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!

A belated welcome to 2020 and best books of 2019.

How come it is the middle of February already? It feels as if it should still be October last year. As time is galloping on, I am late sharing with you my favourite reads from 2019. I always enjoy looking back at my Goodreads challenge to see what I read in the past because it gives a warm feeling similar to meeting old friends in the street and likewise, you promise you will catch up with them soon but never have time to.  It was a year for some gems which I would not have discovered if it wasn’t for Rachel’s Random Resources and social media, so thank you Rachel Gilbey, other bloggers and NetGalley for their recommendations. These are the my favourites.

Favourites Reads from 2019

The Woman in the Photograph

By far, for it’s characters, passion and eye opening subject matter my book of the year has to be The Woman in the Photograph by Stephanie Butland. My review can be read here but it blew me away and one book, I recommend to many people. Feminism and its history was a topic I thought I had some knowledge about – I was so wrong.

 

The Boy, the Mole, the Fox and the Horse

The Boy, the Mole and the Fox by Charlie Mackesy was a surprise gift from fellow blogger, Julie Morris from A Little Book Problem blog. Its sweet, honest and full of wisdom reminiscent of Winnie the Pooh. It made me cry and give everyone a big hug.

 

The Lost Ones

 

The Lost Ones by Anita Frank. A delightful Gothic ghost story; it is perfect for a winter’s night.

 

 

Dead & Talking Kindle sleeve FINAL DES

 

Dead and Talking: A Porter and The Gliss Investigation by Des Burkinshaw was an unexpected gem with a thrilling story and characters I enjoyed getting to know. It has the potential to be a series I will eagerly follow. Click here for the review

 

Tell ne your secret

Tell Me Your Secret by Dorothy Koomson. Her books never fail to impress but this one has a darker edge I didn’t anticipate but wow what a read.

 

 

 

Dyed Souls Cover

Dyed Souls by Gary Santorella was another book that surprised me by its intensity and deep characterisation. It wasn’t the easiest topic to read but Charlie wormed himself in my heart and  I will never forget him or the life he led. The review is here.

 

 

the passage

 

The Passage by Justin Cronin. This was a reread after I watched the TV adaptation on Sky and I constantly kept saying “Well I’m sure that wasn’t in the book”. My enjoyment of the series grew but the epic novel is out of this world. It’s dystopian horrors kept me enthralled and petrified as I could see how a similar scenario could unfold and devastate the world.

 

Closer than you think

 

Closer than You think by Darren O’Sullivan for it’s ability to keep me awake at night with the horror potentially following me into my dreams.

 

 

Songs of UsThe Songs of Us by Emma Cooper was one of the first books I read in 2019 but it still holds a special place in my heart. Music is threaded into the story with a playlist available on Spotify. It is impossible to listen to The Beatles  Can’t Buy Me Love and not think of Melody, the main character in the opening chapters. The audio version of this book is perfect too. Get your tissues ready.

 

An author I discovered last year was Jenni Keer. I fell in love with her books as they have magic threaded through them and her characters have a knack of staying with you  If you haven’t read them yet do as they uplift these grey, winter days. The review for The Hopes and Dreams of Lucy Baker is here.

Also, the lovely Sharon Booth who has a back catalogue I have added to my TBR. With my love of witch books, how can I not fall in love with the witches of Castle Clair.  My Favourite Witch tingled with a delightful magic that made me smile. The last of the series, To Catch A Witch is out in April so watch this space for a review.

Which were your favourite books from last year?

Love

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.

rachel-gorjestani-2430895_1920

Green Rounds Things

Love

Goal of 2019 – shouting “This is me!”

Happy New Year! The turbulent 2018 is over and a fresh chapter has begun. The first day of the year is the perfect time to take this blog in the new direction as discussed in …. I will still be blogging predominantly about my love of books, with a hint of Flamingo Paperie cards but also an insight into my wobbly life. Ever since I wrote my first post 6 years ago on my first ever blog The Ups and Downs of being Wobbly I have been anonymous – no photos of me, and I never used my name until very recently just my pseudonym, Wobblypip. Why?

Fear  – of people I know reading my thoughts, being laughed at or told I was crap.

But no more. This year I want to make a small difference to dystonia awareness using this blog and claim my words as my own. It is time to step out of the duvet and say “this is me”. I watched The Greatest Showman on Christmas day and loved it, particularly the powerful song This is me. It gave me the final push for this introduction post only 6 years late.

I am Katie – book blogger, writer, tea addict, lover of snuggly socks and wobbly person. I live in Yorkshire near the sea with my hubby, daughter and my dogs.

20180128_125548

This is me

My blogging journey began in a blog  documenting my wobbly life in 2013 as I wanted to raise awareness of DRD but this side slipped away when this blog was set up to support  Duvet Dwellers Book Club a book club for spoonies I founded with two others. I loved talking about books with others but chronic illness meant I could not commit to time needed to run it and there are some wonderful online book clubs to join. This blog remained but things are now coming back full circle with the aim of raising awareness, and making a difference.

I have a rare form of dystonia, dopa responsive dystonia or DRD. With the odds of having it as 1 in 2 million I would rather have won the lottery. Like people with Parkinson’s disease my brain does not produce enough dopamine to move properly. I rely on drugs to keep me moving, walking, talking and writing. They help a lot but I am still wobbly, slow and resemble a sloth at times. My mobility scooter is my trusted friend.

Awareness of dystonia in all its forms from writer’s cramp, cervical dystonia which affects the neck to the rare ones is important because it helps speed up diagnosis, raises funds for research to find a cure, better treatments and support for people with the condition. There is a high rate of loneliness in people with dystonia due to embarrassment and fear of ridicule. Muscles can contract and contort in some unimaginable ways that are impossible to do voluntarily. I am always in awe at the postures I find myself in.  Tremors can be hard to watch and when the voice is affected it communication is hampered. There can be accusations of being drunk so it can be easier to hide under the duvet.

 

dystonia text box

DRD text

When my dystonia is on form my hands claw to resemble an evil witch, my body and arms twist to resemble a teapot and my voice goes from stutter to silent. It is not an attractive look.

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Dystonia 

I hate the condition but without it I doubt I would have started blogging, it has introduced me to some amazing people and gives me time to read.

Last year I met the wonderful Jennifer Gilmour, a domestic abuse advocate. She is making a big difference for others with her blog and book by stepping out of the shadows and saying this is me and this is my story. Maybe I can do similar with my wobbly twisted life – if it helps one person my job is done.

Jenn and me

Jennifer Gilmour and me

Love

More info on dystonia can be found here

Duvet Dwellers Books Name Change and Other News.

For those who have followed this blog for a while you may have noticed a change. With the arrival of Flamingo Paperie cards I have decided to evolve; same blog with the main focus being on my love of books but I will add a smattering of posts about life with dystonia and of course, my love of cards. It is now called From Under the Duvet – Books, Cards and a Wobbly Life. The web address will also change when I figure out how to transfer my domain without spending a fortune and will be fromundertheduvet.co.uk

Dystonia is the main reason I spend more time dwelling under the duvet reading than I should so without it this blog would never have started. Dystonia is a common neurological disorder yet it is hardly spoken about leading to under diagnosis, misdiagnosis and loneliness for those with the condition. Awareness is key to funding support and research so I want to do my bit to help. I was diagnosed with my rare form of dystonia – DRD dopa responsive dystonia – after I stumbled on a blog showing a video of a man with the same symptoms as me. Blogs can make a difference and if this helps one person, I will be happy.

Cards for Christmas

It is getting closer to Christmas so those wishing to buy any cards, gift wrap or accessories from Cards From Under the Duvet the last date for delivery before Christmas is 17th December. Delivery is free until 31st December and a donation from all sales will be made to The Dystonia Society.

Giveaway Winner

The winner of The Christmas Lights by Karen Swan is Lil_Mixie on Instragram.

Congratulations!

I hope you will continue to follow me on my new venture and make 2019 a good one.

Happy Reading!

Love

Hello December – Christmas, News, Offers, and Charity

Hello December! I love December especially the first day of the month; it time to open advent calendars — have you got yours yet? If not there are some lovely none chocolate options here. It is also the day to put the tree up and decorate. I always wake up with an excited feeling.

Now is the time for writing Christmas cards. Flamingo Paperie has many to choose from single ones and packs. This is one of my favourites.

Donkey card

Donkey in the Snow

And now they have released some new products to make people smile

New Releases

Pop up cards

Peek Show cards

These are special cards based on the Victorian Peep shows, they look wonderful and as soon as I get one I will show you but why not take a peek here?

Cards for Charity

The Flamingo Paperie Christmas cards raise money for the The Phoenix International Charity which is supporting Together for Short Lives, Macmillan Cancer Support and Alzheimer’s Society but this year I am also fundraising for Dystonia Society UK. This charity works hard to support people with the neurological condition, dystonia. 10% of sales made via cardsfromundertheduvet.co.uk over the festive season (ends 1st to 31st Dec) will be donated. This covers all products not just the Christmas stock. So why not have a browse and make a small charity smile?

Which brings me to tell you about the special offers.

Offers

Free postage

Postage is currently free no matter how small an order is which is ideal for last minute gift wrap or cards.  If you need a game for the dinner table, why not grab a chatterbox? Or if you need to keep guests young and old calm and busy a metre high colouring poster is perfect to harness the relaxation of colouring.

The Customer Club is now  open

Join the customer club today and you will receive updates on new products, special offers and free gifts.

For any orders 17th December is the last date for the delivery in time for Christmas.

Finally, here is Flo the Flamingo. Who needs an elf on a shelf when you have to get up to mischief. Follow her adventures on our Instagram page with #Flo_the_Flamingo

Introducing Flo the Flamingo

Time to get out of the duvet and help decorate the Christmas tree.

Time for the Christmas tree

Merry Christmas!

Love