ME/CFS to be highlighted at the next Intern tutorial

... you might remember how I - once again- had to explain ME to a hospital doctor? As I mentioned  in the Blog  post  "M.E. What is that" last week, I had filled out the hospital's online comment form. 

The Hospital's Complaints Co-ordinator responded by email: 

( [...] is where I edited out the name of the hospital- the respondent, and the name of the consultant. If you would like to know- please send me a message) 

"... Firstly, on behalf of the hospital I wish to say sorry that you were unhappy following your consultation at the hospital.
I am aware you attended [ ....] Outpatient Clinic on the 19th October 2016. Can you advise if your email is referring to this attendance and if so do you wish to make a formal complaint about the doctor who attended to you?
[...]
I await you response...
[...] "

My reply:

[...]

In general I am not unhappy with the care I received at the clinic on the 19th. It is more a general thought and disappointment that in 2016 one still meets doctors who are not aware of M.E. Also known as CFS

It is disheartening to say the least.

"ME is a serious and potentially disabling chronic physical disorder, affecting up to 12,000 people in Ireland. Of that number, approximately 25% of those would be considered to be severely disabled, rendering them housebound and even bedbound and leaving the individual dependent upon carers for their everyday needs.

ME has been formally classified by the World Health Organisation as a neurological disorder in the International Classification of Diseases (ICD) since 1969, although history has shown that this classification does not suit everybody. The renaming in the US of ME to Chronic Fatigue Syndrome (CFS) has led to loosening of the criteria for diagnosis and inconclusive research studies."
See http://www.imet.ie/ for further details.

Maybe this condition can be added to teachings at the hospital, to prevent other people living with this debilitating condition having to spend time explaining their underlying illness, which in my case (and perhaps in many others) most likely contributes to the problems I am experiencing in my health, and for which my GP had referred me (back) to Dr. [... ] clinic.

[...] 

Hospital Complaints Co-ordinator's response:

"Many thanks for your response.

I will forward a copy of your correspondence to the consultant in charge of the none consultant hospital doctors (NCHD’s) for highlighting at the next intern tutorial.

I trust the above will address your correspondence. Once again on behalf of the hospital please accept our apologies and thank you for your feedback."

[...] "

Stepping out of the box... © Corina Duyn

Perhaps this communication will make a tiny bit of a change in the right direction?

Best wishes to you all

The Guardian of Indi-Authors

Last Tuesday I travelled to Dublin (with support from Jane- thank you!) to attend the first ever

 Carousel Aware Prize for Independent Authors (The CAP Awards) Gala evening.

And what a glorious evening it turned out to be.

Carolann Copland- the Guardian of Indi-Authors

To my great delight and pride, my Into the Light book-in-a-box was shortlisted under the non-fiction category. See my post about being shortlisted here.
In short, the Carousel Create competition was to celebrate those writers who self publish their books. All proceeds went to Aware, an Irish Charity who educates and empowers people to look after their mental health.

What a 'goosebump-creating' combination: Writing and mental health awareness.

Getting to the event is a story in itself, but more about that on another day... (see HERE)

The Gala Evening was held at the Teachers Club in Dublin. Most of the shortlisted authors were present, as where a lot of their supporters and others interested in the written word.
The room was packed and buzzing with the excitement, and nervous anticipation, of the short listed authors, as well as from the thought provoking speeches about mental health.
It was quite amazing to hear how many people are in some way touched by mental health issues. Gerry O'Brien from Aware, as well as some of the authors and judges all had stories to tell about how mental health features in their lives or communities.
Of course there was lots of talk about books too. And about publishing. And announcing the winners of each of the categories:
Zenji and the Muzzy Bugs By Aisli Madden (Children’s Category)
Death’s New Lease on Life By Brendan O Connell (Young Adult Category)
Do You Like Oranges? By Kevin Doyle (Short Story Anthology Category)
How to be a Perfect Farmer’s Wife By Lorna Sixsmith (Non-Fiction Category)
Her Secret Rose By Orna Ross (Novel Category)

I am so glad that Carolann Copland had this brainwave about a year ago to set up this new award. Carolann is an author in her own right, founder of Carousel Creates.

Although I was not the winner in my category, I am immensly proud to have been part of this exciting new journey for independent authors.
We are all winners.
The writers - the committee- the judges and Aware!

My deepest gratitude to Carolann and all those who made this happen.
To me Carolann Copland is the Guardian of Indi-Authors!

Roll on next year's competition and events!!

Carolann Copland - Guardian of Indi-authors
with Tara (?) finetuning the last details before the event

Carousel website
See my post about being shortlisted here
To buy a copy of Into the Light, see here

The before- and after  see here

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.

Sad.

"M.E., What is that?"

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!

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

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,

Corina

'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