Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘charity’

Beyond The Abyss

When I left university, I didn’t have much hope. I associated my midwifery training, the potential that it held, as a measure of success in life. Being unable to physically do the job anymore because my brain didn’t want to cooperate with my body left me feeling like a failure. For a while I didn’t particularly want to do anything but curl up on my bed and cry. My university was fabulous, they held my place moving it all the time for me, but I think we both knew I was too ill and in denial. I was grieving for a life that I wanted more than anything, I’d had a taste of it and I didn’t want to give up and let go.

After a period of feeling sorry for myself and being angry, I began to realise I had two quite simple choices. I could continue the way I was going, I could be bitter and resent myself for having an illness completely beyond my control. I could allow myself to continue in a downwards spiral, enabling the bleak abyss inside me to take over. Or I could snap out of it. I could pick myself up, slap a smile on my face and fight. I’d never gone down without a fight before why should now be any different?

In all honesty this choice is one I have had to remake several time over. Finally admitting to myself at the beginning of this year that the Dystonia being so generalised was going to prevent my Midwifery dreams was a difficult but positive step. For over two years I have fought in every way I can to continue having a normal life, I have studied, done charity work, attempting to find some way of finding even a glimpse of the fulfilment that I felt on my Midwifery course. Qualifying as a Reflexologist sparked something in me, I enjoy it thoroughly, but I am limited in my practice due to the Dystonia. My creative writing A Level though I love with a passion, reading and writing are two of my favourite activities. Studying them, well that’s just fun for me!

Last Friday (20 February) an article I wrote for Cosmopolitan went up on their website. For the first time in such a long time I felt a sense of achievement and fulfilment. I wanted to yell from the roof tops. I never thought I would see the day I would have an article on Cosmo’s website. I’m rather tempted to frame it. This experience has given me such a boost, it’s shown me that despite having Dystonia tuning life upside down and giving it a good old shake, I can still do whatever I put my mind do. It has been very empowering and a much-needed wake up call. Feeling full to the brim of nervousness, excitement, and joy; showed me that writing can give me every passion filled sense that Midwifery did, I just have to push myself. Dystonia can try to stop me but it won’t manage to.

If you want to check out my article please click on the following link http://www.cosmopolitan.co.uk/love-sex/sex/a33626/sex-questions-disabled-girls-are-tired-of-answering/

 

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Dystonia Awareness Week

From today to the 11th of May is Dystonia Awareness week! To celebrate it and help spread awareness I have taken apart in the Go Green for Dystonia campaign. I decided that I would do this in a similar way to last year and have dyed a section of my hair green for the week (luckily it will wash out quickly).

Photo: Green streak in my hair and wearing green for Dystonia awarness week.

I have a of couple awareness activities planned for this week besides being part of the Go Green for Dystonia Campaign. The first of my awareness activities is to do a blog every day, minus today’s entry I plan for each one to focus on a different aspect of Dystonia and how they can impact on day-to-day life. On Wednesday I am running an Awareness event at my college which I am really excited about, it’ll be a fantastic opportunity to educate lots of people on the condition and raise a bit of money for The Dystonia Society.

I have also signed up to Thunderclap, which is something all of you lovely readers can get involved with too! Thunderclap sends out an awareness message via your Facebook/twitter/tumbler (depending on what you choose) at 1:30pm on May 9th. It’s a great way to spread the word about Dystonia. Even Stephen Fry has signed up for it! If you would like to join in here is the link https://www.thunderclap.it/projects/9777-dystonia-awareness-week.

 

 

The Go Blue Movement

A little while ago a lovely woman called Rebecca Sharp who lives in America dyed a section of her blue to raise awareness for Dystonia (her father suffers from the condition). I thought this was a fantastic idea and we got talking. We have managed to make it into an international movement with many people agreeing to take part to raise awareness for Dystonia.

Dystonia Awareness week starts tomorrow (Saturday May 4th) and runs until Sunday 12th May. The idea is that during this week people either dye a section of their hair blue (you can even spray dye it) or clip a blue extension in, to show support for Dystonia and raise awareness. It is really easy to get involved with and a Facebook event page has been set up which you can easily join, and you can share photos of your blue hair in! The page also has links for those who would like to donate to either The Dystonia Society (UK) or the Dystonia Medical Research Foundation (USA). Both of these charities do fantastic work for Dystonia sufferers however they are in need of funds.

It’s an easy and fun way to raise funds and awareness and I urge you all to get involved!! Every person who joins in makes a huge difference. So join in with The Go Blue Movement! https://www.facebook.com/events/450399491712134/

Dystonia Awareness Week!

Dystonia Awareness Week is fast approaching, it runs from Saturday 4th May to Sunday 12th May. Last year my mum, step dad and I ran a 5k fun run up in London and raised over £700 for the Dystonia Society! However this year we had to rethink how we would raise awareness and funds for The Dystonia Society as now I am in a wheelchair the 5k fun run is out of the question.  After a quick search on The Dystonia Society website we decided that we would throw a tea party. There is also a slight competitive aspect to it, as everyone sends in the their tea party photos and The Dystonia Society judge the best.

I am also taking part in the ‘Go Blue Movement’. I am dying a section of my hair blue during awareness week to raise funds and awareness for Dystonia. The Go Blue Movement is an international movement, which started off in America! If you have not heard of it yet then I am sure over the next few days you shall hear more! You can easily take part in it by dying a section of your hair blue! If you do not want to use permanent dye, you can easily use a spray in, wash out dye!

If you would like to help me raise funds for The Dystonia Society then visit my just giving link! Every bit will make a huge difference for this small but amazing charity! http://www.justgiving.com/Rebecca-Moller1

 

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