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.

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