Wednesday, September 29, 2010

Day Twenty! Beach

Today I had to bring the car for a NCT test in Youghal, which is about a half hour drive from here.
I was apprehensive if I was able for the drive, but did it! And oh boy, was I rewarded for my efforts.
After the test I drove to the seaside, about 5 minutes further. The tide was in and waves were hitting the rocks. My cousin, who was with me, walked along the rocks and along the tiny strip of beach while I sat at the top of the concrete stairs, baking in the sun.

A young man was sunbathing; Two men at least in their seventies, were changing into their swimming togs, their bare bottoms showing; A nun walked along the promenade, her vale tucked into her grey fleece, left hand on her back, holding a rosary beads.
The delight of this gloriously sunny day so late in September showed on everyone's face.

I was proud, so proud, to have driven to this glorious place!
My only regret.... no camera...

Monday, September 27, 2010

Day Eighteen. Write a story from this picture

I found my first ever story...
A short story...
Now I wonder, will this story about a young poor girl finding her riches, written at the age of eight (or there about), be good enough to enter into this rather prestige writing competition?

In all seriousness, for the writers among you, this Paris Literary Prize might be worth having a look at.
For the M.E'ers among you, this might be of interest? Story contest

Happy Writing!

Sunday, September 26, 2010

Day Seventeen A reflection on creativity

Seed

Observations
Thoughts
Feelings
A word

All
place
a tiny
seed
in my
creative
being

Some
will make
their presence
known
to the world





Saturday, September 25, 2010

Day Sixteen; Reflection on writing

My mothers illustrated notebook with stories about her childhood

For a long time I wondered where my love, desire, and need for writing came from.
I didn't have to look far. My parents, siblings, and great grand father, all wrote.

My great grand father wrote letters for other people, during the late 1870's. "Even to the queen", as my mother recalls in her notebook. The letters were closed with waxed seals.
Oh how I wish to see one of his letters.

My fathers notebook

My dad wrote during the second world war, while in the army. His words are all about how much he didn't want to be there.

Letter writing was a big part in our family as first my mothers sister emigrated to Canada in the early 50's. Later her children, including me, emigrated. My mother had kept many of the letters we wrote to her. Three of my siblings spend many years travelling the world, in which again, writing diaries and letters were a big part of their day.

As consequence to her emigration children, my mother travelled to us in Canada, Chile, USA, and Ireland. All her travels were documented. Apart from this she wrote an illustrated notebook about her childhood. A valuable piece of storytelling.

Is it a wonder I like to write?

Friday, September 24, 2010

Day Fifteen- "Hatched" Day of world book tour

I almost had to cancel this third day on the Virtual-World-Book-Tour.
I kind of collapsed again last night. Even after twelve years of living with M.E. these relapses still have the habit to scare 'the poop out of me...'

Lying in the bath to deal with muscle pain, I suddenly felt very unwell. Got out of the bath, but had to sit on the floor in order not to fall. Heart/and heart beat jumping out of any possible part of my body. Feeling of fainting close at hand. After full bed rest for 16 hours, I feel some bit in control of my day again.

I wondered this morning, do I start -Round Two of my 'Day-journal? But decided just now that I will keep counting. I only 'lost' 16 hours, not 24...

Even with the positive meditations/hypnotherapy session and telling myself and others "I AM GOOD" will not stop the M.E. from wanting to take control. Wanting to be heard.

I will continue with my tour, although in a lower key.
Here some pages of my book Hatched- a Creative Journey Through M.E.

The background...
Being so ill felt like I given a chance to re-start my life in a way. The theme of Eggs-Hatching- to flying became the motto which made it's way through my art and writing.
Seven years of diary writings were reduced to a few words, 'poem like', to give a little glimpse of my life, the good and the challenging. The illustrations are art-works that I created during this same period



For more about the 'Virtual-World-Book-Tour', how to participate,
or purchase books, please click here


If you like my blog posts, you can sign up by clicking on the FOLLOW button at the bottom of the page.
You can also leave a comment.
Much appreciated!

Thursday, September 23, 2010

Day Fourteen - A virtual reading of the Cirrus Chronicles

As part of my Virtual-World-Book-Tour, I would like to 'read' you chapter three of the Cirrus Chronicles-Landing in Ballynelligan: Wet Trousers.

As introduction:
Cirrus, is a 10-year-old Cloud Fairy. During the Cloud Hole Jumping event at the Cloudland's International Rainbow Dance Festival, Cirrus fell through the hole, sliding with great speed down the rainbow below him, legs in the air.



Please see yesterday's blog for further details about the
Virtual-World-Book-Tour.

Tomorrow a 'reading' from Hatched- A Creative Journey Through M.E.

You can leave a comment in the comment box - if you like.
It is possible to become a 'follower' of the Little Wings Blog
by clinking on the 'Follow' link at the bottom of this page.

Thank you for your visit!

Wednesday, September 22, 2010

Day Thirteen- A Virtual World Book Tour

As I have come to the conclusion that it is unlikely I will be doing a Real-Life- Book-Tour in the foreseeable future (yes I agree, it took me a while), I have decided to go on a virtual one!

Here's the "schedule" for both Cirrus Chronicles and Hatched
  • I will be appearing at the Cirrus and Hatched Facebook pages, where you can see sample illustrated pages, and read reviews
  • I will answer any of your questions about the writing of the book, the inspiration, the illustrations, or whatever is on your mind regarding these books.
  • To partake in the discussion, please visit the Cirrus Chronicles- Discussion Board
  • Or, if you have more interest in Hatched, then click here
  • On both these pages you can also add your personal comment.
  • I will be in the Coffee Lounge in the M.E Centre in Second Life on Friday 24th September 12pm (pacific Time) which is 8pm Irish/Uk time (I hope to goodnes I got this time 'thing' right)
To Celebrate this Virtual-World- Book-Tour, there is a special books offer:
Order both books for €25, see SHOP
(discount of €5);

I will sign the books with a personal message
(please give details on the order form);

And am offering Free Worldwide Postage,
(as if we were to meet in real life there would be no postage!)

The books are also available individually, see books

(The proceeds will go to the financing of the next edition in the Cirrus Chronicles
and/or a novella...)
  • To make it a real big event, please invite your friends to the Hatched, or Cirrus Facebook pages!
  • Many thanks to all of you who have already read my books, and emailed or posted hand written letters, with comments about my work (my babies), and a big welcome to my new readers and friends.

There are refreshments in your own kitchen, or I can offer you a virtual glass of wine! :- )


If still sober, or even when not, it is possible to leave a message/comment! Thanks!

Tuesday, September 21, 2010

Day Twelve, Independence


...Scooting on the beach.. as long as I kept moving, my scooter didn't sink into the sand...


I had another story in mind, but what follows fueled my mind too much to let it be...

This morning I received a message from someone with M.E..
She is, like myself, able to drive a short distance but then can't do much when she gets to her destination. Her legs 'just won't do it'. I know exactly what she means.
This lady has looked into wheelchairs and mobility scooters. Responses from others to these aids are they are either 'too confronting' or ' you don't need one of those'.

It makes me immensely sad that the person already dealing with the daily challenges of living with a debilitating illness has to struggle even more by having to convince people about their needs.

Independence is, as I see it, a major key towards wellbeing.

If it means that one needs the use of mobility aid to obtain this independence, so be it!
I am not saying that is it easy...

My own experience:

Very early on in the illness I got a loan of a wheelchair as walking was not really an option. For days I avoided looking at the chair. I couldn't imagine myself in it. I had been a nurse and pushed chairs, I wasn't suppose to be in it.... However I realized very quickly that this chair was my way out of the door.... if I had a pusher that is. I couldn't move the chair myself.

A scooter was mentioned by an occupational therapist.
After a LOT of sole searching I made an appointment with a seller to show me a scooter at my home. I drove it. My brother happened to be with me and said: "Get it". I was not at all sure. I though it looked ridiculous.

I did buy it and struggled for a while with peoples responses. Sniggers from youngsters, funny looks from adults. I kept telling myself, and when appropriate the laughing onlooker, that this machine was my ticket to independence. I could go out when it suited me. Not when I had a pusher for my wheelchair. One friend suggested, "You are setting a trend."

Yes, it is an emotional struggle, BUT the scooter means independence.
And my (travel) mobility scooter is so compact that it can be hoisted into the car. My independence has now reached further grounds. I can bring the scooter when I go for a drive to town. I can take the scooter out and not get too exhausted with walking. I am able to safely drive home again.
And feel proud!
I even brought the scooter to Holland, and was able to explore my old city on my own.

No sniggers can stop me now!
And I hope to goodness, those of you who read this, and could do with a little Anand (best friend), that you will put your own needs first!

The scooter is a lifeline!
Listen to your needs!

Ps, I also get positive responses to my scooter-use, which are of course very welcome!

Monday, September 20, 2010

Day Eleven, Birds

As it turned out, I didn't take Robert Cat's advise about taking it easy yesterday. My day turned into a somewhat chaotic day, and only I am to blame for that!
The day felt a bit like the crows here hoovering above the field of recently cut barley, opposite my house.
Thank goodness I came to my senses and observed the more tranquil view of swallows having a chat (love their chattering sound) on the telephone wire. (over the same field)
I imagined them communicating about the trip they are about to make to Africa.

"Now listen up. Have a good look around this place. I expect you to find this exact location again next year, to rear your own chicks."
"Yes mam." The young swallows twitter in tandem. "You told us this so many times already."
"Fair enough, but I am nervous. We only have a short time left to fit in enough flying hours to get you ready for the journey of a lifetime."
"Yes mam." The young ones say again, while fidgeting on the wire.
"Don't 'Yes Mam' me!" The mother responds. "This journey is no laughing matter. Remember to always stay close to me and your dad, so you won't get lost in the huge flock that will be travelling."
"Yes mam, we promise, now can we go and play?"
"Of you go."

Sunday, September 19, 2010

Saturday, September 18, 2010

Day Nine, Autumn's gifts

I have decided that I love Autumn. I probably already knew this, but with views like these (just opposite my house), it has once again been confirmed! The morning fog lingers over the river. Only over the river!
One day last year I had the fortune to see the long shadows over the plowed field, with again that mystical fog!

Also I have come to the conclusion, that autumn and winter are much better times for me to work on my writing and arty projects- which make me happy. In the summer I am outside - a lot- (and probably do way to much in the garden). The garden, is a pretty happy place to be as well, just more physically demanding. Now September is here and I can hear the school bell every few hours, I am settling into my work again.
Loving it!


Friday, September 17, 2010

Day Eight and counting

Yesterday, the first week's anniversary of this wellness blog series, I treated myself to some new clothes. Nothing special you might think, but ... I drove myself to the shops! I hadn't been able to drive for at least six months, and felt overjoyed, scared, happy, apprehensive, excited, worried, but most of exhilarated to be able to driving again.
I even told the assistant about my big event. She couldn't believe that I hadn't been able to drive for so long. Until I told her that before that I hadn't been able to drive for over eight years.
She assured me that if I had any difficulty in driving home again (always the biggest worry) to make sure to let her know, and they'll help me out somehow.

I have a car which is adapted with hand control, and with a hoist in the back to bring my mobility scooter along. Being able to drive opens many doors to independence again. Just to know that I can use the car is enough to make one feel less trapped. The same as with my mobility scooter, which gets me to the local shops or to the river.

I must say that I was relieved that I made it home safe and sound, and didn't mind that I was very tired for the rest of the day. Today my arms feel like they are filled with lead, a lovely reminder of my escape!

Thursday, September 16, 2010

Day Seven- cycling!


At the end of the healing meditation, it its suggested to focus on being well. As my biggest desire it to be able to cycle again, this is usually the focus of my well being. I can feel the wind in my hair as I cycle on little country lanes and see the spectacular view over Lismore and Cappoquin.

This morning I returned from the meditation with a huge smile on my face, as I had not just seen myself on the bike, but at the back I had my two 'guides', a friend in her late forties and my long time deceased granny. And boy did we laugh!

The only photo I have of myself on a bike is the one above. Attempting to carry my much bigger friend on my bike.

Apparently I had walked the previous weeks up and down the street with my bike as didn't accept anybodies help to learn how to actually cycle!

Stubborn? Me?

Wednesday, September 15, 2010

Day six -Back on track

There is nothing as valuable as a reminder of what one values... Health. Wellbeing. Friendship. Support.

Yesterday I received an email with payment notification for a copy of the Cirrus Chronicles. I always ask the buyer if they would like me to dedicate the book to anyone, or just sign it. Jenny responded "dedicated to all the ME sufferers of the world - united we stand!" This gave me goosebumps.
This morning I received a response to a message, and in it Kirsten wrote: "decided though that when they find the magic cure for this [illness] it's time for a world tour for us all and we'll pick up people as we go and travel in triumph."

It is wonderful how support can be given by just a few words, from people we are unlikely ever to meet in person. Unless Kirsten's idea come true!

Also had the fortune of spending a few hours in the company of a dear friend. A good end to a day that started rather challenging.

As my photographs seem to make people laugh- thank you all, it's lovey to share with you, I have added a few others on my facebook page.

"The best catch of the year!"

(I found this little figure, about 4cm high, on the road one day- hours of entertainment! Here with a chocolate fish)

Tuesday, September 14, 2010

Day five, sympathy from 'granny'


This morning I woke with a lot of pain, probably the result of an interrupted sleep. I realized yet again how hard it is to stay on the positive side of things when every step hurts.

After acknowledging that I couldn't do the things I had planned for today, I started to relax.
I thought about funny things, like the wind-up-grannies, that never fail to put a smile on my face. The granny with the rolator sympathised with the difficulty I experience with moving around; she was unable to push her rolator! The swimmer however, was 'full of energy'!

After resulting to take painkillers, I read a book - while horizontal. Enjoyed the story: Foster by Claire Keegan.
After a nap I feel on the positive side again. Thank goodness!
Roll on Day six!

Monday, September 13, 2010

Day four - All I desire

Saturday night I was listening to the RTE radio Poetry programme... In true fashion I have forgotten the name of the poet that was featured. What I do remember is that this American poet sold his house and pretty much all of his belongings in search of the 'Poetry Life'. A life where he and his wife are fully immersed into poetry; the writing of it, and the publishing of it. They lived in an army tent on a small island and set up a printing press there.
They have all they need. Poetry. A quiet life. A life in nature. Not materialistic. Not so much money, but happy.

I can identify with that. I have all I need. I have all I desire. I live that quiet life. Within this, I would like to focus more on my writing, and creativity.

I wrote, and worked on the 'Family Tree' project after the program was finished.
Happy.
My handmade family tree book (to be).
and the page about my Great Grand Mother
(fabric, threat and text)


Stepping naked in front of the whole world


The "long awaited article" about the effects of social online networks for people with M.E. is finished. I actually ended up with two versions.
One that chronicles, in some detail, the experiences of the 15 participants to the survey:


“Stepping naked in front of the whole world…”
This is the way a young woman living with the condition M.E. (in some countries referred to as Chronic Fatigue Syndrome, CFS), described her first encounter with the social networking site Facebook.
Bedridden and housebound for the past twelve years, 32-year-old Kirsten rarely sees people other than her immediate family. Making contact with people through Facebook felt “scary” she said. Now this online network has become her major source for social contact. It makes Kirsten feel part of the ‘real’ world again. “It reconnects me to who I am outside of the illness, and reignites friendships from all parts of my life. My story is about more than this illness. I still have something to contribute.” Social online networks also gives her instant access to support from people who understands what she is going through. Kirsten follows what other people are doing creatively, and how they live their life. “However,” she added, “the contrast between the lives of healthy people and those who are not, can be ‘very in your face’ and hard to take at times.”
Kirsten took part in a small survey conducted (online) among fifteen people living with M.E., ranging in age from twenty-two, to seventy-one, living in Australia, UK, Finland, and Ireland.
The idea was launched after Corina (48, housebound for years, now left with limited mobility and low energy) found herself making the reluctant entry into the world of Facebookand Blogging. Her initial Facebook page was under the name of her fictional book character Cirrus Kalani, to promote her book. Responses to ‘friends’ were written from his perspective, a 10-year-old Cloud Fairy, having only visited earth once in his life. Slowly Corina changed the profile to her own name and started to enjoy the benefits of this social network. “I love the support, the sharing of photographs of life around us and the little things that make us smile. I found a happy bunch of friends! I think about my new online friends as often as my real life friends. They are all part of my life.” But, she realized that Facebook was becoming a double-edged sword because the time she was spending on the site was impacting on the time she could spend on her writing. She wondered what the experience of other people with this debilitating condition was and as a result wrote a series of questions on her blog and invited others with M.E. to contribute.
“Positive effects are HUGE,” Sophie (30- mostly housebound) commented. “As a naturally extroverted person with lots of opinions, it’s incredibly helpful to my wellbeing and for maintaining ties with my offline friends.” She particularly uses networks like Twitter and Livejournal to stay in touch with other people with M.E.
Adrielle (24, housebound except for short trips out in the wheelchair, pushed by her mum) uses Twitter, Facebook, and Foggy Friend an ME support site. Adrielle also enjoys the contacts on Puzzle Pirates because of the chat aspect. “Becoming ill at the age of eighteen, my real-life friends gradually drifted away. The only people I regularly see are my immediate family. Chatting online lets me talk to people, and it is awesome! I have made lots of friends around my age, who have similar interest to me, and whom I couldn’t live without! Lots of friends also have chronic illnesses (including M.E.), so they really understand and can offer real support.” She added that she uses a ‘talk to text’ program on heriPad, which allows her to use Twitter when unable to type. She is keen to raise awareness and increase people’s understanding of M.E.
Kate (22, Mostly housebound) feels more connected than she would be without the online networking opportunities. “It is a chance to make new friends and connections. However it is tempting to spend too much time online, therefore using up precious energy. Easy to do especially when you’re feeling extra isolated!”
Adam (71) noted that he does not have many social networks in terms of physical groups of people, other than the camera club meeting once a month, and the occasional chat with neighbours. While taking part in the Creative for a Second Journal Project, the organizer Kirrily suggested that participants sign up for the Facebook page“Bless her” Adam wrote. “Facebook is having a very positive effect on my wellbeing. I am finding it more and more enjoyable as I extend and deepen my contacts. Facebook is very much a two-way thing, you get responses to what you write. We do need to know that we are alive, don’t we?”
Adam, like many others who contributed to this survey maintains a Blog, which in some way chronicles life with M.E, but maybe more importantly, shows strength and inventiveness, and many creative explorations.
For ‘Cusp’ (54), the virtual contacts are a lifeline. “Blogging has been good because it encourages me to write and express myself, and it garners feedback and discussion.” Having just recently joined Facebook, ‘Cusp’ enjoys the immediacy, silliness and jokes, and support that he finds there. “The downside of Facebook is that you can get ‘sucked in’, stay too long, and get exhausted.”
Julia (46, mostly housebound) finds that using social networks have had a terrifically positive impact on her emotional and psychological well being. She says that it helps her be part of what she feels is an alternative society, and as far as she is concerned, a much more understanding one. Here, she feels she can contribute where otherwise she would feel relatively unfulfilled as an individual in her own right. “I see it as a positive move towards my future.” She added, “Spending time on the computer when my body is hurting can be physically stressful and emotionally fulfilling at the same time. Finding a healthy balance isn’t always easy, depending on what takes priority at the time, I guess.”
As she had experienced some not-so-supportive sites, which had a negative effect on her health, she set up her Facebook- group ‘The lighter side of ME’.
Maija, (26, very limited mobility in the past) feels that if she had not set up her Finnish CFS/ME forum, she might not be alive today. “I would not have heard of my doctor.” In turn she has helped many other people, by introducing them to new doctors, medication, or supplements. She met one of the people of the forum in real life. Besides following manyBlogs on disability, health and medicine, she maintains a food Blog herself. Maija has written two books – one covering CFS/ME/Fibromyalgia treatment and another aboutTwitter. In the latter she has a section about how Twitter can be an easier network to use than other social networks especially when energy levels are very limited. “I got both of the book deals thanks to Twitter.”
Ricky (35, until recently 100% bedbound, now able to sit up for 2 hours) uses Facebook, Twitter, Ning groups, Dreamwith and LifeJournal. Through them she is able to stay in touch with her real life friend online. “I see photos and stuff they do and so forth- not forgotten and don’t feel so left out.” Ricky has a computer system with assisted technology to enable her to work on the computer while lying flat in bed. She builds websites, and writes and publishes online. “Great for my feeling of being ‘useful’ and my ego in general when people respond to my writing.”
Some of the people she has met through Livejournal are now real life friends. Also talking with other people who are ill means that she feels less ‘needy’ to whine to healthy friends. “Which is better for all of us!” she added.
Jenny, (41, partially housebound) also uses Facebook to stay in touch with other sufferers. “The thing I love is that you can post a question and people will pop by with advice. It makes you feel less alone. You meet the most wonderful people and I truly enjoy helping them as much as they are helping me.” Commenting on the downside of social networks, Jenny says, “It can be quite upsetting at times, when you hear of very sad stories regarding the tragic cases – young kids on ventilators, people being unable to walk, and people who have passed away from the disease. She added: “It’s always a reminder that we must continue to raise awareness and educate those who do not realize the seriousness of this disease.”
Dianne (59, housebound) has been ‘woken up’ by taking part in Facebook. She now looks for things to share, and is more aware of her surroundings in case a ‘miracle moment’ might happen. She looks out for amusing or touching things, and so finds herself to be more positive. “Finally!” Dianne said. “I have rediscovered the joy of writing and I try to find just the right word or expression to say something that reflects how I feel. And I have a lot of fun laughing at myself! My world has enlarged and I am grateful to whomever organized this technological networking.”
A network called EGGdish where the emphasis is on gratitude helps Sarah (37, ill on and off for four years) to deal with lives challenges. Through Facebook Sarah connects with long lost relatives and has taken up a family tree project. “It has been great to ask relatives questions about the old days and share photos.” Facebook is also important to Sarah as it helps her to hang on to those parts of her identity that sometimes seem to be in danger of disappearing.
C. (47, housebound at times) has used Facebook to share feelings and creative ideas with others in similar situation all over the world. “I think is gives us an opportunity to grow and learn and it also takes away the loneliness, depression and frustration often felt by the social limitations of having ME. “Going out requires more use of physical and mental energy. We often need to rest before and after going out. Switching on the computer and simply clicking the mouse is easier.” She added that being on the computer unknowingly exhausts the brain, which in turn takes away from other activities that may be better for overall health and healing.
S. (47, able to go out quite a bit), observed the danger of over-reliance on social networking to the detriment of establishing real and meaningful relationships, face to face. Aware that some people have few other options, she feels that it is important to not let the Internet be the only means of communication. However, S. experiences the contacts via online networks as hugely positive. “It has helped reconnect me to the world and strike up relationships with people I would never have had the opportunity to meet. It has helped me to share and obtain information and provided education and entertainment in lots of different ways. Diagnosed with M.E. fifteen years ago, we didn’t have the Internet then and I felt lonely, isolated, and very disconnected from life.”
Social online networks and the Internet in general are almost like having the world at your fingertips. Meeting likeminded people online and facilitating ways to stay in touch with friends from pre-illness times, proved to be a significant tool in the management of their illness – especially those who suffer from chronic illnesses like M.E.
For further information about M.E. please visit Information. For full responses to the survey, see Blog at www.corinaduyn.com

the other, more condensed version, shows a more general view :


“Stepping naked in front of the whole world…”
Social online networks, and the Internet in general are almost like having the world at your fingertips. A small survey, conducted by Corina Duyn among people living with M.E/CFS, showed that meeting likeminded people online and facilitating ways to stay in touch with friends from pre-illness times, proved to be a significant tool in the management of their illnesses. The majority of these women and men are housebound and in some cases bed bound. The ages of the fifteen people who took part in the survey ranges from twenty-two, to seventy-one, living in Australia, UK, Finland, and Ireland.
‘Stepping naked in from of the whole world’ is the way a young woman describes her first encounter with the online networking site Facebook. After being bedridden and housebound for the past twelve year, making contact with people through Facebook felt “scary”, said Kirsten (32). Like many others in her situation, she rarely sees people other than her immediate family. Now this online network has become her major source for social contact. “It reconnects me to who I am outside of the illness, and reignites friendships from all parts of my life. My story is about more than this illness. I still have something to contribute.” Adrielle (24) agrees. Becoming ill at the age of eighteen, her real-life friends gradually drifted away. “I have made lots of new friends around my age who have similar interest to me, and whom I couldn’t live without! Lots of friends also have chronic illnesses (including M.E.), so they really understand and can offer real support.” Adrielle uses a ‘talk to text’ program on her iPad, which allows her to use Twitter when unable to type. Assisted technology enables Ricky (35) to write and publish online, while lying flat in bed. “Great for my feeling of being ‘useful’ and my ego in general when people respond to my writing.”
People taking part in this survey herald social networks like Facebook, Twitter, and LiveJournal. “Terrifically positive impact on my emotional and psychological well being.” “Incredibly helpful to my wellbeing and for maintaining ties with my offline friends.” “My world has enlarged and I am grateful to whomever organized this technological networking.” “I think is gives us an opportunity to grow and learn and it also takes away the loneliness, depression and frustration often felt by the social limitations of having M.E.”. “It helps being part of society, albeit an alternative one, and as far as I am concerned, a much more understanding one.” “I see being part of this network as a positive move towards my future.” “It makes you feel less alone.” “Able to share creative ideas with others in similar situation all over the world.” “It helps me to hang on to those parts of my identity that sometimes seem to be in danger of disappearing. “I enjoy the immediacy, silliness, jokes and supportiveness that goes on, on Facebook.”
Blogs are another way for people with M.E./CFS to stay in touch with the world while adding their voice to bring awareness about the condition. “Blogging has been good because it encourages me to write and express myself, and it garners feedback and discussion.”
Some people set up their own groups to fulfill a specific need. After experiencing some not-so-supportive sites Julia (46), set up her Facebook group ‘The lighter side of ME’. Maija contributes her recovery to the setting up of her Finnish ME/CFS forum. Others joined specific groups set up by others, like EGGdish, where the emphasis is on gratitude, or Foggy Friends, an ME Support siteor Puzzle Pirates for the chat aspect.
Even for those who can take part in everyday society, albeit at a much reduces rate, social online networks have their place. Adam (71) noted that he does not have many social networks in terms of physical groups of people, other than the camera club meeting once a month, and the occasional chat with neighbours. “As I extend and deepen my contacts on Facebook, I am finding it more and more enjoyable. It is very much a two-way thing; you get responses to what you write. We do need to know that we are alive, don’t we?” Sarah (37) has connected through Facebook with long lost relatives and has taken up a family tree project.
The downsides of partaking in online networks are mainly due to the limited energy available. “You can get ‘sucked in’, stay too long, and get exhausted.” “Spending time on the computer when my body is hurting can be physically stressful and emotionally fulfilling at the same time.” “The contrast between the lives of healthy people and those who are not, can be ‘very in your face’ and hard to take at times.” “Easy to overdo it, especially when you’re feeling extra isolated!” “It can be quite upsetting at times, when you hear of very sad stories regarding the tragic cases – young kids on ventilators, people being unable to walk, and people who have passed away from the disease.”
For people who are severely restricted in their ability to partake socially in the real world, online networks are a profound way of communicating with friends and family. The online support networks proofed to be a lifeline to many. Although the danger of over-reliance on social networking, to the detriment of establishing real and meaningful relationships face to face, must not be ignored. Ricky sums it up nicely: “Some of the people I have met through Livejournal are now real life friends. Also, talking with other people who are ill means that I feels less ‘needy’ to whine to healthy friends. “Which is better for all of us!”
For further information about M.E. please visit Information

Please forward the above articles  to newspapers, magazines, ME/CFS support groups etc. just let me know where you forwarded it to.
The articles are available as word documents.

Many thanks to all who participated in the survey and for "Stephie le Coccus" (Facebook name) for editing the long version.

Sunday, September 12, 2010

Day three

I am starting a new series of blogs. But, ... as I never seem to do things the conventional way, I'll start this series with Day 3.
Let me explain!

As you know, or in any case you know now, I have been living with the condition M.E. for the past twelve years. I had times of being pretty much bed bound, to a great degree housebound, and for the past few years, finding my feet (or wings) again to be able to partake in the world outside my four walls, or bird cage - to stay within the egg and bird theme (see Hatched).

I must admit I've had a tough time, but can't say it was all bad. I found my writers voice. I created drawings, painting, sculptures and digital art, which found their way all over the world and even into the virtual world of Second Life.
My gratitude to all who supported me personally and virtually is huge! A big thank you to all who stuck by me, and for letting me be part of your world.

My desire to be well is always present, and not more so than during the past six months when my trust in recovery was seriously undermined by a 'wrong' treatment and a series of respiratory track infections.
What worried me most during the past few weeks was that I felt 'down', 'flat' in a way. I didn't feel the same excitement for life as I had gotten used to. I did write, worked on sculptures, attended to my garden, but the joy of doing so didn't last beyond the time of being engaged in the process.

My G.P has been supportive and had helped me to find the cause of the infections, and my lingering exhaustion. Believing in the power of the mind, I also sourced the next 'guided meditation/hypnotherapy' download from Kerie Logan see Empowered within. Kerie has created a long list of meditations to combat many issues. I find her guidance very positive and safe.

One of the meditations, which I actually purchased to help me deal with an attachment to one of my ancestors, in turn became the trigger to help me on my road to recovery again. At least a mental one, which I trust in time will have a positive influence on my body.
In the meditation, I burned my chosen symbol for M.E. (my mobility scooter) to a white powdery dust. This was done after giving thanks to what illness has brought in life. I felt hugely supported throughout this process.

So now on Day Three since the meditation, I feel strong.
My mind set has changed. I tell myself I am well. I am calmer and more in tune with the day, my desires and hopes. To say that I am suddenly able to do everything my heart desires would be a lie, but feeling better in my mind is a huge bonus. Once again see that physical healing is more within reach.
"Was greated by a lovely cloud of a 'puppy' giving a paw'."


Thursday, September 9, 2010

Corina Duyn (author)

I received a letter in the post today with the following written on the envelop: Corina Duyn (author), followed only by the name of my town, and the county.
This kind of posting is 'only' possible in Ireland. Well, certainly not in any other developed country (... I can hear you think ... Ireland- developed..? Who are you kidding...) The lady had so much trust in the postal system that she didn't even write a return address on the envelop!

In my 'previous life' as a doll artist, I remember a letter with ... I don't remember... need to find it.. ah.. Folk Art. followed by town and county. It did not even have my name on it!

Anyway, today's letter, written by a woman with M.E. was a welcome arrival on my 'proverbial' doormat. This lady had read my story 'Edvard Munch meets Louis Armstrong' ( read it here- page 11 ) in the IWA- Spokeout magazine, and wanted to congratulate me on the story. She identified with the theme - the passing of a parent. She also has M.E. and wrote she is able to get out into her garden, and was a little envious of my polytunnel!

Incidentally, yesterday I received a letter in the post from an IWA bus driver/P.A. from Midleton, who asked permission to reprint an article I wrote for the newspapers Those disabled look funny don't they .

Both these letters and comments on my Facebook page were a welcome boost to the confidence in my writing.
I can't say I suffer from writers block. The times of uncertainty, I just write in my notebook, about writing.... if I can, or if I can't, and if I can, what will I write about? Pages and pages!

The past few days I've been working on the article about the for and against of social-internet-networks. Watch this space!

Thanks all for giving me that little boost again.

Thursday, September 2, 2010

Thank you all!

"We might not be at our prime, but we still have something to share and give!"

Further to my blog about what influence social (Internet) networks have on the lives of people with ME. I would like to thank all those who have participated in this research. Some of you participated through Facebook, through the blog, and some asked to remain anonymous and responded either via email or the contact form.

The comments were very interesting indeed, and I will do my best to create a coherent piece of writing from it all. I have my work cut out!

On a personal note, I realize that I avoided social networks like Facebook for a long time, but am glad to be part of that community now, as an addition to the real life networks of friends.

Love to you all!