Stories for people affected by MS, by people affected by MS.
MS is different for everyone - we hope this blog reflects this.
When fatigue hits and my body is too tired to move, when I can't even string a thought together I usually reach for music. I love to focus on the lyrics. Music evokes such happy thoughts and memories, an invigorating euphoria gives me energy.
I can’t get up the stairs. It’s taken 20 years to get to this point, but I can no longer haul myself up the 12 steps to our bedroom. I’ve tried every way possible, but now, after two weeks of exhausting night-time attempts to reach the summit, I’ve had to concede defeat.
Last night, I was the headline item on the 6.30pm BBC South East News. After filming over the past few weeks at an award ceremony in Brussels where I had won the European Patient Advocacy Award, plus filming at the pub afternoons I organise etc, I really thought the item would be about that! Instead, it focused on the HIV drugs I took for 28 days and how the drugs very positively impacted on my MS.
When I first found out I had MS, it was all about me. How would I cope? What would my life be like from now on? It took me a long time to look up and realise my husband must have been thinking the same things.
However, he’s never said that, not ever. He just got on with our now-altered life with not a word of complaint, not even a sigh. He still does.
How we see ourselves
I've never been a big fan of mirrors. I used to actively avoid them when I was a teenager and young adult. I didn't like how I looked and I just didn't like myself enough. Things got a lot better in my late twenties and now, approaching my forties, I look at photos of twenty-year-old me and think I looked ok.
My body is buzzing.
This isn't street lingo for saying I look hot (I really don't). You'll know what I mean if your body buzzes, too. Well, I hope you don't but also I hope some of you do. To be honest, I know I'm not alone with this but sometimes it makes me feel lonely.
I’m watching the tennis. Andy Murray has a note to remind himself ‘Be kind to yourself’.
I’m sad that I can’t take part in my favourite sport anymore. My black belt taekwondo uniform hangs on the bedroom door, I put it there to remind me I am a warrior.
Last month I went to the European MS Platform Youth Congress in Poland.
Twenty younger people with MS from across Europe came together to talk about issues facing young people with MS. Issues like employment, advocacy, political campaigning and identity.