Posted in Archive, October 2013

Generosity, Kindness & Fundraising


Several weeks ago, I had the chance to meet some fantastic women at a fundraising event where I gave a talk about Dystonia and life with it. Two of the women – Beth and Sheila – decided to do some of their own fundraising to enable me to get a special bath lift with chest and pelvis harness.

On Saturday I went over to the last event to meet 12 amazing women, who I must say are impressively creative. The had raised an incredible amount of money which will mean I can now have baths and showers safely. In the summer when we went away thanks to a downstairs wheelchair accessible shower as I was able to shower for the first time in a year, and I have been really missing that since.

It is amazing the mental boost a shower or bath can give you. Obviously being clean gives you a boost, but the natural pain relief and relaxing element of hot water is such a fantastic way to get alternative relief to pain.  Currently I use a basin of water, some lovely lavender body wash and a sponge, and whilst I know that I am clean it is not the same cleanliness feeling that a bath or shower gives you. I am so excited to be able to bathe/shower again!

Once I figure out how to get the photos off my phone I shall upload some photos from Saturday. These women were so generous and I feel so privileged to have gotten the chance to meet them!  This is one of those moments when in a way I am glad I am ill as I would have never met such kind wonderful people otherwise.



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

3 thoughts on “Generosity, Kindness & Fundraising

  1. ShannanSenior – I am 22 years old and suffer from a neurological movement disorder called Dystonia and have been now for many years. I underwent DBS (deep brain stimulation) surgery in August 2013 to help relieve the debilitating symptoms caused from this disorder and enable me to live life to the full again :)! I have set up this blog to help raise awareness of this condition and to share my experiences with you throughout my journey.
    shannansenior says:

    I totally understand where u are coming from Rebecca.
    I like you had to make do with make-shift washing facilities, and had to use our living room as a bedroom for many years. Thankfully it was decided an extension would be built onto the house which saved all my problems.
    It has made such a difference.The whole process is a lot more comfortable and easier now and I hope it will be the same with you.
    lots of love huni love me x x x x x

  2. 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, I’m thrilled to hear your journey has been graced by such lovely women. We all need reminders along our way of the human kindness to be found when we open our own hearts. -Pamela-

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