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

5 thoughts on “Goal of 2019 – shouting “This is me!”

  1. JenLGilmour says:

    It’s lovely to learn more about you, if you know what I mean. I think you could help many people, not just the one. Go ahead and I will be there to support you. Thank you for including me in this blog post and for all of your support. x

    Liked by 1 person

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