Tag Archives: blogging

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

361/365 – The lows of blogging for a year

After publishing a post about the highs of blogging for a year, here is the other side of the story.

As I’ve already said its been a fantastic year and I would recommend it – particularly to those who want to understand their condition better. But keep the following in mind:

  • The time commitment

On good days, I could write a blog in under 30 minutes during my commute. But on other days it would eat into my lunch time and my evening. Not easy when you’re working hard so it’s important to have a clear purpose. This blog has taken me an hour and a half to write in bed on a Saturday morning – all the while, Elaine has been reading beside me. I’ve missed reading in 2015. 

Due to blogging, in 2015 I often had to lock myself away to finish a blog. My friends and Elaine joked on the Camino De Santiago that I was going to my blog studio whenever I went to the toilet.  It was often true – so that I wasn’t anti-socially writing on my phone I would slip off to write today’s post.

Saying this, at the end of the year I have a ‘finished product’ (almost) and a learning tool – so worth the sacrifice. This TED talk sums up much more eloquently than I could why the time spent capturing the ‘many tiny, beautiful, funny, tragic moments in your life’ is worthwhile.

  • Fear of running out of things to say

This is an obvious one and something I had thought about a great deal before beginning. There were moments during the year when I felt like I had said all that could possibly be said about MG – it would stress me out a little. But it never lasted too long thanks to the active community and the condition having an impact on many areas of life.

I found it helpful to keep a list of ideas close to stop thoughts as butterflies flying off – now that I’m wrapping up there is still a list with left over ideas.

  • Taking a step back and observing

Following on from my ‘blogging on the bog’, when writing regularly I’ve found I have to take a step back and try to observe. Similar to feelings experienced during my journalism days, this didn’t always leave me feeling comfortable, mainly when I could tell (or was told) that others weren’t pleased to be written about.

Thankfully the MG community, for the most part, has been really happy with the spotlight due to the potential to raise awareness.

  • Being ‘the expert’

I’ve only had MG for a couple of years, I don’t have a medical background, I’m lucky that my health has been relatively good and I’m not always the most respectful of my body. I’m no expert or role model when it comes to what’s right in terms of MG treatment or lifestyle. I’m learning from one day to the next what works and what doesn’t for living with this rare condition. But by writing this blog, I worry that I’m meant to be ‘an expert’ and have often been asked questions which confirm this fear. I even added a disclaimer on the blog.

Thankfully most people who have engaged with the blog have seemed to understand that it’s about my journey and they should seek medical advice before replicating anything I have tried.

  • Use of my images

One of the guys in the Myaware Young Generation private messaged me a while back about a website I had never heard of using one of my images. It is very misleading and it reads like I have written the page, which makes me feel really uncomfortable. I’ve now asked for Myaware’s support to get the image removed, as I’m wearing one of the charity’s t-shirts.

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? 

319/365 РMissing out on a spot as UK Blog Awards judge 

A few months ago I received an exciting private message on Twitter asking if I would consider being a judge for the UK Blog Awards 2016. As I’m not the kind of person who says no lightly, I replied ‘definitely, count me in’. The exposure that being a judge of The blog awards for the UK would give to myasthenia was very exciting – as was the prospect of doing the actual judging. What a cool way to spend a day, I thought. Sadly, it was not to be.

Part of the deal for being a judge was that I’d need to do a profile and create a video. While the idea of that was fine, one of the requirements for the profile was to talk about my job. As you know, I don’t write much about my job on here. Not because I can’t but because I would rather keep the two separate. Unfortunately this is why I had been chosen as a potential judge – not because my blog is a riveting read but because I’m a blogging civil servant. Sigh. 

On the plus side, while I’m not going to be a judge I can still enter the competition. And I intend to. There’s still a chance the UK Blog Awards 2016 can help raise awareness myasthenia.

296/365 – Blogging and myasthenia

We’re a talented lot and one of many things that people with myasthenia do well is blogging. There are a selection of fantastic blogs out there and I’m always coming across new ones – this week’s find was I’m not MYasthenia which the author describes ‘as a journey through the unknown’. It passionately captures all the other things that come before MG in the author’s life. One of the Myaware staff recently joked there should be a group on blogging and it made me think about what the benefits of blogging are. I’ve picked my favourite three things. 

Being able to put others at ease

When I decided to set up my 365 days of myasthenia blog at the end of the last year, I had come across a few good blogs describing what life is like with the condition. Some of those were about helping people cope with their feelings around this strange condition, while others were written to raise awareness and help others struggling to cope. Some combine all three in one as I aim this blog to do. However, I never came across these blogs when manically searching what the hell MG was all about  – they came later through support channels or specific hashtags on social media.

I wanted to create a blog that would pop up in those first few terrified searches and I’m glad to say that search engines are my main source of traffic now. I hope this means I’m reaching people when they need information on what it’s like to actually live with the condition. 

Heightened awareness about your condition

A lesson I learned in my university creative writing class was that when you’re writing about something your attention to detail is heightened. You are looking for the nuances and this give you a heightened sense of awareness about everything around you. It’s exactly the same in the case of blogging about myasthenia. I’ve noticed and learned a lot over the last year about my MG and the condition generally.

Small world

Gone are the days of only knowing the people in your local support group (if you have one near you). If you are involved in any kind of online community, you can speak directly to people all over the world with, and about, MG. This has been the case for my blog and it’s been enlightening hearing about different treatments and ideas from across the globe.