Sunday, October 23, 2016

M.E. What is that?

page from Into the Light © Corina Duyn 2015
My aim to write short observations/experiences of life with illness (M.E.) continues with this account of dealing with the medical profession.

Over the 18 years of living with M.E. I had a lot of dealing with the medical profession. I was brought to A&E on numerous occasions or was an inpatient in hospital.
Throughout this time, the condition was either dismissed as being psychological, as I wrote about in THIS post, or the name was simply not recognized.

I really thought this had changed for the better. About two months ago I was brought the A&E and was under the care of a young (Irish?) doctor. He didn't blink at any point when I explained the reason that I was seated in a wheelchair, was due to having M.E.
He treated me with utmost respect and understanding. Agreed with my coping mechanism, and adjusted my suggested medication accordingly.

I was 'over the moon' to be treated with such understanding. I did not have to fight. I did not have to explain.
But why should I be so happy? Why is it not simply a given that when you enter a hospital that the medical profession knows about the underlying illness a patient presents themselves with. Why should I be happy that I was talked to as if I had said 'artritis', or 'MS'...

But I was happy.
Happy because on so many occasions I would have been greeted with a 'blank'. With a question like ""What illness?" or "What is M.E.?"

Usually it helps to explain to the doctor that is it sometimes called CFS. Chronic Fatigue Syndrome. Which is a wholly inadequate name for the condition. There is a lot more going on in the body of a person with M.E. than simply fatigue. But that is a story for another day.

So, a few days ago I had an appointment in another University hospital, and was met by a junior doctor (not sure of his title) and I was utterly dismayed that he had not heard of M.E. I might as well have said some made up word like "I have manigraoblu"

Perhaps he had his training in a different country? (He was not Irish). But my belief that I no longer had to be a teacher about my illness, but could enter a hospital simply as a patient, were dashed. Once again.

I wrote a message in the email-comment-box of the hospital in question.
I wonder will I hear anything back. If I do, I will let you know.

When I wrote a few words about the last event on Facebook, I heard from many other people, that I am ceraintly not alone with this experience.


"M.E., What is that?"

Sunday, October 16, 2016

Sore hands and arms from walking

Yesterday I went for a walk along Lady Louisa's Walk, which starts just a few steps from my gate.
It is a walk I used to do almost every day in the autumn of 2008. It became the backdrop and inspiration for my book Cirrus Chronicles. In those days I would get beyond the first gate, and on very good days, to the field where I could see the Blackwater River. The field where Cirrus, a fairy from Cloud Nine, accidentally landed and met Sarah Robin ...

I used to love these little adventurers, where I could feel the air on my face, smell the autumnal changes in nature, and let my mind go to places beyond pain and exhaustion - to worlds unexplored.
All within ten minutes, of a slow walk, from my house.

Cirrus Chronicles is a modern day fairy tale for all ages.
See HERE for details, and a look inside
But for the past few years I just wasn't able for that 'far' a walk. I got to a few minutes a few times a year, but it wasn't satisfactory at all.

But yesterday was such a beautiful afternoon. Blue sky. Changing colours in nature. I needed to get out.
I contemplated using my mobility scooter, but it just didn't seem to be what I really wanted. 
A walk. A proper walk.

Proper walk, obviously being a walk of a half hour or more, to put on walking boots and get out there. Feel invigorated when you come back- kind of walk...

I went out. Got my two walking sticks ready; a plastic bag to sit on if my legs gave up; my phone- if I needed someone to 'rescue' me, and my cat Robert. Well he came voluntarily.

Robert usually comes for a walk with me, but this time he 'cried' when we passed the point we got to over the past few years. As if to say, 'are you sure you want to go this far'? He followed me and cried. 

I was chuffed that I go the first turn along the path.
I sat down on the stile, on my bag, and enjoyed to view I had not seen for so long. Robert continued to cry. 
I was very conscious that I had to walk back again, but waited long enough until I had sufficient energy again.

For the walk home, I set the stopwatch on my phone.
8.36 minutes, including three stops to take photos. 

Robert led the way.  Quietly! Not a sound out of him. Happy to bring me safely home.

My legs were dragging. I had to concentrate on every step. When I almost stumbled he looked up.

My hands were sore from leaning onto my sticks.

But the joy in my heart made up for it all.

Today my arms are sore. My legs weak. But I will go for a walk again. Tomorrow.

My heart is singing!

Thursday, October 13, 2016

off day - day off

Some days turn out not be so great

In stead of calling them 
'off days'
I call them 
'Day's Off'

and retreat into my cocoon

Cocoon  © Corina Duyn 2016

Wednesday, October 12, 2016

Finding new ways to be part of society - through the written word.

Thanks for stopping by!

I seem to be ill at ease at the moment - or perhaps for the past few months. I see it as a time to re-evaluate 'where I am at'. What do I want? What do I like? What am I capable of doing - within these thoughts?  What is it that I don't like, or cost me so much energy that it negatively effects my health and well being? Physically and mentally.

Two sides of sheet from Into the Light book in a box
A few months ago I had a solo exhibition, and even before this event I knew it was to be a challenge beyond my capabilities (at that time).
Not so much the creative side of things, as I had plenty of sculptures, a few tapestries, my books, and I very much enjoyed making the prints from the Into the Light images and quotes. All that creative stuff I can do in my own time.
Over the years of living with ME/CFS I have managed to learn the act of pacing, and made it into a fine art!

The challenges were all the 'other stuff'. The logistics of getting me and my art/books to the gallery (I don't drive); to organise accommodation for a few nights so I could divide up the energy required for travel, from being present at the setting up of the show, and the actual launch night, and recover enough to travel back again. Having to deal with the gallery, organising the promotion etc. etc.
It took me months to recover from all this, and maybe my recent health challenges are a result from this event.

The good stuff of course is that it is really lovely to share my work with others. To receive heartwarming comments in the guestbook or via email. How my journey-through-life touches other people. My work is all about that. Or at least partly.
I create because I simply have to. My life has gone that way. But the sharing is certainly a beautiful side-effect.

For the story behind this image
and more about the exhibition, please see here
I swore I won't have another exhibition. But I had already one booked. A shared exhibition with my fellow Irish Wheelchair Association (IWA) members to highlight our Abilities. I just have to be very sure that I mind myself as best I can over the next month, to delegate the jobs, to have the IWA staff and members do their share of jobs.

All will be well on the day!

After my solo exhibition, I made a plan not to plan, if you know what I mean... No plans for big creative adventures, although of course I am creating. And finding a more manageable way to be part of society -  through the written word.
Through this Blog.

It took me months to get to today. But I have arrived.

I endeavour to write more often about life (with illness) - the challenging stuff, but also the beauty that I see and experience. The raw thoughts.

As I don't follow much of the medical trials I will refer to other people's blogs for that information, or see the ME/SFS information page here.

I hope you will join me along this journey.

With much love,


Saturday, October 8, 2016

'Golden Girls' - reality of ME/CFS

This is probably the best video I have ever seen about how (some) doctors dismiss the reality of ME/CFS.

(You-tube Golden girls - sick and tired - Golden Moment

Friday, September 30, 2016

HATCHED by Corina Duyn re-hatched as E-Book

Creative adventures have a funny way to go around in spirals.
(And there I was, calling my last exhibition 'Full Circle'...)

Ten years ago I published my first book Hatched.
It was the pivotal point of my then eight year long adventure of learning to live with illness.

I truly believed at the time that when this book was published, that I could put these eight years on the (book)shelf and get on with my real life, i.e. a life without illness.

Ten years have passed since then. I have not recovered in the 'normal' sense of the word, but I am well in lots of other ways. Life is not as I had planned, but I am having a very interesting life all the same.
I write, I sculpt, I take photographs. I love my garden, love my studio, my house, my friends, life...

During this decade I had many challenges with ill health, but nothing is stagnant. Bad (energy) days do pass. Illness days do pass. Not fast or with full recovery, but there usually is a light at the end of the tunnel to be found.

So, creative spirals.

During the past decade I had several exhibitions and published three more books. Cirrus Chronicles - Landing in Ballynelligan (a fairy tale much loved by adults), Flying on Little Wings (a tiny book with words of wisdom from the birds), and most recently (exactly a year ago) Into the Light (a book in a box).
More details about all my books see HERE.

HATCHED- re-hatched E-Book 
The book-publishing-spiral in this case is that Hatched, my very first book, is now available as E-BOOK! I called it HATCHED -rehatched

For me this is a big step. To go from creating very tactile, and handmade books, to something that is only viewable on a computer or tablet...
One of the reasons is that Hatched is pretty much out of print. There are a few books here and there, but reprinting it as a 'normal' book is very expensive, and maybe this new format will actually reach a whole new audience.

I am immensely grateful to what Hatched has brought to my life. Through it I made contact with people all over the world. A very welcome 'side-effect', when living a life which is often lived in (near) solitude.

If you interested to download the HATCHED re-hatched E-Book (PDF) you can do so on my website, where there are also a few sample pages. The slightly edited book has 184 pages, full of images and very short observations. Suitable for all those who can only read for a few minutes. (Been there- done that!)

The introductory offer is €3.99.

Some reviews:

  • Hatched is one of the most energetic, generous-hearted, sharp minded and inspiring book of poems I’ve read for quite a while. No matter at what page I open the book, I find a love of life, an appreciation of life, and a vibrant sense of privilege and gratitude. … Illness has somehow endowed Corina with the ability to conduct a dialogue with reality. She turns fragility into strength, disability into freedom, and confusion into beautiful normality. Poet Brendan Kennelly
  • “Great day for a walk” – is not just a greeting, but a celebration for the human spirit. Hatched deserves an international audience, and merits a place on best-seller lists. Liam Murphy, Munster Express
  • It is beautiful. Really beautiful. It gives me courage. Dianne Mawhood
  • The lesson of this deeply personal yet emphatic diary that is Hatched is that you don’t have to get ME to embrace them. Christy Parker, Dungarvan Observer
  • This is something really special and uplifting. Interaction Magazine I found tears rolling down my cheeks- tears of both empathy and relief. Corina has shared her experiences in a simple, beautiful, and human way. Sue Page
  • Corina Duyn is living proof of the adage that you can’t keep a good woman down. Deirdre O’Flynn, Irish Examiner
The Flight Path documentary by Katie Lincoln about the making of Hatched, can be viewed here