Posted in Archive, June 2016

Making The Most Of This Life One Spoon At A Time

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My list of chronic conditions is an ever growing one; Dystonia, EDS Type 3, Non-Epileptic Seizures, Postural Hypotension and more! The list of hospital appointments is just as long. As I was diagnosed with each one I felt very much as if I were being forced to pause and take a step back in life. Almost as if I had no choice but to fail at achieving my goals. That may seem over dramatic, but it was a very real, very overwhelming emotion. Learning to accept life as spoonie was and still is a challenge. As I have mentioned before I have developed an attitude of watch me achieve everything you tell me that I won’t be able to. I shall achieve and aspire to all my dreams.

When I was exploring signing with my publisher I noticed that in their facts and questions page that they recommended if you were ill, waiting until you had recovered before going down this publishing path, because it is hard and a lot of work. Now obviously this is referring to recoverable conditions, hence why I skipped over it.  For my novel to be published I have to achieve 250 preorders, otherwise it won’t be able to go ahead (https://www.britainsnextbestseller.com/beta//books/?id=55). So for the next six weeks I have to put a lot of work into advertising and self-promotion via social media. Self-promotion may sound like an easy task but when one eye isn’t working and your body is dodgy anyway you tire easily. I know many of you know the feeling. This is when I adore Facebooks scheduled post function, it’s fantastic for when I need a quick break.

The next six weeks are going to be manic, and nerve wracking. However, it’s also exciting. I’m keeping my fingers crossed that I can achieve, despite everything , and manage to hit the 250 requirement! If you are a love of fantasy then you can order my debut novel here https://www.britainsnextbestseller.com/beta//books/?id=55

Author:

I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything

7 thoughts on “Making The Most Of This Life One Spoon At A Time

  1. wobblypip – UK – I was diagnosed with adult on-set dopa-responsive dystonia after I was also diagnosed with cerebral vasculitis a couple of years before. It is a rare type of dystonia usually seen in children and it is treated by Sinemet, a drug commonly used in Parkinson's disease. In adults, the symptoms can be very similar to Parkinson's disease. Cerebral vasculitis has a 1 in million chance of happening while DRD is 1 in 2 million. With those odds I would rather have won the lottery. I am lucky to have a wonderful husband, daughter and 4 gorgeous dogs. I enjoy freedom on Bazil ( my not so trusty scooter),Freecell, books, cups of tea and snuggly socks!
    wobblypip says:

    Good luck with it all. I hope it goes well! Reading your acheivement of finishing your book and following your dream has inspired me to write again so a big thank you. I doubt it will ever get published or read by anyone but it is fun getting there.

    1. dystoniaandme – Tring, Hertfordshire, – I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything
      dystoniaandme says:

      If you ever want me to read anything, let me know x

  2. Ordered a copy – obviously! Keep going Rebecca, keep achieving! x

  3. wobblypip – UK – I was diagnosed with adult on-set dopa-responsive dystonia after I was also diagnosed with cerebral vasculitis a couple of years before. It is a rare type of dystonia usually seen in children and it is treated by Sinemet, a drug commonly used in Parkinson's disease. In adults, the symptoms can be very similar to Parkinson's disease. Cerebral vasculitis has a 1 in million chance of happening while DRD is 1 in 2 million. With those odds I would rather have won the lottery. I am lucky to have a wonderful husband, daughter and 4 gorgeous dogs. I enjoy freedom on Bazil ( my not so trusty scooter),Freecell, books, cups of tea and snuggly socks!
    wobblypip says:

    Thank you so much

    1. dystoniaandme – Tring, Hertfordshire, – I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything
      dystoniaandme says:

      Thank You so much Jane xx

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