Community blog

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Stories for people affected by MS, by people affected by MS. MS is different for everyone - we hope this blog reflects this.

Latest entries

My New Year's resolution

On New Year's Day 2015 I made a resolution; to exercise my brain daily. I downloaded the free Lumosity 'Brain Training Games App', and played five, two-minute long games every single day.

It's good to learn something new

Too tired to think

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.

Moving up in the world

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.

Headlines and HIV drugs

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.

Everybody is an athlete

Karine

A letter to my 18-year-old self

Dear Em,

Thank you to my husband

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.

Having a visible then invisible disability

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.

When everything is buzzing

AnnMy 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.

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