Sunday, 1 September 2013

Social media support

When I was first diagnosed I trawled the Internet to find people like me. I wanted to hear about young women who had lived a full and happy life despite the trials and tribulations of Multiple Sclerosis.
But I found it incredibly difficult to find an honest account of 'real' life following a diagnosis. It was really frustrating, especially as a journalist who spends most of my working life telling the tales of others. It was this lack of proper stories that led me to start this blog.
In the years since, Twitter and Facebook have become a part of everyday life and thankfully social media has introduced me to many others like me.
There have been times when I have felt down; demoralised - and all it has taken is a short tweet and within minutes there is support from a whole host of my followers.
Not just those with MS, but people who have interacted with me because of my children, or because of my work.
Their responses and words have comforted, reassured and encouraged me at various points, and for that I am always thankful.
To some extent I would like to think that these virtual 'friends' are also people with whom I would meet for a coffee and a chat if they lived nearby.
There are too many to name but the list is fairly extensive.
However, today I want to mention one in particular. She tweets under the name @innocentcharmer. But her real name is Kara. She is married to Ashley and they have three beautiful children, Grayson, Addison and Deacon.
We connected firstly because of our kids. Addison is a few months younger than Charlotte and Deacon was born just a week before Lucy.
However, we also have MS in common because her late grandfather had the condition and passed away when Kara was just two months old.
Kara is an incredibly inspirational woman. Her eldest son Grayson has a myriad of health problems yet no medical team can say exactly what it is he has. In essence he has a Syndrome Without A Name (SWAN). 
Young people like Grayson are few and far between; he is essentially one in a million.
As a result Kara & her husband battle on a daily basis to get access to the support and equipment he so desperately needs.
Last year they decided to raise funds themselves for equipment he needs, as well as the charity SWAN UK, by holding a huge fun day in his name. 
It has now become an annual event. But this year Kara touched my heart when she got in touch to say that this year's fun day would also have MS Society UK as a recipient of some of the monies raised, despite the fact that they desperately need to purchase Grayson a walker which the NHS will not provide for.
She has told me since that she relayed my story and circumstances to those who came to support Grayson, and many of them sent messages of support.
Tomorrow, on Facebook, Kara is hosting an auction to raise further funds for this year's pot - and it would be amazing if you would take five minutes, look at the prizes and if something takes your fancy, place a bid.
Naturally the highest bidder wins and every penny is going to brilliant causes.
Stories like hers, and the online support I get from people like Kara, are what make the new world of social media so fantastic.

If you want to connect with me on Twitter please pop over and say hello - @catdoran


  1. Just found your blog via Instagram. I'll be reading. Kara us a lovely lady. My mum has MS, diagnosed 10 years ago. She's still battling on, keeping positive. I hate to see the changes & restraints it has placed apon her but she remains as strong as ever. X

    1. Thanks for your comment Alex, and for reading. Maternity leave has hampered my writing unfortunately but hopefully as Lucy gets older I'll have more time to update! Great to hear your mum is staying positive, it's a tough illness sometimes but I believe on focussing on the good too. Send her my best wishes xx