Fatigue has been ever-present for me since I was diagnosed with MS in 2004.
I am sure we have all heard and spoken with many MSers about their experiences of living with fatigue; hearing how debilitating it can be for some and about the ways people go about managing this symptom. As we know with MS, we all experience these things differently and fatigue can be particularly hard to define.
Working the same hours, performing to the same level, having a social life, spending time with your family, enjoying the same hobbies, making the most of the weekends, going on holiday… the list goes on. Despite this, I had a desire to react to my MS diagnosis by doing something positive. I don’t think I recognised it this way at the time, but when I look back it’s clear that I had needed something other than my diagnosis of MS, and the forced change of circumstance that came with it, to be a focus in my life. It may have taken a year or two to show, but I felt a strong compulsion for something positive to come out of my diagnosis.
I know I’m far from being the only one to have responded in this way. Over the years I have seen and heard from so many MSers who understand the feeling of wanting to do something – anything – positive to respond to their new situation. This reaction can take many forms: starting a blog, fundraising, running a marathon, volunteering, learning new skills, changing their career, starting a family, working harder or living healthier. However it manifests itself, after a transformative experience, your perspective shifts and the desire to get up and do something becomes strong.
I have always described this response as ‘MS Energy’ ⚡️ This term has always felt like an oxymoron to me – these words don’t usually live together – however it explained the strong desire to do something positive as a result of my diagnosis.
It wasn’t until a couple of years ago that I learnt psychologists recognise this positive reaction to life changing news as post-traumatic growth. Academic supporters of these ideas are keen to remind us that:
“Importantly, and this just can’t be emphasised enough, this does not mean that trauma is not also destructive and distressing. No one welcomes adversity. But the research evidence shows us that over time people can find benefits in their struggle with adversity.” (Prof Stephen Joseph, Ph.D, 2014)
MS Energy, or post-traumatic growth, is important to Shift.ms, as without it, we wouldn’t exist. It’s our past, present and future.
George was diagnosed with MS at the age of 22. Although MS is the most commonly diagnosed neurological condition in people in their 20s and 30s in the UK, he found it difficult to find other MSers of his age, even online. This frustration led him to set up a website, where MSers could meet and share experiences. This later became Shift.ms.
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