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.

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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.

 

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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

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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