Talking about myasthenia on the radio

This week I’ve had two firsts happen to me – both of which were pretty exciting.

  1. on Tuesday evening I spoke to E Care Radio in America about living with myasthenia gravis
  2. on Wednesday, something I wrote was shortlisted for a short story competition

While the radio interview is the most relevant for this blog, the short story news is also related. I say that because it was writing this blog every day for a year that gave me the discipline to keep writing. Over the last two years I’ve been focusing more on creative writing and I’ve felt myself getting better (very slowly). Being shortlisted is a huge deal for me as it’s given me the confidence to keep bashing those words out.

Sadly the story isn’t about myasthenia… but you never know about the future.

Radio interview

I was approached about doing a radio show around a month ago by American digital station E Care Radio. As June is Myasthenia Awareness month, they wanted someone to speak about what it’s like to live with the condition and I didn’t feel like I could refuse as I’ve always said I’ll take any opportunity to raise awareness about MG. But once I agreed, I didn’t really think about it again until Tuesday morning…when I started to panic and doubt myself.

Who was I to speak about it? What did I know after a mere five years? Worse…would I be able to talk about the small amount that I do know when the nerves kicked in?

It was the fear of going totally blank that made me write down as much as I could think to say…none of which I looked at during the interview. Still, I think it helped calm me down and focus on what I did have to say. Which was quite a lot as it turns out…the interviewer could hardly get a word in.

I spoke about:

  • my tips for coping with MG
  • the best things that my loved ones have done to support
  • balancing work with MG

You can have a listen to the interview on the E Care Radio website.