Blog: puffins&penguins&me: "This Is How We Become The #MillionsMissing – A New Project For 2019"

[Andy]

I have decided to undertake a project this year. I wanted to see just how isolated I have become since having ME, so, for the whole of 2019 I will be keeping a record of the time I spend in the company or vicinity of other people.

Why?

As well as satisfying my own curiosity, my aim with this project is to help others understand the extent of the isolation I live in. I want to help people understand just how severely ME limits my ability to interact, communicate with and be around people. I’ve explained before that ME is defined by a pathological inability to produce energy on demand at a cellular level. Unlike the common misconception, ME is not an illness that causes me to feel tired, it’s an illness that limits my energy production. I think most of the people I know can understand how this affects my ability to undertake various physical and cognitive activities, but I’m not sure they know just how severely it affects my ability to simply be around people. I have gone into this before, especially with my last post, Post Thirty Two. Some Things I’d Like My Visitors To Be Mindful Of., in which I explained how carefully I have to plan and manage the time that I spend around people. I think this post and this project as a whole tie in well with Post Thirty Two, but with this project, I’ll actually be able to show them just how drastically my reality has changed due to having ME.

https://puffinsandpenguins.wordpres...e-the-millionsmissing-a-new-project-for-2019/

 

[Esther12]

Best wishes to everyone out there who is living with health problems without having people close to them to lean on. Isolation can be such a strain for people in itself.

 

[Phoebe]

https://puffinsandpenguins.wordpres...e-the-millionsmissing-a-new-project-for-2019/

Thanks for sharing.

 

[Hutan]

It's a really interesting idea, thanks for doing it and blogging about it.

I know the aim here isn't a scientific study. But formal time study projects could be worthwhile too in helping people understand the impact of the illness and accurately stratifying severity. e.g. done over a week or a month with healthy controls and perhaps people with MS or other more socially accepted illnesses for comparison. If done with a group of young people, it might provide an interesting counterpoint to Crawley's definitions of severity levels.

Perhaps those researchers who can't do biochemistry or exercise physiology might like to think about doing a time study project rather than something waffly involving shopping bags?

In the comments under the blog there is a discussion about phone calls as a social activity. There's social media too. I know this forum accounts for a large part of my social interaction, with things like Skype messaging, texts and email also contributing to my sense of connectedness with the world.