Category Archives: Family

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.

Guest post: summing up

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

Thankfully, I have come to the end of my short career as a ‘blogger’. Over the last few weeks, I have tried to share some personal perspectives on supporting someone with Myasthenia. I hope you found them even slightly useful.

Extracting some themes from the jumble of words in my blogs, I will leave you with the following summary of my ramblings

1) having a team is important – yours can be made up of anyone who has a positive influence in your life.

2) Communicate with your team – tell them what you need and don’t feel guilty or awkward about it.

3) Try to put your pride to one side – by letting people help you, it will indirectly help your partner.

4) Know your boundaries – to help you be a supporter, there are some things you may need in return from your partner e.g. communication, being involved in decisions and compromise.

5) Be patient – you can’t fix everything.

6) Google is a horrible place – stick to the facts and avoid the ‘but what ifs…’ where you can.

7) Guilt is not constructive – try and focus on all the good things you can and have been doing to support rather than what you can’t do.

8) Unspoken thoughts can be there to protect you – there is often a nugget of value in the middle of the madness:

9) Be kind to yourself and be kind to each other – you’re both already doing great.

My final point is the most important of all:

10) Give a big two fingers to Myasthenia – When Laurna got diagnosed, I quickly learned that there was a time for talking. Retrospect has shown how important it was that there was also a time for not talking; just being us, having fun and enjoying the life we had chosen together. 

When I look at Laurna I don’t see someone with Myasthenia – I see Laurna. A person who is passionate, smart and kind. A person who I can’t spend enough time with. I completely refuse to let Myasthenia change that – there are so many more interesting and fun things about Laurna and she will never be defined by her condition in my eyes.

So there you have it. If you have made it this far, thanks for reading. I am really looking forward to hearing about other people’s experiences.

 Like Laurna, I have much to learn and more bridges to cross. I always appreciate the support and perspective from the Myasthenia community and can’t wait to read the next instalments. 

Guest blog: Go team

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

Teamwork: Less Me and More We

I mentioned this already but Myasthenia really is a team effort. Luckily, Laurna has a great team to support her which is made up of her amazing family, friends, colleagues and of course, the MG community. When supporting someone with Myasthenia, it is important to also rally a team of your own

My team – who are they?

Anyone and everyone. For me, I have the greatest team to support me made up of people who don’t even realise they are on a team (surprise!)

I consider anybody who has ever asked “How’s Laurna?” or agreed to come for a distraction pint with me as a member of my team. I am even more grateful for the people who ask “How are you?” when enquiring about Laurna’s Myasthenia. All these people give me the opportunity to talk if I need to (I don’t want to talk about it…but…) or distract me when I can’t talk about it anymore.

At Myaware meetings, I’ve been  encouraged to hear stories from people who have recruited their children onto their team to help around the house, neighbours to give those children lifts to school or family to step in and provide some respite for partners who maybe just need a personal night to themselves. Every contribution is one less thing for you to do which can really make a difference. Despite how much you might try, you can’t be everywhere and do everything. And it’s ok not to want to be either.

Sounds great but what do I need to do?

Communicate. Like any good team, you can’t expect to win a Grandslam without an understanding of what is required and some practise (Ireland are just giving the other rugby 6 nation teams a sporting chance this year!).

 In the beginning, I felt guilty about talking too much, taking up too much time, awkward about asking for favours. Now, I am much better about telling those around me what I need and letting them get involved. Maybe I have just been lucky but my experience has been that people want to help and like to feel involved. 

I am generally quite a proud person but I had to realise that by letting people help me, I was indirectly helping Laurna. My friends are great and have been there to confide in but also to provide light relief in the form of ‘girls nights’ and weekends away. When working overseas, I have often asked them to discretely check in on Laurna to make sure she is ok. Laurna now pretends not to raise a suspicious eyebrow at their ‘out of the blue’ texts 

So don’t be afraid to ask for help and be thankful for the small gestures which make a difference. When it comes to your loved one’s Myasthenia, it’s important to look after you first so that you can look after them.

Myasthenia and moving home

I know I’ve promised to hand this blog over to the MG community and I’ve had some posts already so thanks for those. They will be posted shortly. But it seemed wrong to let such a big life event pass without writing about it and the impact it has had on my MG.

Moving house is stressful, dull and time consuming. It’s also exhausting and that spells trouble for people with conditions like myasthenia. 

I’ve written some tips below to help limit the fatigue followed by my own experience of moving on this occasion.

Tips for moving with MG

  1. Do it gradually – try a room if you’re having a good day or just a box on a bad day. Doing it all at once will leave you exhausted.
  2. Ask for help – friends, family or even neighbours are normally more than happy to lend a hand. 
  3. If you don’t have people to help, it might be worth thinking about whether you can afford a moving company to do the work.
  4. Take what you can in bags rather than boxes -especially if you can get help putting a bag on, it’s a lot less strenuous than lugging boxes.
  5. If you can, do the actual move over a few days – it’s physically exhausting and you’re better to get rest inbetween.
  6. Pack less in your bags/boxes – it’s easier to do a couple of additional runs with lighter loads.

Moving city 

This time everything felt hard – from the clear out, with Shelter charity shop receiving 15 bags of ‘goodies’ and our friends having iron boards and roasting tins forced upon them, to the actual move, where we carted Elaine’s stuff back to Dublin by car on the ferry (6 hour journey each way) and mine back to Edinburgh by car (6 hour drive). I’m not one to shy away from hard work – in fact I’ve always quite enjoyed the physicality of the actual move – but the effort of doing it all in just over a week has drained me. 

The things that made moving exhausting for me:

  • The first thing that surprised me was I felt exhausted from driving on motorways. I’ve always found driving relaxing, but having to hold my right foot over the pedal for a long period was difficult.
  • The 6am starts several days in a row left me exhausted 
  • Clearing the stuff we didn’t want and the flat in general – probably the biggest job of the move and seemed to never end

A week after heading back from Dublin, I’ve had to up my dose of steroids for the first time in 6 months. Why? Because even though I’ve been getting long sleeps and taking it pretty easy since, I have the heavy limbs, my eye is down again, for the first time since Christmas, and my swallowing has been impacted.

364/365 – What’s next for 365 days of myasthenia

And so, the end is near and so I face the final curtain (the longest farewell ever, right). Before I stop blogging in the way you’re familiar with, I want to remind you of what I’m hoping to do moving forward and how you can get involved.

After a year of writing about me and my experiences coping and battling with myasthenia gravis, I want to hand this blog over to you. I had originally thought we could do a week of other people blogging but that’s a lot of commitment. So instead I’ll be looking for guest posts. I’ll continue to post too – mainly when I have something interesting to share.

Calling all aspiring bloggers

Whether you have MG, are the loved one of someone with MG (be it father, daughter, partner, friend, employee…) or have only recently heard of MG, I’m looking for guest blogs about what the condition means to you and how you deal with it. 

The rules

  • Subject: It can be a guest blog about one day/week/year of life with MG, the story of your/your loved ones’ diagnosis or about a specific part of your life: I’m very open to ideas although the one thing I’ll be reluctant to publish is a piece that just moans
  • Word length: I’ll be looking forj blogs to be between 300-800 words
  • Editing: I reserve the right to edit blogs down to a readable size and for grammar/spelling purposes. I’ll also edit blogs to make them more digestible if I receive a giant block of text 
  • Pictures: please feel free to send photos over to insert into the blog being clear about where you think they would be best placed. As you know, a picture can be better than 1,000 words sometimes

Are you ready to blog?

If you’ve read the above and think you’re ready to submit/discuss a blog you’d like to write, just email me at

353/365 – Researching the timeline of Myasthenia

While researching a timeline of myasthenia Gravis that I’m putting together, I came across an interesting quote about it from the start of the 20th century.

Until the 1930s, the treatment for MG was described as a ‘source of disencouragement to the patient and a cause of nightmare to the physician’.

Disencouragement wasn’t all it said – one of the forms of treatment was also avoiding excitement. Although at that time, myasthenia wasn’t necessarily a death sentence, avoiding excitement sounds like one to me. People confined to dark rooms for years on end – worried about laughing too much or even forgetting what laughter feels like. It made me incredibly grateful to be alive in this day and age. 

I know the reality for some people now can be like this in fluctuations – it can feel like all the things that bring enjoyment make the MG worse. But, with modern medication and research always trying to improve that, most people I’ve met with MG are able to build a life where enjoyment is not ruled out. So we are lucky. 

348/365 – New Year’s resolutions 

It’s that time of year where the motivational quotes and thanks for the year that’s been are covering Facebook. If there’s a time for looking backwards it’s today, but it’s also my favourite time to think about what I want to be different in the New Year. 

So my resolutions for 2016 are:

1. To be better at keeping in touch with all of my loved ones

With a few funerals at the end of 2015 for people that I hadn’t spoken to enough lately, it made me determined to get better at keeping in touch. I started this with writing Christmas cards but not as many as I would have liked. 2016 is going to be better. 

2. Keep working hard to spread awareness of myasthenia

It’s been a good year for myasthenia with it making an appearance on TV show Empire and #ihaveheardofMG reaching far and wide on social media.

At the end of 2015, I worked with the MG community to create this Faces of Myasthenia video and it has been viewed more than 500 times. I’m going to do a lot more to promote this and try to get people to share their own images/videos with the hashtag #FacesofMyasthenia. 

I’m sure there will be other opportunities to raise awareness and I’m going to keep trying to find them.

3. Try to be healthier all year long

I’ve had bursts of really looking after myself and bursts of not caring.  I hope to be more consistent this year with my eating, exercising and sleep. 

While there are lots of other things I want to do in 2016, that’s enough resolutions to keep me going.

Happy New Year everybody!

341/365 – Myasthenia and looking after kids

The parents out there are going to give a massive sigh at this one but I’m exhausted tonight after six hours of non-stop entertaining my little cousins. I love all four of them to pieces, but seriously I’m ready to sleep for a week. It’s made me unsure about how I’m going to find the energy as a parent. 

I loved helping my little cousin with her dinner, then we started with table tennis. In between shots I was blowing up and tying balloons, helping set up pool tables and taking turns at Jenga. I’ve never felt like a better multi-tasker – seriously how do parents of more than one child cope with only one pair of hands? And anytime I needed to take a break for you know the toilet or a cup of tea, the little darlings would be waiting beside me ready to force the bat/pool queue etc back in my hand. 

I love being able to focus my complete attention on them particularly when I’m feeling strong. But today I was thinking about how parents cope on symptomatic days and I’ve got to take my hats off to all the parents with myasthenia out there who find the right energy each day. As I said, you’ll be sighing at how pathetic this sounds but I have a newfound respect for the strength you are able to find for your children every day. 

340/365 – Christmas Day shenanigans 

Well that’s Christmas Day over for another year but what a memorable day and night my family had. Once again, it reminded me of how lucky I am to be surrounded by such a wonderful bunch of eccentrics.

 After our usual quiet Christmas morning of present opening, operation ‘get the house and dinner prepared’ took us almost right up to the family arriving. I had just enough time to pop around to my former childminder’s house with a present – unfortunately I arrived as they had sat down for dinner. Great timing as always. Still, I was grateful later that I had made the craply timed visit. 

After a gorgeous dinner, present opening and lots of catching up, we started on the games. That’s when my childminder and her husband arrived at the door and the party got started with a sing-song. Most of us did a spontaneous turn and many a cheers was had. Call me oldfashioned, but I think that’s exactly what Christmas should be about. 

339/365 – Not merry Christmas Eve

As my family did our Christmas Eve rituals, I was thinking how I can hardly believe it’s been 365 days since last Christmas. Thankfully there is a world of difference between how I’m feeling today and last year. 

Then I was still recovering from my thymectomy, was on anti-biotics for a chest infection and, as a result of both and more, I was exhausted. As a result of that, I looked and felt terrible.

Today, I started with a run despite the howling rain. After our cinema trip to see Star Wars: The Force Awakens, we had a wet and windy stroll around the Christmas markets. I’ve added a picture below as, despite the chill we all got, it’s the place that captures the spirit of Christmas for me.  

To warm up we headed to our usual Christmas Eve spot, where I’m pictured above, for some dinner. Because I’m feeling better, it’s tempting to have a few drinks to celebrate but I’m determined to be in the best possible form tomorrow. So I’ll have a toast at the bells and then to bed early.

I hope you’ve had a strong and happy Christmas Eve and all the best for tomorrow.