Community: Real Life

M.E. media storm


Viks is 24 and from Surrey. She's bed-bound due to Myalgic Encephalopathy (M.E.), but works hard as co-founder of Post Pals, a website community for sick young people.
Entry: 10
Date: 24/04/2009

Viks is invited to speak on This Morning about her experience with M.E and how her recovery is going.

Viks on This Morning

Viks on This Morning

Last December the M.E. community woke up to the news that one sufferer of a very severe form of M.E. had sadly passed away. Her mother was arrested on suspicion of 'murder', but was later released. The media got hold of the story and the plight of M.E sufferers was suddenly thrust into the spotlight (although I don't know anyone with severe M.E. who can cope with bright light). It was great that there was lots of publicity, but a shame it took such a tragedy for people to take notice.

The next day I had an email from a national newspaper asking about a possible interview. After talking to them I received a call from an M.E. charity asking if I'd go on This Morning to talk about my on-going recovery. "Is it next week?" I said, but of course it wasn't - it was the next day! Thankfully, my mum's boss said it was OK for her to take me, so before I knew it we were being picked up and taken to the studios.

After arriving late, I was rushed straight into makeup then whisked out of my chair and onto the famous sofa - I looked the picture of health! The show was being presented by Ruth Langsford and Phillip Schofield, who were lovely - there was a very laid-back atmosphere in the studio. Ruth used to have post-viral fatigue syndrome (PVFS), which is a mild form of M.E (you can get it after a having a virus, although sufferers usually recover in less than six months). Because of her experience, she had a really good level of understanding of the illness, but said that she couldn't imagine what it's like to have full-blown M.E.

"Looking at me sitting on the sofa on the TV you wouldn't know that I'm usually in bed in a blacked-out room nearly every day."

I told them that M.E can be very deceptive: looking at me sitting on the sofa on the TV you wouldn't know that I'm usually in bed in a blacked-out room nearly every day. On an average day I would say I'm in bed for about 23.45 hours. It was completely different to the first live TV interview I did, I felt a lot more comfortable talking about my condition. You can see the interview here.

On Wednesdays I have physio for half an hour and go downstairs ­- although I sometimes stay for an hour. I also go down for special occasions, or when we have visitors. The amount of time I spend out of bed is increasing, but when I'm out in my wheelchair talking to people I sometimes feel like I'm faking it - not faking being ill, but faking being normal. After having a conversation they can carry on with their day, but I have to go straight home (normally lying down in the back of the car with sunglasses on), put my nighty on and crawl into bed, where I stay.

I had a good birthday and lead up to Christmas. On Christmas Eve my mum had a dinner party, which I went downstairs for.  I actually sat at the dinner table. Everyone said how wonderful it was to see me upright and dressed - I even got a quick cuddle with my neighbour's baby! I also saw my grandparents over the holidays - my nan is housebound so can't visit us.

I didn't eat Christmas dinner or open any presents because I had a cold. In the end, I ate my turkey on Boxing Day and opened my presents a few days later. After Christmas I spend three weeks mostly sleeping. I was feeling worse than normal and was throwing up a lot. I'm now back on the up and even did some unaided steps last week (they were less wobbly), so 2009 is looking positive so far!


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