Thursday, August 19, 2010

Social networks for people with M.E.

hi there all,

for the past few weeks, I have been visiting my Facebook page on a pretty regular basis. And am loving it! This after swearing that I will NEVER have a facebook page…

So, why do I have one?

Well, shortly after my first book in the cirrus-chronicles was launched, I was listening to a radio interview where facebook was heralded as a great way to promote ones work. Good point I thought, so I set up a page under the name of the main character of the book Cirrus Kalani. (So I was off the hook, it was Cirrus who had a page, not me!)

Cirrus made lots of friends and commented on posts from his point of view: a ten year old Cloud Fairy who had only once been on earth – Ballynelligan in Ireland.


But, somehow, I – Corina – became more involved in the communication with Cirrus’s facebook friends. So about two weeks ago, I took the brave step to change the profile name to my own name.

Two benefits. I have been asked for ‘facebook-frienship’ by some people I have met in real life, and I made some new friends, some who are living with the condition M.E./CFS. All are a healthy bunch at heart. Thank you all! The second benefit is that I really enjoy their company and comments about the little things in life we enjoy, and that is increases my social contacts beyond the usual real -life -ones.

However, this is also where I ‘fall on my face’ so to speak.

My usual routine for the day was/is to check my emails in the morning, check if there is anything I need to respond to, and ‘put the computer to sleep’ again. Later in the day, I would like to get back to the computer to do some writing, or work on images, or whatever the plan is for the day.

But having increased my communications online, either through facebook or Second Life, I use up my alloted computer time for the day, and don’t get to do my work… A double edged sword. If I do both anyway, as I did- the pains in my neck-back-head are increasing dramatically. This in turn affects my overall day.

So, what to do about this?
I know the answer is pacing… be vigilant with energy consumption… but at times I am so in ‘need’ of social contacts, especially when my health doesn’t allow me much to go outside the door for the more common type of social interaction…

It makes me want to research- and write an article – for which I need your help- how the Internet, and in particular social networks, impacts on the lives of people with ME/CFS.

If you like to help me with this research – which I hope to publish on various blogs and ME/CFS support sites, and post it to the newspapers- please email me, or send me a message via my facebook or website-contact page.

  • I would like to know what social networks you use
  • what your situation is, in terms of being housebound etc
  • what age you are and
  • are you living alone, or being cared for by partner/parents.
  • what impact this type of virtual contact has on your overall wellbeing
  • and what is the downside/ if any
  • and anthing else you would like to add!
  • If at all possible, please email me before the end of August, Thanks

If you like to stay anonymous, please indicate this in your communication.

Thanking you in advance!

1 comment:

Corina Duyn said...

see for some comments to the dicussion on my website-blog