Tag Archives: support network

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.

166/365 – Reaching out

As I mentioned in my previous blog, last night I attended the Young Myaware group drinks. It takes courage to come along to these get togethers and it is always lovely to meet others with myasthenia. 

At the events I have attended over the last two years (nearly) there has been a diverse group of people who live all over the south east and who all have a story or two to tell. These events are great for raising questions, feeling part of a community and sharing tips about coping. But also it’s good to laugh and there’s never a shortage of that.

Normally these events make me feel like I’ve just begun my journey with myasthenia, but last night there were two new people who came along for their first meeting. It was lovely to be there to see them reaching out for support. If I could give one piece of advice to everyone with myasthenia it would be reach out. Being able to talk to someone who understands is a rare gift – whether you have a strong support network or not, there is a ready made one with this group.

If you don’t live in or near London, fear not; the Myaware young person’s is going on tour around the UK at the end of 2015/start of 2016. More information on this will be released as locations are confirmed. 

64/365 – Family reflections

This weekend I headed back up to Edinburgh to celebrate my dad’s 70th birthday. It was the first time I had seen some of my family since Christmas and so there was lots of catching up to do.

I got to spend time with my big cousin and her husband, which rarely happens outside of Christmas. We ended up my brother and I, my cousin and her hubby nursing a cocktail in one of Edinburgh’s fancy hotels. While we were sipping the delicious creations, my cousin’s husband raised the fact that my eyes were looking a lot better since when I had seen him last at Christmas. He mentioned that for the first time since my diagnosis they had looked normal but he hadn’t known whether to say or not. 

I’m sure this is an experience that most people with myasthenia have regularly. The fluctuation is difficult to understand for people who care and just want to see you looking healthy again. I could have explained that the next morning they probably won’t look normal again because of the late night and the cocktail. But he got to see that for himself. 

So how did I respond? I said I really don’t mind talking about it, which I don’t, and that he never needs to feel like he can’t comment. A contradiction from the above? I don’t believe so. I think it’s more dangerous for people to feel that they can’t speak about it with me, because then it might feel like I can’t speak about how I’m feeling with them too. Having people who care enough to ask how you’re really doing can be the difference between feeling alone or supported. 

I also had an interesting chat with the birthday boy yesterday about his impending big day. When discussing the reasons to celebrate reaching his 70th year and being healthy enough to golf every day, he mentioned it was a lot to do with luck. While we both agreed that it had a bit to do with luck, the fact that I only remember him drinking a handful of times when I was growing up, having an active job when he was young, that he’s never smoked, that he has always been incredibly active and was a war baby brought up on healthy small portions all contribute to his longevity. As one of my friends said, he’ll probably outlast us all. 

I think the luck comment has more to do with my MG and my brother’s diabetes, but we were brought up in different times. I don’t think my dad will ever stop blaming himself for our conditions and that is a real shame. The things that he has introduced into my life – particularly the love of exercise, the mental strength attached to that love, and the outdoors – have actually made it a lot easier for me to cope with the MG diagnosis. For that, along with the fact that he’s one of the most unique, hilarious and caring people in my life, I will be forever grateful.