Many people with MS find support through the online community. There is an ever-growing range of social media groups, blogs, forums and discussion groups where people with MS can share experiences, ask questions, and connect with other people who understand what they are going through. Emily Thurston writes The Wibbly Dinosaur blog. Here she tells us how blogging has helped her deal with “all the craziness that MS throws at you”.
On Thursday, 9 September 2010 my life took a rather unexpected turn. “You have MS.” The words were spoken by my neurologist, a somewhat pompous doctor-man with a dry, old school manner that would take me several months to grow accustomed to. Around 130,000 people living in the UK today have been on the receiving end of this perceived ‘diagnosis of doom’; a club that I didn’t particularly want to join but one that I have gradually learnt to embrace and at times even be grateful for.
You see, the diagnosis was the kick up the bum I needed to get my priorities straight. With my whole life being turned upside down I had to come to terms with the ‘new me’. But MS didn’t mean the end of all my dreams as I had feared, on the contrary, it was the start of all the best things that have so far happened to me. I suddenly found myself with renewed ambition and, despite being scared, I was also excited. Shortly after I was diagnosed I found myself planning a wedding and dreaming about having children, which had previously not figured much on my agenda. I am now 36 and married with three kids and two cats. Life is exciting, challenging and beautiful.
Writing provides a wonderfully therapeutic way of dealing with all the craziness that MS throws at you and I’d recommend it to anyone
During my first year of living with MS I began meeting others who had found themselves in the same wobbly boat - I finally had friends who ‘got’ what it was like to have an electric shock surge through your body when you lowered your head, and who laughed knowingly each time I stumbled like a drunkard; I wasn’t alone, there were others just like me! Finding people with whom I could relate was one of the best things to happen and I soon realised that there were a heck of a lot of people out there who were dealing with this alone. And so I began writing upbeat bits and bobs on a social media page for a local MS support group. I wrote candidly about situations I found myself in thanks to MS and people were incredibly responsive to it. It became clear that I had a lot to say on the subject, which led me to launch my own blog, thewibblydinosaur.com. My aim is to promote a positive and relatable message for people with MS and those close to them.
Writing provides a wonderfully therapeutic way of dealing with all the craziness that MS throws at you and I’d recommend it to anyone. Since starting my blog I have seen my own attitude to the condition change for the better as I strive to see the positive side of potentially traumatic experiences such as wetting myself in public or undergoing an invasive bladder pressure test. Without dismissing the genuine distress that these incidents can cause I try to find a balance in my writing. My posts have so far covered topics as varied as going through the diagnosis process, having an MRI, starting treatments and coping with depression to comparing myself to He-Man, dealing with the daily struggles of doing the school run, using a dishwasher or attempting to change a bed sheet. Indeed, it is these more mundane activities that are the most fun to write about and hopefully to read!
There is no denying that part of the joy in sharing my story is the feedback I get from people who read it. It is so awesome to know that I have perhaps helped others deal with their own MS in some way and to receive messages from people sharing their own stories with me. I feel really excited about my blog, I’m excited about the opportunities that are opening up because of it and, more than anything, I can’t wait to reach out and engage with more people who find themselves in the same painful pickle as me.