Friday, May 12, 2017

MEme at the Dublin Millions Missing Protest

Avondhu Newspaper 11 May 2017, page 19
MEme at the Dublin Protest
MEme at the Dublin Protest

See more images about the Millions Missing Protest on Corina's Blog

Tuesday, May 9, 2017

MEme is attending the Millions Missing Protest in Dublin

This post was first published on Corina Duyn's Little Wings Blog on the 8th May 2017 
MEme a small stuffed penguin which is Corina Duyn's alter ego, is ready for action for M.E. Seated on a wall wearing a red tshirt and holding a banner
MEme M.E. me is ready for action

MEme and the Dublin Protest

In 1998 I got suddenly very ill with suspected meningitis. This was luckily not the correct diagnosis. However, this sudden onset of extreme fatigue, terribly headaches, the inability to coordinate my movements, to sit up for any length of time, or to have a conversation was the start of a now 18 year long journey with M.E. (Myalgic Encephalomyelitis).

My life changed within weeks from being a self-employed artist to needing care with even the most mundane of actions, like opening a tube of toothpaste. The ability to create detailed sculptures vanished. My love of reading became a task no longer available to me.

The first few years I was more or less housebound. After begging with the HSE, I was given home-help every day of the week, twice a day. At first I was told this was not available to me, as I was only 36 years old. You needed to be over 65... But I got it. Maybe as I otherwise needed to be taken into full time care? In today’s world getting home help for so many hours seems like an absolute miracle. 
Times have changed.

What has not changed that in all these years there is still not an absolute diagnosis of M.E. given by any doctor in Ireland. The term Chronic Fatigue Syndrome is more often used, but is in no way correct.
There is no consultant in Irish hospitals who deals specifically with M.E. 
It is not unlikely to end up in hospital and meeting a doctor who would ask: “M.E., What is that?

Often M.E. is written about in the media with a notion that “It is all in your head”. A purely psychological illness. Trust me, it is not. I wish. I wish I could get my body to function properly again through talk-therapy, or through anti-depressants. I wish.

Throughout the years I have found ways to make my life the best it can be, within all the limitations I still experience. Mainly through creativity, pacing and silence. This is not a cure, by any means, but a positive halfway point. A place in which I can escape the reality of illness.

There is no proper interest from the HSE to deal with estimated 14,000 people living with M.E. in today’s Ireland. To bring this injustice to the attention of politicians and the HSE, a group of inspiring (mostly) women have come together to see if this can be changed.

On Thursday 11th May there will be a demonstration at the gates of Leinster House, between 11am and 3 pm, under the Millions Missing Banner. We have asked politicians to come and talk to us. To our representatives. 
All the millions of people living with M.E. world-wide who are missing from schools, work places, family events… from life as we know it.

MEme a small stuffed penguin which is Corina Duyn's alter ego, is ready for action for M.E.  wearing a red tshirt with the Action for ME logo
MEme M.E. me is ready for action
I won’t be able to travel there myself. But MEme (a little stuffed penguin: M.E. me) who is my alter-ego, and has traveled for many, many years to places and people I could not get to, will be taken my place. 
And hopefully will help in our bid to change the lives for the better of all of us living with this most challenging of illnesses. MEme will be there with some of the people who live with M.E. and their carers, and among 250 pairs of shoes of those who can not attend. Accompanied by a few words on where they are missing from.

We would like to ask you for your support. Many of us will not be able to travel to Dublin and will be protesting from our beds, couches and homes through social media. Please be at Leinster House instead of us?

Thank you!

Contact Corina Duyn

Further Reading:

MEme on her way to Holland

This post appeared earlier on Corina's Little Wings Blog, 9th March 2017

meme is "an idea, behavior, or style that spreads from person to person within a culture". 
memeacts as a unit for carrying cultural ideas, symbols, ...

But, my MEme is my alter ego who travelled the world for me to friends, family and strangers when I was housebound in the early years of illness (ME/CFS). She started her --- our--- travels in 2001. Long before the meme's becoming a trend!

She travelled by post, armed with a diary and disposable camera. This was years before digital cameras, smart phones and social media. Whoever had Meme would write in the dairy what "we" had done, and took photos.

When the diaries returned to me, I remember lying in bed, and REALLY feeling that I was looking back at my own adventures.
It was powerful.
It still is.

MEme has her own blog where a few of her adventures are documented. Travels to Holland, Israel, Eirtrea, Ireland and Canada, that I can add more of her diary pages there, now it is easier to take a photo with my smart phone and upload the images. In the past I had to scan, and edit the images. I ran out of steam to do that. Other travels were to Chile, Australia, Morocco, UK, Yugoslavia ...

MEme Corina Duyn, small stuffed toy penguin sitting in a bowl of water and soap
MEme having a bath before travelling to Holland
MEme is on the road again.
She visited Eimear in Loughrea, Ireland during February, and she took off for a visit to my childhood friend Henneke in Holland a few days ago.
photo of two friends Corina Duyn and Henneke Tiebosch in 2011
Corina and Henneke in 2011
Henneke and I met up again in 2011, after decades of not having seen each other. I had moved to Ireland in 1989. But we probably saw each other last in the late 70's.
We met in secondary school and we suggested to our classmates that we were twins but brought up in different families...

Anyway. We made contact again after Henneke found me on the Internet. We started writing letter- the ones that arrive in the post- and during one visit to Holland in 2011, we met in a seaside town not far from where we grew up.
For years afterward I was not able to visit Holland again, and so have not visit my friend in her house.

Now "I" can.
MEme will go in my place, and I am very much looking forward to it!

MEme Corina Duyn, small stuffed toy penguin sitting on an envelop, ready to travel abroad
MEme ready for travel

Wednesday, December 28, 2016

MEme traveled in stead of Corina Duyn who was housebound due to ME/CFS

small stuffed penguin among her travel diaries
MEme among her travel diaries

Dear readers of the MEme diaries
For the past few years, Corina was not able to share pages from my diaries but she is determent to change all that in the coming year.

The new smart phone technology will make it easier to share my adventures here with you!
In stead of Corina having to put each page under the scanner, a labour-some job, she can no simply take a photo on her smartphone  (which she resisted for years to buy... ) and upload them on my page!
Happy days!

I might even get the travel bug again!

Thank you for your patience.
And for new readers, please see my introduction page and read some of the pages that were uploaded years ago... and perhaps sign up for new posts? You can do that via the 'sign up for email' box on the top right on the page.

Looking forward to have your company and Please, let me know you were here.

Lots of love from me.
M.E. me

two stuffed toys on a mini couch
my Chilean girlfriend Chuletta and me, Meme
ten small travel diaires from stuffed toy MEme
All my diaries!

Tuesday, August 28, 2012

Further afield!

 MEme took part in a sponsored walk with Self Help Ireland in Eritrea. A wonderful adventure, which really does warrant a large blog post of it's own.

 Other adventures abroad were in Canada, where she visited Corina's brother and sister in law. She spend time in a school for special needs in Kelowna.
... and was 'kidnapped' (with permission) by friends of friends, to go on a holiday to Newfoundland.
She even had her own seat in the airplane

Saturday, August 25, 2012

A quick MEme tour around the world

For now, a few snapshots of MEme's Diaries.
More detailed adventures to follow.


Visiting friends in Kenmare, Co Kerry, where MEme took part in the
"Colour me Beautiful"- Barbie- Party

A big night out in Holland!

Monday, August 6, 2012

Family visit

After a visit to the beach on Youghal, MEme travelled on to Corina's sister Ina in Co. Roscommon.
She spend a lot of time with the dog Una... who always thinks it is time for cookies...

This lovely cottage is surrounded by a lovingly created garden.

 Lots of work to do in the house....
 MEme had a party on 4th October, which in Holland is Animal Day. She, and Una had a white ribbon around their necks, with the Irish shamrock printed on it.
Here in the photo we are on the way to pick up Corina's mother "Oma" from Bunratty. Oma is coming for a visit. She had already been visiting Corina's brother in Kenmare.

Oma and I are having a long chat here and Oma made me a lovely red coat!