I have connected internationally with people either have or know someone with MS, so my MS journey has mixed with a lot of people. All the stories they can tell are different and unique, with several common threads. The disease is evolving as are the treatments and the stories people have can help other people who get diagnosed.

I’m 16 years into my story but I know others who are 30 or 40 years in. I’ve written my blog for five years and although it drifts from my original reason for setting it up, if it can help anybody in any small way then that is a bonus.

My life is certainly not over because of this condition but it has opened me up to so many stories and experiences that I’d like to put together in a book. I’d like to have more stories on my blog so that I can explore the benefits of medication, geographic location and mindset.

Does your access to medication have an impact on the ways your MS is controlled? Are you willing to fill in a questionnaire on an electronic survey? Would I be advised to set up a website that people can connect with? As I’m all too aware medication came too late for some of the people I know and their enthusiasm doesn’t enable their body to fight the more extreme forms of the disease. But their high-functioning brains still function and can tell stories of the adaptations they’ve made to ensure life goes forward.

Mindset is also a option to explore to establish whether having optimism helps. Being negative is undoubtedly a stumbling block as it takes you into depression and a downward spiral. It is harder to fight negativity in any mindset than it is to pull down an optimist or happy soul. I was starting to spiral downward but I’ve decided I must use something that enthuses me to get a positive result. I’ve seen or been approached by some people who are offering help with a couple of things and it’s allowed a couple of pieces of my jigsaw to slot into my not very regular picture.

MS is often called the snowflake disease because no two stories are the same, but often I’ve seen other people complaining or reaching out for help about something that I’ve either read about or experienced for myself. My cognition being what it is has meant that when people have asked when I am going to write my story, I’ve stumbled because the other stories are just as important. Can the wider MS community help me to make this a readable, if spiralling, story?

I was approached by someone who can make me a website and I read another post and this person wanted to publish a book about MS and I suddenly started to think about all the conversations I’ve ever had and I read their post, thinking my jigsaw piece is another part of the wider story. My little snowflake, my spiky but equally unique story, still has lots of the same facets of others and it is equally valid to educate and hopefully inspire some other contributors. All the stories (snowflakes) together make a snow ball or even a snowman. Let’s get the snowball rolling!