Posted in Archive, January 2015

Dream A New Dream

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Today’s blog post shall be brief as I have been up to London for my Neurology appointment and am now very tired. My Neurologist was quiet apologetic and concerned that the last lot of injections had not worked, which left me with my normal extreme spasms. Apparently this sometimes does just happen for whatever reason, but to be on the safe side in the hope that this will work better, he upped the amount he was injecting everywhere. This has reassured me and helped to quell my fears that this batch of my injections may not work. I am now feeling decidedly more positive about it.

He confirmed the Hand Therapy’s diagnosis that the Dystonia is in my hand as well. However my symptoms in my hand are nowhere near as severe as the symptoms in my neck, jaw and eyes which is very positive. He stressed it was important not to aggravate it, I’m guessing this means I really need to learn how to walk without tripping over my own two feet…or my walking stick! This once again throws my Midwifery dreams out the window. I’m starting to realise that until a Neurologist hands me a pill and says this will cure you that I need to find a new dream. Now that’s not to say that I’m giving up on it, it’s more like putting it to bed for a long sleep until/if it becomes a realistic option again. I left university in the summer of 2012 on health grounds and for the last two and a half years I have built my Midwifery hopes and dreams up only to have them go up in flames around me more times than I can count. For my sanity I need to take a break from the emotional rollercoaster ride that that dream has taken me on. My year of training was the best experience of my life and I treasure it and for now that will do.

My reflexology career has now also been put on hold due to the hand Dystonia. Whilst my neurologist said he didn’t mind me doing the odd bit of Reflexology work, I have to be careful not to overdo it. I have always loved reading and writing. I can get lost in books for hours on end and will happily write all day. There are plenty of degrees out there in Creative Writing and Publishing, perhaps I shall discover a new dream down that road. For now though I must put my love of reading into action and brush up on information on another genetic condition I have been diagnosed with. I’ll fill you in on this new diagnosis next time.

 

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

6 thoughts on “Dream A New Dream

  1. So sorry that your suffering with dystonia, i suffered with it for about 18 months and still have flairs every now and then, do you know the cause of your dystonia?

    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:

      My neuro thinks it’s caused by damage done to the brain by Chronic Neurological Lyme Disease. I’m sorry to hear you also have this illness!x

  2. 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:

    I did a children’s literature course with the OU and it was great! They also helped out with equipment to make writing assignments easier. Good luck in whatever you do and dreams you discover 🙂

    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! x

  3. Beautiful Rebecca. You are so inspirational and strong. And absolutely destined for great things. Xx

    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!Love you mum xxx

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