Posted in Archive, July 2014

Dystonia: 2 Years on

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Yesterday marked two years since I became ill with Dystonia and had my whole life turned upside down. I went from first year student midwife having the time of my life to struggling to do simple tasks like putting jeans on or getting around the house. Life has not been the same. I must admit that despite my best efforts I was rather emotional yesterday and found it extremely difficult to be cheery. However I must slap myself on the wrists and wipe away the tears because despite all that life has thrown at me I have not and shall not give up. Yesterday may have been the two-year mark, but today is the day I found out I have qualified as a Reflexologist and tomorrow is full of possibilities!

I could focus on the negatives, for example the many ambulance trips to hospital, but there is simply no point in that. Where would it get me? Over the last two years I have achieved so much, met the most inspiring people and had opportunities to do things I would not have been able to do if I were not ill. I may not be exactly where I thought I would be now, yet I have achieved more than I thought I would be able to whilst living with Dystonia. Life is unpredictable and is a bag full of mixed emotions, but what you are given is what you have to deal with. I do not see the point in letting it get me down. So I’m cherishing the memories I have, riding whatever dystonic spasm that gets thrown at me, and celebrating the wonderful opportunities that I am fortunate enough to have had and to be receiving!

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

11 thoughts on “Dystonia: 2 Years on

  1. That’s so awesome you Inspire me to keep going I have Torsion Dystonia and I’m only 19 years old. I would love to read more of your blogs

    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:

      Hi Kristina, Thank-you so much for you comment! I was 19 when I became ill and I know how hard it is. Keep fighting!! xx

  2. I know it has had to been a hard two years for you. I just hit my 3.5 year anniversary of the onset of my symptoms and almost at 3 since I had my first set of Botox shots. It’s such a long, hard road, but you aren’t alone! It is wonderful to read your positive post. I know not everyday is sunshine and roses, but being able to appreciate where you are in life is a huge blessing. It is something I struggle with–as a friend said the other day, it is so important to dream about tomorrow and not dream about yesterday. I find myself dreaming about the past and what could have been far too often.

    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:

      Knowing I am not alone is one of the things that keeps me going, as much as I wish none of us hard to cope with this condition, the fact we are all in the same boat enables us to help one another. Dreaming about the past is something I do alot to, it is easy and often painful, but the future is ours to mould! A thought that I find to be joyful xx

  3. I just hit my 3rd anniversary of being diagnosed and 3.5 years since my symptoms set in. It’s a long, hard road, but your optimism is so inspiring!

    Being able to live in the moment and enjoy where you are at in life is a huge blessing! It is something that I struggle with a lot. As a friend of mine said to me the other day, it is more important to dream about tomorrow than to dream about yesterday. It seems like chronic illnesses have made me think a lot more about how good it used to be (which it probably wasn’t as good as I remember it being) and what could have been. Your ability to dream for tomorrow is great! 🙂

  4. My daughter was 12 when she was diagnosed with dystonia, but by age 17 she went into remission. The disease is back again and came back with a vengeance at age 42. She has just been approved for a hover-round and it is being built as I write this. She has generalized dystonia and has had several full body contortions since January of this year. She has been in the wheelchair and has a hospital bed in her living room. Both bedrooms are upstairs and she can’t manage them anymore. She too fights depression, she was so active and independent, she has had to give up her drivers license and is adjusting to a life dependent on others for so many simple things that she used to take for granted. She is a single mom of a 17 year old. Life is hard, but she is coping as best she can. She has just recently started taking Baclofen and it has reduced the number of contortions and muscle spasms.

  5. My amazing eldest daughter you constantly astound me with your strength, your determination and your positivity! I love you very much and i am pretty
    sure that eventually we will send Benedict and Linda off on their own Happy ever After somewhere else eventually!!! love you xx

  6. Hi there,
    I was encouraged by your attitude toward life in this post, everybody faces challenges and its how you process and think about that that makes all the difference in the quality of life you have. Your thoughts are a powerful tool and you are a great example of that.
    I have worked in Australia in disability services for about 25 years. I am currently doing some study and I was asked to do a presentation in Dystonia, I had never heard of it before! I am pleased to see after a bit of research there seems to be a lot coming to the surface about this disorder. You have a great blog here and I’m sure you will bring courage and hope to others struggling in their journey. If its ok I’d like to share some of your words in my presentation.

    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:

      Hi Renee, Thank-you for your lovely comment. Of course that is ok, I am more than happy for you to do so! Best wishes, Rebecca xx

  7. Dystonia Muse – I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health care advocate, here to share my life-journey with the neurological movement disorder, Dystonia, which began with a "mis-step" when I was 8-1/2. Though Dystonia may have staged a coup over certain body parts, my heart and soul remain firmly my own. I invite you to join me on my quest to find the comedic lurking in this chronic epic!
    Dystonia Muse says:

    Rebecca, Your positive attitude through your struggles with Dystonia is more than heartwarming. I’ve so enjoyed getting to know you through our online activism and wish all the best for you as you continue along life’s journey. xxx -Pamela-

  8. Thank you for sharing your story Rebecca. I am 57 and was diagnosed about 6 months ago with functional movement disorder dystonia and SREDA. I was having these episodes 30-50 times a day. After a year of going to 10 different doctors, 4 different hospitals and spent over 2 weeks in 2 different hospitals. My husband and I left the last hospital feeling like we were thrown under the bus, no real help and not many answers. With my friends and family praying for relief a friend of mine shared an herbal coffee with me. Amazingly, I have been able to control the episodes I was having just by drinking it. I know that I am not cured, but if I can manage this condition by drinking these herbs, that is more than what the doctors could do. I wanted to share this with everyone I can, and I’m not sure how to reach people. My hope and prayer is that I might be able to help one person by sharing my story, as your story has helped me.
    If anyone would like to contact me feel free to email me. I don’t know the rules about sharing or recommending on blogs like this.
    Blessings~

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