182/365 – Halfway there

It feels bittersweet to tell you that today’s entry marks the halfway point of my 365 day blogging endurance test. Well almost – didn’t think it was fair to inflict an additional 182.5 entry on you all.  

Why bittersweet? As time has a habit of doing as you get older, the last six months have vanished far too quickly for my liking. Aside from still not being able to say ‘jam’ or ‘can I have this dance’ in Spanish, I’m also aware that before I know it this year, and this project, will be over. 

In today’s blog I’ve decided to reflect on my first six months, look at how to interact with the blog and outline draft plans for the next six months and for when the 365 days are over. I’m hoping that some of you will be up for getting involved in that.

Here are some thoughts from the midway point about writing this blog:

  • It has helped me better understand myasthenia.
  • It has helped me understand my own MG – what impacts it, what my limitations are and what my future looks like.
  • It has given me a space to express fears and emotions that have built up since my diagnosis.
  • It has helped me to cope on more difficult days
  • It has helped me feel closer with the MG international community with interesting comments from all over the world and readers from 65 countries so far. 
  • It has given me discipline to ask myself how I’m feeling everyday and adjust my lifestyle accordingly
  • It has given me discipline to write everyday which I hope I’ll be able to carry on

The next six months I’m hoping to be able to do more for the MG community but more on that later.

Here’s the stats on the first six months of the blog:

 

Interaction with the blog:

As you can see from the likes and comments above, readers have got involved and many have felt like they could comment. As it’s quite a personal blog, it might not always feel appropriate to comment but please do share your experiences. I’d love this to feel like a safe space for people with myasthenia can be open about their experiences. Thanks to all of you who have done that already – your bravery has spurred me on. 

Thanks to all the people who have emailed me over the last six months – every one of those emails has made this blogging malarkey worth something to me. Please don’t hesitate to get in touch if you haven’t done so yet and also to suggest topics.

At this point, my feedback page tells me 73% of my readers have myasthenia (if you haven’t filled it out yet, please do complete the poll). 

Alongside helping me understand and cope with my condition, I set up this blog with the aim of raising awareness, increasing the MG knowledge of the people who come across my blog and to raise issues that others with the condition may have felt but not expressed. Those aims set out to reach people with and without MG and I’m glad I’ve been able to do that so far.

Next six months

Looking back on the last six months today, I’ve decided to try the following things in the next six months (please let me know if there’s anything you’re not keen on/I’ve missed):

  • Aim to look at the latest MG treatment in different countries – would be useful if any of you Aussies or Americans have good links/contacts?
  • Discuss ongoing research in the UK and hopefully speak to a couple of researchers
  • Get publicity for the blog to help with raising awareness
  • Start a social media awareness campaign about MG to follow up from the #ihaveheardofmg.
  • Make navigating my posts easier with less categories and more links to relevant posts
  • Try to improve and vary my photos more

Once the year is over

This blog is already long enough – I’ll elaborate my plans for life post 365 days of myasthenia tomorrow. #sorrynotsorry and thanks for sticking with me. Here’s to an even better 182.5 days ahead.

2 thoughts on “182/365 – Halfway there”

  1. There’s a lab in Belgium where the cure of MG is. They’re currently on the first trial, we should work on trying to get funds to that cause, because big labs companies don’t see the business on curing a disease that’s makes them win so much money. The lab name is Curavac
    http://www.curavac.com/myasterix/

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