Category Archives: Friends

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 post: The fear, the guilt and the irrational thoughts

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

This entry is about the period after diagnosis when the initial shock is starting to wear off and the fear, guilt and crazies start to creep in.

The Fear

The aggressive onset of Laurna’s initial symptoms made me fear for her and how much further her condition would deteriorate. Within a year, she had gone from having no symptoms to having regular tsosis, speech slurring, difficulty swallowing and weakened limbs. Google was a terrifying place with its doom and gloom articles and pictures. I have never been a particularly creative person but during that time, I dreamed up every scenario possible (and even those that were impossible and frankly ridiculous).

Selfishly, I feared that Laurna would want space after her diagnosis and maybe break up with me. As it turned out, Laurna did need space to figure things out but thankfully not in the way I was worried about. I had to learn to be patient and accept that I can’t ‘fix’ everything. Looking back, I have always really appreciated how patient Laurna was with me learning to be patient!

The Guilt

I am sure lots of partners can relate to this but put simply – ‘It Should Have Been Me’. I just felt guilty. I felt guilty for having fears. I felt guilty for feeling guilty. Laurna had Myasthenia and I couldn’t take it from her or even share some of the load. 

Laurna has always been so active and it seemed a particularly cruel thing for such an energetic person to get. It left me feeling very helpless for quite a while. Ultimately, this kind of thinking doesn’t help you and it doesn’t help your partner. I tried to focus on the things that I could do rather than what I couldn’t do and I found that helped a lot. 

The Irrational Thoughts

I know it’s different for everyone but my brain turned into a tumble drier of questions, thoughts, doubts, concerns, ideas and plans.

How did I feel about Laurna’s diagnosis? What did it mean for her? What did it mean for me? How much training would it take to be able to run every marathon ever organised and raise thousands of pounds for research? What impact would it have if we wanted to have children in the future? Was I going to give up my career to look after Laurna? On second thoughts, I could never give up my career because I may have to support the both of us? What if I retrained as a scientist and single handedly developed a cure – can’t be that hard, right? Am I really the right person to deal with this….

As you can see, I went from having a total crisis of confidence to being overly exuberant in wanting to defeat Myasthenia. There was also a lot of fear driven hypothesising and general concern for the future. I worried what people would think if I shared my doubts or concerns and so they remained largely unspoken. 

I now understand that it is important to engage with the unspoken and feel more comfortable allowing myself to feel whatever it is that I feel. Sometimes ‘unspoken’ thoughts are there to protect you – there can be a nugget of value in the middle of the madness.

Conclusion

I’m not really sure when the ‘fear, guilt and crazy’ stage ended. It all just phased out as we ‘got on with stuff’. The main thing I would take away is to be kind to yourself and to each other. It is a complex phase to navigate and requires patience, empathy and communication. It’s when your support team can really help too. 

The priority is the person with the Myasthenia who has much more to deal with than you in this moment. If you feel that this phase is getting in the way of your support or your relationship, there are lots of options available. Counselling is always a good place to start and the Myaware charity (amongst others) has great resources including a counsellor and support groups. Just remember you’re not alone.

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.

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 laurnacr@hotmail.co.uk

354/365 – The highs of blogging for a year

Me again – I know it’s starting to feel like I’m dragging out the last few posts of my year of blogging. That’s because I am. It’s now a year + a week but that’s ok. There’s a few reasons why and most of these are positive reasons. 

Reflecting on the impending 365th post, I wanted to capture the highs that have kept me writing. 

Highs:

  1. getting to know people with MG around the world betteras a people person, the most valuable takeaway from everything I do is normally related to people. I’ve met many new people, both online and in real life, this year through this blog and wider myasthenia networks. Every time the comment alert sounded on my phone during the year, I was thrilled. 
  • understanding my own MG better – charting how the myasthenia has made me feel over the last year has helped me better understand what affects the condition. Near the end now and I’ve never felt more comfortable with my MG or stronger.
  • allowing myself to be vulnerable – as I’ve stated many times in this blog, allowing myself to be vulnerable does not come naturally (I’m Scottish, of course it doesn’t). But this blog has helped me open up not just to my loved ones, but also work colleagues, the MG community and complete strangers. I’ve always believe in asking what’s the worst that can happen – in this case all I’ve had is a lot of love and support from readers.
  • achieving something  – the idea of writing a blog per day for a year was very ambitious. However, I read recently that even if you don’t succeed with big goals like this, in trying to, you’ve done a lot more than you would normally. I’ll only be setting big goals in future.
  • having a full year (+) documented – it’s the modern equivalent of a year book and once I’ve stopped writing I can go back over it to see what else I can learn.

While it’s not an easy thing to commit to, I would recommend it and support anyone else who thought they might like to reap some of the rewards I’ve discussed above. Will anyone take on the 2016 #365daysofmyasthenia mantle? 

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!


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. 

337/365 – Counting my blessings this Christmas

Finally…I’ve made it to the end of my year in London and I’m on the train home. After the usual stop-start crawl out of this sprawling chaotic capital, the train has found its flow and I’m hoping it’ll inspire some flow from me too. 

While we’re waiting for that, I can tell you that I’ve just had an overwhelming flood of gratitude. I’m grateful that I’m heading home to my family, to my friends and to a place where I can rest and think clearly. I’d be extremely lucky to have any of those things to come home to but to have them all makes me feel blessed. 
Nothing is more sacred than the people around you and for the first time in years I’ve written cards this Christmas. Proper cards – with two sides of thoughtful words and a request to hear news back. It can be so easy to let relationships slide in this busy world, but I plan to fight this in the new year and thought I’d start early.

On the dark days of MG it can be hard to think outside of its high walls, but take a moment to count your blessings this Christmas. 

323/365 – Christmas gifts for people with myasthenia

It’s the time of year to show your loved ones just how much you understand them, love them and appreciate them – in a gift. No pressure then. That’s why every year there are gift buyers tearing at each other – the amount those gifts are meant to communicate makes people crack up.

When it comes to buying gifts for people with myasthenia, here are my five tips. Feel free to share with your loved ones if any of this applies to you:

Tip 1: Clothes to relax in

People with MG can never have enough comfortable things to chill out in. Whether it’s a pair of pyjamas or a new piece of knitwear, your loved one may even start appreciating your gift by getting cosy in it on Christmas Day.

I’m pictured above in my mum’s early Christmas gift for me that fits with this category.

Tip 2: Entertain me

On low energy days, it can be great to have some items at home for entertainment so you don’t even have to think about going outside. Be it good speakers for music, a new box set to veg out in front of or even better a subscription to Netflix. If they are feeling more mobile at the moment, you can’t go wrong with a cinema gift card.

Tip 3: Things to look forward to

I’m a big fan of experiences for gifts and it’s always good to have something to look forward to during the gloom of January. Why not treat your loved one to a night away, tickets to see a favourite band or even a fun activity for a few months time. While it may be that when the time comes they aren’t strong enough for the event, giving the promise of shared fun is priceless in my book.

Tip 4: Make and do

As I wrote about previously, many people with MG take pleasure in crafting at home and there is now an incredible amount of different crafty gifts to get. I’d recommend checking out websites like Not On The High Street for this. 

Tip 5: A pamper session

Let’s be honest – most of us are bad at relaxation so being made to take time out to be completely indulgent is a fantastic way to say I love you and you deserve this hour of massage or this sumptuous face cream.

Any other gifts you’d recommend? Please do let me know.