Remember what it was like to be diagnosed with MS?
Neuro: You have MS haven’t you?! You’ve got your aunt’s disease.
Me: [In an impossibly quiet voice] What?!
Neuro: Don’t you just want to say, ‘Oh, Sh*t?!’
So, this is the (slightly condensed) conversation I had with my Neuro on the day I got my diagnosis. Not much was coming out of my mouth but a hell of a lot of stuff was going on inside my brain. First thought? Oh my god, this isn’t going away. I’m not going to be the fit and active grown-up I’ve always set out to be. Everything is going to get worse. How has this happened to me? I’m so young and fit and HEALTHY!!
Apparently the first thing I said to my mum, who was with me, was ‘Does this mean I’m going to die young?’ I don’t even remember thinking this – just one of the gazillion thoughts that must have whizzed through my brain and got lost in the confused and devastating muddle that I found myself in.
Everywhere I went, with every wobbly step I took my mind played a constant rhythmic thought over and over again, “I’ve got MS, I’ve got MS, I’ve got MS”. There was no shaking it for days, it seemed like it would never leave me, just like this STUPID condition would never leave me.
The following few months brought a huge mix of emotions – Fear, grief, sadness, resignation, optimism, ambition, determination, anger, bitterness, resentment, loneliness … you name it, I probably felt it.
One of the hardest things I remember trying to come to terms with was the lack of interest and support from some of my closest friends. I know now that they didn’t mean anything by it, but my goodness how I needed those little messages of support and acknowledgement of what I was going through. Perhaps surprisingly it was my work colleagues who really shined through – I can never thank them enough for making me feel loved and supported and for taking me seriously. They had seen me at my worst, seen me walking into walls and struggling around on crutches. They, along with my ever amazing family, made and continue to make my life a better, easier and happier one.
Perhaps the best thing I did, and the one thing I would recommend to anyone out there who finds themselves in this ghastly situation, is to seek out support from other MSer’s. About 6 months after diagnosis my nurse got me in touch with a wonderfully optimistic and life-loving woman who proved to me that life after an MS diagnosis was possible – she had 3 whole children (!) and was not letting MS get in her way.
I also went along to the MS Therapy Centre for some ‘Getting to Grips’ sessions where I met Jody, who has become a true friend. And now I am lucky enough to add my friends at Mustard Soup and Many Scars (2 Norfolk based MS support groups) to the mix. It’s been a crazy 7 years and I have achieved way more than I thought I ever could after I got the news on that fateful day in 2010. There is so so so much more to say, but I’ll save it for another time. I’ll just leave you with this, I’m currently expecting child number 3 of my very own, so things can’t have been all that bad!
First published 30 January 2017