Tuesday, July 6, 2010

Is M.E. for real?

A day of contrasts... to say the least.
I received a book in the post "Lost Voices- from a hidden illness". A book about young children and adults severely effected by M.E. Later I went to the library and was given a DVD that was made in 2004 during the launch of the Fit to Fly DVD. Re-living that day, made me swing from pride to distress and back again.

To add some fun to the day, I brought a visit to the M.E. centre at Second Life. After reading about an autobiographical novel written by a person with M.E. 'The state of me' I went looking for the beach to relax. On my way, I came across a trampoline.
There I was jumping to my hearts content, (without getting pains all over my body that would last for months, as after my last real trampoline adventure) another avatar joined me. She didn't jump, but asked for an introduction.
I was asked if I was a lecturer, or a visitor. I told her about M.E. and that I come here to do the things I can't do in real life.
To my absolute horror, she responded "is M.E. for real?"

I did get an apology, but it still leaves me rather horrified...


Kirsty Best said...

Sorry to hear about your experience Corina :(, but remember that the rest of the island is for Murdoch university. She was probably a student, especially if she asked if you were a lecturer. The truth is that people DO wonder that (and younger people may be bold enough to say it) but what we are doing by having the Centre is showing that yes, it IS for real—and really devastating to people's lives. It would be a good opportunity to invite her to go to the ME/CFS Centre, look at the art (which is so evocative of people's experiences with ME), and read the information provided. The Centre is there not only for support, but also to spread the word about this misunderstood illness, one person at a time!

Corina Duyn said...

hi Kirsty, thanks for your comment. Yes I think she was student at the university. She wondered about if M.E. was for real, also because she had never met anyone of us. I suggested to her to go to the centre as there is a lot of information about M.E. and to visit the art exhibition that will show her the reality of M.E.
Although she didn't comment on this, and soon went on her merry way, I do hope that she will take some time to have a look at the works.

katy said...

Please excuse me if this is off-topic but where do you do your virtual trampoline jumping?

Corina Duyn said...

Hi there Katy, Thanks for your visit to my blog.
I do all sorts of fun things,including virtual trampoline jumping, outside the ME/CFS Centre at the Murcdoch University, in Second Life, (see earlier post: Meeting of the Jelly Bellies', and the comments to it) There is also a link to this under "living with M.E.' section on the right.
I look forward to meet again. Best wishes

Kirsten said...

have seen that book 'lost voices' but didn't feel it was somewhere i could 'go' at the moment...nasim's book was such a discovery - have bought 6 copies to give to people now! a way of explaining without it being too factual etc.