely journey and it would have helped having something like this on my side to refer to even if it was just reassurance that I was doing okay and the best I could do at that moment.

Her words resonate with me and like her I am several years into my journey with a chronic and rare disease which has made me find my own ways to cope. Many of them are similar to hers. Reading this book earlier may have given me a short cut to some. I love the quotes includes especially the poem by William Ernest Henley,  and have taken it to heart as my message to myself. This was one of those books I nearly committed a crime against books and highlight important passages (post it notes have been used instead). Her thoughts on the health care system, industry and health care workers mirror mine. It is easy to read and her warmth and humour shines through. It includes her story, tips and support on how to deal with yourself, friends and doctors. It is her story but I think it will help many. I would love this to be available to people who need it and to doctors, and nurses dealing with patients. It would help so much.

Thank you so much for my copy, Jane L. Edwards so I could give my honest opinion. It will be on my forever shelf for reference and recommended to those I think would benefit.

Happy reading and stay safe!

Love

 

Rare disease day; The Realities of Vasculitis and Dystonia

10 years ago, I was hooked up to a drip having chemo after being diagnosed with cerebral vasculitis. Three years later I added a rare form of dystonia called dopa-responsive dystonia (DRD) to my medical records. Both are rare diseases and both were only diagnosed after years of GP visits and finally finding a consultant who listened and looked outside the box. Both times I felt relief rather than fear as I had an explanation of what was going on rather than being fobbed off with the line “it’s all in your head”. Perversely it was but not in the way that was meant when those hateful words were uttered. Both times I thought treatment would cure me and I would get my old life back; both times I was wrong.

dystonia text box

Cerebral vasculitis affects one in a million people while DRD affects one in two million. With odds like that I would rather have won the lottery. Instead these conditions were like a bomb going off in my life. In one swoop I lost my beloved library career, friendships and my mobility. Gone were the days of long walks in the countryside with my dogs, and browsing in shops alone (I really miss that. The joy of being independent, spontaneous and being ALONE). Instead I see four walls and the duvet far more than I should. Thank goodness for books, the internet which helped find my new friends, and my family.

Rare diseases do not just affect the diagnosed person; it has devastating effects on the whole family and friends. Husbands and children become carers, jobs are lost, education is affected and relationships are destroyed. Support is hard to find but social media becomes a lifeline.

The Charities

Luckily, when I was diagnosed with vasculitis, Susan and John Mills took over the vasculitis charity, Vasculitis UK. They transformed it from a small charity and basic website offering information to a go to place for patients and doctors  worldwide. Not only do they offer individual support they have increased awareness with medics, have conferences and fought for new treatments and research. They are both phenomenal.

The Dystonia Society has supported me on my journey but like many charities in recent years, funding has been cut which has had a big impact on their services. Despite their tireless efforts to raise awareness of dystonia,  DRD remains a page on the screen. Warriors of Dystonia has announced an exciting project to help dystonia awareness and support the dystonia charities. More info can be found here.

The best thing anyone can do is help is to raise awareness of these rare conditions and  charities that support them. Share tweets and posts. This allows people to find them and fund raise. This is why Rare Disease Day is so important because together the small charities are stronger. Awareness helps improve diagnosis, support and research.

Uncertain times ahead

Rare diseases in UK have an uncertain future. With only a small number of patients with each disease ,specialists are hard to find and keep. We rely on the cooperation of other countries and research. Leaving Europe has already impacted on ongoing and future research, grants and medication availability. What will happen next who knows?

There are always positives

It’s not all gloom. My life has changed but I have a new appreciation for the small things, family and friends.  I am grateful for my meds and having the movement they offer. The friends I have are the best- they have seen me at my worst and stuck around. I have time to follow my love for reading and I have rediscovered my old passion – writing. This has brought new friends and new opportunities. Maybe one day it will offer a new career.

Thanks for reading such a long post

Love

P.S Its the last day to enter RNA 60 giveaway to win 60 books. Click here for more info and to enter. Good luck!

The Complicated Business of Talking with Dystonia

The Complicated Business of Talking

Following my last post and the goal to reveal snippets of life with living with dystonia it felt apt to share the first ever post I made on my old The Ups and Downs of being Wobbly in 2013. It only feels like yesterday.

Dopa-responsive dystonia affects all my muscles now including my voice.

The Complicated Business of Talking

September 2013

I never realised how complicated talking and holding a conversation was until it began to go pear-shaped. To talk to someone many things have to occur:

1, you need to listen and remember what the person is saying
2, you need to think of an answer and the words you wish to use to express it
3, send these words to your voice box, tongue and muscles in your mouth
4, the voice box has to do what voice boxes do and your muscles have to co-ordinate themselves so the words come out.

If any of these stages falter the conversation can become tiring, difficult, frustrating and bizarre. Sometimes only one or two stages of the above partially or completely fail so I can work round it. Other times nothing will work so it’s easier to keep my mouth shut.

I can ask my family multiple times the same question before I will remember it. They must get sick of me asking 5 times whether they would like a cup of tea before I can remember it long enough to get to the kitchen. I would definitely be useless as a waitress. Telephones and having conversations in supermarkets are the worst. I think my brain decides that holding the phone and having a conversation in a noisy place is too hard and it prefers to go on strike.

There are times I know what I want to say. I can even visualise it but the word refuses to come. Good job my family are good at listening to convoluted explanations when a simple sentence would have done. Why say “it’s on the table” when you can say ” it’s on the thing in the kitchen. We sit at it for dinner”. Gestures are good too. My daughter will win at a games of charades with the practise she gets.

Other times, the words are there but trying to get my tongue, voice box and muscles in my mouth to work together is impossible over the stupidist words. Why is it so hard to say peas or beans or yes? At least the long explanations can resolve that obstacle with “green round things” or “red round things”. Again, charades work or you can play a game of fill in the blanks of a sentences. For example, “Would you ____ a cup of ____ ?

If all else fails, you can just be quiet and nod in the right places.

I am so lucky I have a great family who accepts our new way of communicating and they are becoming very good at it. I am lucky I have my trusted yellow ones (Sinemet) which gives my brain a kick start so I can have periods of the day when talking is easy and understandable. In these brief periods, I can do the phone calls I need to make and talk to friends when they visit. I guess, however tiring, difficult and frustrating talking can be, it can make life different and more interesting.

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Green Rounds Things

Love

Book review: The Curious Heart of Ailsa Rae by Stephanie Butland.

Duvet days are continuing so I was appreciative to receive a copy of The Curious Heart of Ailsa Rae by Stephanie Butland to read. I loved her previous book Lost for Words so I settled down with a cuppa, jelly beans — my new favourite thing thanks to Sunflowers in February,  and Nigel snuggled next to me hoping to be equally impressed.

Book review for The Curious Heart of Ailsa Rae

The Curious Heart of Ailsa Rae

 

Title The Curious Heart of Ailsa Rae

Author Stephanie Butland

Publisher Bonnier Zaffre

Release date 19th April 2018

Blurb

Loveday Cardew won everyone’s heart in Lost for Words, now it’s time for Ailsa Rae to live, love and be loved . . .

Ailsa Rae is learning how to live.

She’s only a few months past the heart transplant that – just in time – saved her life. Life should be a joyful adventure. But . . .

Her relationship with her mother is at breaking point and she wants to find her father.

Have her friends left her behind?

And she’s felt so helpless for so long that she’s let polls on her blog make her decisions for her.

She barely knows where to start on her own.

Then there’s Lennox. Her best friend and one time lover. He was sick too. He didn’t make it. And now she’s supposed to face all of this without him.
But her new heart is a bold heart. 

She just needs to learn to listen to it . . .

My Thoughts

As a duvet dweller AKA Spoonie or someone with a chronic illness I  relate much to Ailsa thoughts and the emotions she expresses in her blog before her transplant and after as her health improves. She uses her blog to connect with people outside hospital bed as many do, raise awareness of the ability of transplants to change someone’s life and help make decisions with her life. I enjoyed the pleasant mixture of blog posts, email, and narration.

It follows Ailsa as she ventures into the new world of wellness, which means negotiating her close relationship with her mum and discover her well self. The book comes across as well researched and makes you connect with Ailsa. It is uplifting and made me want to get my dancing shoes on and dance. Or at least put the music on loud and sway imagining I was on strictly come dancing. As with her previous book Lost for Words Stephanie Butland has given me another character to love and remember.

Would I recommend?

Yes, for its humour, insight into the life of someone dealing with chronic illness and beyond as well as its delightful characters. This is one of those books I want a physical copy of for my bookshelf so I can indulge again in the future.

Thank you Netgalley and for sending me an advanced copy of The Curious Heart of Ailsa Rae in exchange for an honest review.

 

Happy reading!

The problem of the ever growing TBR list

The problem with online book clubs, reading reviews and Kindle deals as well as library browsing and retail shopping, my TBR list is growing faster than I can physically keep up with. My reservation list at the library is full, my bookshelves are overflowing and books are now hiding unsucessfully under the bed. Luckily this month, the theme is to read something from your pile of books waiting to be read. – phew!

I am now faced with the dilemma of what to read? In my stash, there are books from new authors, favourite authors alongside old favourites that long to be revisited, it is difficult to choose. So far I have:

The Gift by Louise Jensen

The Path Keepers by NJ Simmonds

The Other Sister by Rowan Coleman

Angelology by Danielle Trussoni

The Shadow of the Wind by Carlos Ruiz Zafón

Lyrebird by Cecelia Ahern

Last seen alive by Claire Douglas

Inkheart by Cornelia Funke

Drowning Ruth by Christina Schwarz

The Mists of Avalon by Marion Zimmer Bradley

and many more. If you have any recommendations on which to read, comment below.

 

What are you reading this month?

Meet the Author – Tom Seaman

tom-seaman-headshotAbout Tom Seaman

Tom Seaman earned his Bachelors Degree in Elementary Education and Psychology in 1994. After college he pursued private business ventures in the health education field. In 2001, he returned to school to pursue a Masters Degree in Counseling, during which time he developed a painful neurological movement disorder called dystonia. After living many years with debilitating chronic pain and emotional trauma, Tom eventually learned various techniques for better managing his symptoms. In 2012, he became certified as a life/health coach and currently owns a coaching/consulting practice where he helps people work through various life challenges. In 2015, Tom authored and published his book, Diagnosis Dystonia: Navigating the Journey, which has received rave reviews. It has also been recognized by the Michael J. Fox Foundation as one of their suggested resources. In his spare time, Tom writes his own blog and guest blogs, as well as articles for online publications such as The Mighty and Patient Worthy, to educate and raise awareness about dystonia and other chronic health conditions. He is also a support group leader for the Dystonia Medical Research Foundation, serving as co-administrator for their online dystonia support forum. To learn more about Tom and get a copy of his book, as well as links to his articles and videos, please visit www.diagnosisdystonia.com. For information about his life/health coaching services, please visit www.balanceyourlifecoaching.com. Follow him on Twitter @dystoniabook1.

How did you become an author? How I became an author is an unexpected story of many twists and turns. Unlike most people I know who say they want to write a book, it never even dawned on me until a major health issue significantly altered the course of my life. Writing became a form of personal therapy and healing, which then turned into educational and inspirational material for others.

Up until the age of 30, I was enthusiastically enjoying my life when all of a sudden I began to have health problems. A little pain and stiffness in my neck gave way to unrelenting muscle contractions and pain unlike anything I had ever experienced, and it just kept getting worse. After many blank stares at my distorted body from doctors who had no idea what was wrong, I eventually learned that I had a neurological movement disorder called dystonia. In my case it affects my neck, which is called cervical dystonia.

It began in 2001 when I returned to school to obtain my Masters Degree in Counseling after seven years in private business. Due to the severity of my growing dystonia symptoms, I was unable to complete my degree. For the most part, I was completely disabled. I also gained 150 pounds over the course of several years due to my sedentary lifestyle from severe chronic pain. Needless to say, dystonia turned my world upside down, altering the course of my life in ways I never imagined possible.

After numerous unsuccessful treatments and years of physical and mental suffering, I took the bull by the horns and dedicated myself to learning and applying a variety of symptom management techniques that greatly improved my quality of life. In addition to better managing my dystonia symptoms, I lost the 150 pounds I gained. Life as an obese person after previously being a fit, competitive athlete is a book of its own yet to be written.

In 2012 I became certified as a life/health coach, but I was struggling to get my business going. I was still trying to find my bearings from the way dystonia so dramatically altered my life. I felt lost and was starting to wonder about the meaning and purpose of my life. I needed something to get me out of the fog. As crazy as it sounds, one day something inside me said, “write.” The voice was loud and clear. It was almost like a command. I immediately put pen to paper.

As I began writing, I felt more liberated and clear headed. After addressing the most pressing issues, I felt compelled to keep writing and I knew exactly what it had to be about: dystonia. Not only to better understand how to live more effectively with a chronic health condition, but to share with others the things I learned along the way to help them live as high a quality of life as possible.

diagnosis-dystonia-3d-coverTwo years later I published my book, Diagnosis Dystonia: Navigating the Journey. This combination autobiography, self help, education book provides treatment options, coping strategies, skills for daily living, and tools for dealing with the physical and mental challenges of life with a chronic health condition. Serving as a roadmap, this resource covers nearly every physical, emotional, and psychological aspect of living with a chronic condition. The information it contains actually transcends dystonia, making it applicable to any life challenge, health or otherwise.

Although I always enjoyed writing, I never thought I would write a book. It just began to flow as soon as my fingers touched the keys. I actually believe that the book found me, and at the perfect time, as have subsequent writings. Writing gives me a sense of meaning and purpose, especially when someone tells me that something I wrote changed their life. Now that’s pretty cool!!

What is dystonia and where can I learn more? Dystonia is a neurological movement disorder characterized by uncontrollable, involuntary muscle spasms  and contractions, causing repetitive movements, twitching, twisting, and/or abnormal postures. Muscle contractions can be sustained or intermittent and sometimes include a tremor. Dystonia can affect any part of the body, causing varying degrees of disability and pain from mild to severe. For more information, please visit the Dystonia Medical Research Foundation’s website: www.dystonia-foundation.org

What is your favourite book? The Road Less Travelled by M. Scott Peck

Who is your favourite author? Wayne Dyer

Is your writing influenced by the books you have read? In a way I suppose so. I mostly read self help, non-fiction, inspirational, and factual stories, as well as education/reference material, and my book, articles, and blogs are similar in content. However, with my background in social sciences, my main interest is capturing the human element that lies within all facets of life.

Where is your favourite place to read or write? I love to read and write on my back porch in the late afternoon and early evening when the sun is going down and the shadows on the ground are getting longer.

When did you begin writing and how did being published come about?  Ever since I was a little boy I was an avid reader and also wrote a lot of poetry. Although I disliked Language Arts classes in school, it was always my best subject. My book started as a journal for my own personal healing from a life changing health condition. It then expanded into a labor of love in an effort to help others.

If you have a genre you write, how did you begin writing in this style? Most of my writing stems from the chronic health condition I live with, but I also dabble in poetry and free writing that is unrelated.

Has being chronically ill influenced your writing and changed its direction? Most definitely! Each day I feel I gain new perspectives about life with challenges, whether they be my own or others. This provides me with greater understanding and empathy, which impacts the content and flow of my writing. I am always searching for greater connection with people beyond just their illness, as this is just one aspect of their interesting lives.

To learn more about me and my book, as well as my work as a life/health coach, please visit my websites: www.diagnosisdystonia.com and www.balanceyourlifecoaching.com

Book Reviews: Diagnosis Dystonia: Navigating the Journey

“This should be THE resource book for dystonia for many years to come!”

“Must read for dystonia sufferers, doctors, friends, and family.”

“This amazing book exceeds anything out there.”

“An outstanding resource on dystonia.”

“Thank you for your passionate, positive, practical book!”

“Tom has written the definitive book on dystonia.”

“If you have dystonia this is the book for you!”

“Without this book I may have lost my mind!”

“A brilliantly written, honest, and open book.”

“Tom’s book is the best! If you haven’t read it, get it! Read it! Share it!”

 

 

Save

Save

Time for a little bit of magic!

Dust off your Harry Potter’s, delve into the Discovery of Witches or head of into faeryland. This month’s theme is ‘Magic’

magical-book

Books are a form of magic in the way they can transport you from reality to a different place, time or universe and authors love the mystical worlds where anything that can be imagined is possible. Where will  your choice take you and what magic will you discover?

The Twists and Turns of Dystonia

September is Dystonia Awareness month so it seems fitting to review  3 books about the condition. This post originally appeared on blog Books, Tea and Snuggly Socks

When I was first diagnosed, as a bookworm, my  instinct was to find a book so I could find out more about this neurological condition. Google is great for many things but I needed words from people with the condition, to understand more and learn how to live with it. To my dismay, there were textbooks with prices beyond my bank balance but no sign of the books I craved, despite the condition being the third most common movement disorder and it affects at least  70, 000 people in the UK.  Roll on a few years I have found these.

A Twisted Fate My Life with Dystonia by Brenda Currey Lewis

A Twisted Fate

I stumbled across A Twisted Fate on Twitter and I am so glad I did. It has become one of my firm favourites in my Kindle library.

Written to spread much needed awareness of dystonia, Brenda Currey Lewis gives an honest, down to earth account of her life with generalised dystonia which began in childhood as well as a clear overview on what dystonia is.  Her story gives an insight into life with the condition and  shows how dystonia affects all parts of life including the lives of those around you. There were so many times I could relate to her experiences and I am glad my dystonia waited until I was older to surface in the 2000s. The writing style allows her strong character to come through and I imagine she would be amazing to talk to over a cup of tea.

I would recommend this easy to read, enlightening book to everyone who wants to find out more about the condition.

Diagnosis Dystonia by Tom Seaman

diagnosis dystonia pic

This was the book I wished I had found as I wobbled out of my neurologist’s room with a diagnosis. Diagnosis Dystonia covers a range of topics a newly diagnosed person needs to know, as well as information for those who have had the condition for a while. It is a book which is obviously written  with care and consideration of what the reader will need. Part memoir, describing his own journey with cervical dystonia and part guide to this condition, it delves into the physical and emotional side as well as different types, treatments, daily living and gaining support from others. Tom Seaman has written a book that gives an insight into the condition and shows ways to live with dystonia. It tells you there will be bad days but there are ways forward, to adapt and live your life. I have a rare form of dystonia (DRD) and there are parts that are not relevant but it doesn’t matter. There is something for everyone in this book. It can be read from cover to cover or dipped into when required. If I had this book when my own wobbly journey began it will look well-read with it opening naturally at certain chapters by now.

For those with the condition, it is a book of hope, determination and gives an insight into the world of dystonia so you can help yourself be your own advocate. For others, it gives you an awareness of the condition with all its ups and downs so you gain an understanding of the condition and support people may need.

Tom Seaman works hard to spread awareness via his blog

Misdiagnosed by Jean Sharon Abbott

misdiagnosed book

I have a rare form of dystonia – dopa responsive dystonia (DRD) which affects approx 1 in 2 million people. I have followed Jean Sharon Abbott on her blog Jean Sharon Abbott as she documents her life with this condition. I was excited to discover she was writing her memoir.

Misdiagnosed follows her life from childhood with the diagnosis of cerebral palsy  to when she was given the correct diagnosis of DRD. Unlike some dystonias, DRD can be treated with a drug commonly given to those with Parkinson’s disease. This small, yellow pill has the ability to transform lives. It can be the difference between  being in a wheelchair to climbing mountains. This positive book shows her strength and determination, the ups and downs of living with dystonia and appreciating the small things in life many people overlook.  It also highlights the need for awareness of dystonia so correct diagnosis can be given.

Jean Sharon Abbott’s has appeared on TV shows, written about in newspapers and magazines worldwide. Since her story has been told, others have been given the correct diagnosis so they are also living a life they never thought they would.

 

Useful links:

The Dystonia Society UK

Dystonia Medical Research Foundation

Michael J Fox Foundation

Meet the Author – Madeline Dyer

Madeline Dyer

Madeline Dyer

About Madeline Dyer

Madeline Dyer lives in the southwest of England, and holds a BA honours degree in English from the University of Exeter. She has a strong love for anything dystopian, ghostly, or paranormal, and can frequently be found exploring wild places. At least one notebook is known to follow her wherever she goes. Her debut novel, Untamed (Prizm Books, May 2015), examines a world in which anyone who has negative emotions is hunted down, and a culture where addiction is encouraged. Her second novel, Fragmented, is set to hit shelves in September 2016.

 

 

What is your favourite book?

This is such a tough question as my favourite book changes a lot, depending on what I’ve just read. At the moment, it’s probably THE ACCIDENT by C. L. Taylor—a great psychological thriller—but I also recently read Pintip Dunn’s THE DARKEST LIE (a YA thriller) and loved that. And, always near the top of my list, is THE CLAN OF THE CAVE BEAR by Jean M. Auel.

Who is your favourite author?

Again, this is a tough one! I think I’ll have to go with either Charlotte Bronte or Richelle Mead.

Is your writing influence by the books you have read?

I’m a firm believer that all writers are influenced by the books they’ve read, whether they realise it or not, and this is definitely the case with me. In fact, Jennifer Blanchard wrote a great post all about this (http://jenniferblanchard.net/how-your-reading-material-can-influence-your-writing/) and she is definitely right: books get under our skin, and writers are influenced by what they read—just as they’re influenced by what they see around them, what they watch on TV. We, as writers, don’t exist in vacuums, and we’re constantly influenced by everything going on around us and everything we experience.

I started writing YA speculative fiction after reading books in that genre, and absolutely falling in love with the possibility that genre offers; anything can happen and I love the freedom it has.

But there are a few of books in particular that definitely made me want to be a writer, even if I would be writing in a completely different genre: Jean M. Auel’s THE CLAN OF THE CAVE BEAR, WUTHERING HEIGHTS by Emily Bronte, L.A. Weatherly’s ANGEL, and Rachel Caine’s Morganville Vampires Series. It was reading these books that really inspired me, and I just knew I had to be a writer too.

Where is your favourite place to read or write?

I’m most productive with my writing when I’m curled up on the sofa or stretched out on my bed—I can easily manage 6,000 words on a good day, and have had quite a few 10,000+ word days recently. So, I’d say those two are my favourite places as I’m always happier after I’ve written a lot.

But for reading? Well, I love reading on the beach—even if I am heat intolerant due to dysautonomia!

When did you begin writing and how did being published come about?

I’ve been writing forever! I first began writing short stories seriously though when I was sixteen—and I had my first short story acceptance a couple of months later. I moved onto writing full-length manuscripts when I was seventeen, which was also the time when I became ill (developing several types of dysautonomia). It was my illnesses that really made me concentrate on my writing as it being a writer gave me a strong identity—I was a writer, not just a chronically ill girl. And I really hoped to make it as a full-time writer, especially after I became ill as my illnesses meant my career options were consequently rather limited.

In 2014, I was absolutely ecstatic to have four publishers offer on my fourth novel-length manuscript. And I was nineteen-years-old at the time. At the end of June 2014, I signed with Prizm Books, the YA imprint of Torquere Press, and they released my debut novel, UNTAMED, a dark dystopian, in May 2015. And then in January 2016 I signed a second contract with them for a sequel to UNTAMED; as such, FRAGMENTED is set to release on the 7th of September 2016.

If you have a genre you write, how did you begin writing in this style?

I mainly write speculative fiction (predominantly dystopian novels, science fiction and fantasy) and contemporary thrillers, for a young adult (YA) readership. At the moment, these are just the two genres (though the first category is more of an umbrella term!) that I feel compelled to write. I’m a firm believer that a writer must love what he or she writes—if we don’t, how can we expect a reader to fall in love with our world, with our characters? In such a way, I guess this could explain why my writings cover quite a large spectrum of genres, as switching between different genres helps keep me interested and so I don’t get bored with my work. My first two (published) novels are dystopians, but many of my short stories are science fiction and fantasy pieces, while the current manuscript I’m working on is a psychological thriller. I actually have only just moved into the thriller-territory quite recently, drafting my first thriller manuscript just over a year ago, but I just fell in love with the tension and suspense in this genre—and, as such, have been reading so many contemporary thrillers recently to really get to know this way of writing.

Has being chronically ill influenced your writing and changed its direction?

Being chronically ill has definitely made me more motivated and determined to succeed at being an author—and a successful one at that! My illnesses have taken away so much from me, but writing is one thing that I still can do, so I will keep writing. But I don’t think my illnesses have had an impact on what I write. Sometimes, when people hear that I’m a writer, and that I’m chronically ill, they expect that my characters will be too—and it surprises them when they’re not. But a big part of my writing is about escapism for me. My characters do all the things that I can’t, and my writing allows me to live through them.

 

untamed-2                             About UNTAMED (Untamed Series, #1)

As one of the last Untamed humans left in the world, Seven’s life has always been controlled by tight rules. Stay away from the Enhanced. Don’t question your leader. And, most importantly, never switch sides–because once you’re Enhanced there’s no going back. Even if you have become the perfect human being.

 But after a disastrous raid on an Enhanced city, Seven soon finds herself in her enemy’s power. Realizing it’s only a matter of time before she too develops a taste for the chemical augmenters responsible for the erosion of humanity, Seven knows she must act quickly if she’s to escape and save her family from the same fate.

 Yet, as one of the most powerful Seers that the Untamed and Enhanced have ever known, Seven quickly discovers that she alone holds the key to the survival of only one race. But things aren’t clear-cut anymore, and with Seven now questioning the very beliefs she was raised on, she knows she has an important choice to make. One that has two very different outcomes.

 Seven must choose wisely whose side she joins, for the War of Humanity is underway, and Death never takes kindly to traitors.

Buy UNTAMED: https://www.amazon.co.uk/Untamed-Madeline-Dyer-ebook/dp/B00XXOBB62/

Find out more: http://madelinedyer.co.uk/fiction/untamed/

fragmented1400                About FRAGMENTED (Untamed Series, #2)

After the terrible battle against the Enhanced Ones, Seven and Corin find themselves on the run. With the Enhanced closing in, Seven knows they need to find other people on their side. So, when the opportunity arises to join the Zharat, one of the last surviving Untamed tribes, it seems like the perfect solution.

 But the Zharat lifestyle is a far cry from what Seven’s used to. With their customs dictating that she must marry into their tribe, and her relationship with Corin breaking down, Seven knows she has to do something before it’s too late. But that’s easier said than done in a tribe where going against the rules automatically results in death.

 And, with the Enhanced still out there, nowhere is truly safe for the Untamed–least of all for the most powerful Seer in the world… and Seven soon discovers how far people will go in order to ensure that she’s on their side in the War of Humanity.

 Battling against the emerging web of lies, manipulation, and danger, Seven must remember who she was meant to be. Her life has never been more at stake. Nor has humanity itself.

Pre-order FRAGMENTED: http://madelinedyer.co.uk/pre-order-fragmented-today/

Find out more: http://madelinedyer.co.uk/fiction/fragmented/

Website: http://www.madelinedyer.co.uk/

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