Saturday, August 19, 2017

M.E. (ME/CFS) and the fight for rights

(Edit:just noticed that this post comes up rather scrambled on iPhone. No idea why this happened. It is fine on iPad or Computer. I had to re-edit the post. Sorry for any inconvenience. Corina. )

 This account by Dr. Myhill almost made me cry.

I have been subjected to the CBT/ Graded Exercise proposition during hospital stays, and appointments, but avoided having to actually undergoing this "treatment" See my story HERE

 The "all in your head" scenario still prevails... Prescriptions for anti-depressants are still being given... But the fight for our rights and doctors rights have taken a new step.

 This short (6.40 min) but powerful video is a great explanation of how hard people with M.E have to fight to get treatment, and to be able to avail of the right support. But also how some practitioners have to fight to be able give treatments. I did not know that many doctors have been struck of the medical councils as they have treated people with M.E.

 Dr. Myhill tells in short about the very flawed and fraudulent data of the now notorious PACE trial carried out in 2011. How the findings of this government funded trial concluded that CBT (Cognitive Behavioural Therapy) and Graded exercises were the only way people with ME/CFS would "recover".

The trail has now finally been taken apart. It has been a long battle.
Dr Myhill  is now hoping to get MPs to sign up to MAIMES - Medical Abuse in ME Sufferers - to demand a Public Inquiry into the abuse of ME sufferers over the last few decades.

 PS. have not met this doctor, but know of others who have been treated by her. 
Her videos and talks are very much to the point. No nonsense 

 Watch the video Here :

Sunday, August 13, 2017

The astonishing world inhabited by puppets

Attending the Puppet Symposium  last week was like stepping into a completely new world. And yet when I entered it, and moved about with open eyes and ears, I realised I had been part of this amazing, creative, fun, healing, and astonishing place for pretty much all my life. 

I just did not know it...

photo of Persephone Sextou and puppet Johnny Dwyer having a private moment.  Corina Duyn is holding the puppet
Persephone Sextou and puppet Johnny Dwyer having a private moment.
 (I am allowed to witness this...)

Johnny's Ancestors

While writing my paper/ my presentation for the Symposium, I looked back at the dolls and puppets I created in my life. I made dolls clothes on an Singer hand sewing machine around the ages of 7, or 8. Made my first doll at the age of ten. Borrowed doll making books throughout my teens from the library, and bought my first book at the age of 16. My first ever puppet, a clown, was created from this book. I still use the puppet body design in today's classes! Nearly 40 years on...

Fantasy Folk

Moving to Ireland saw the start of my Fantasy Folk Artist Dolls and Puppets. I had my work in shops, and has solo exhibitions. I work on Private and corporate commissions. Including the Waterford Crystal one, I wrote about a while back. A puppet/animated related work was that of Ballycardool  by Jimmy Marukami. I also taught puppet making with two young art students from Finland, and in a group home, in the months before illness changed my life in 1998.

Puppet Power

During this work at the group home with teenagers, I realised the Power of Puppets. I think there were about 6 youngsters in the group. All Very Eager to work with me. We had made the heads of the puppets and had started on the hands. One young lad of about 13 had made a clown's head. Gorgeous. Funny. Just like himself. But when he made the hands, they were closed fists.
Powerful stuff.

I still feel bad for leaving these youngsters without finishing their puppet. I was too ill to even sit up, not to mind teach. 19 years later I still want to work with them. They probably have kids of their own by now, but if they read this, please get in touch.

Moving on

Puppets made their return in a big way when I started to facilitate the Life Outside the Box Puppet project with fellow members of the Irish Wheelchair Association (IWA) in 2015. This project catapulted me into the Puppet Power World, and into that of the Puppet Symposium. I just didn't see it coming! 

Yes, I know I was invited to talk about the project. And yes, I was a little scared to say my bit amongst researchers, and speakers from all over the world. People who are involved with puppetry for years, and know what they are talking about.
As it turned out, I also know what I am talking about. 
I know the journey I made from childhood in dolls and puppets, from being an artist, witnessing the powerful ways puppets can explore challenges in our lives. I have seen it. I have lived it. 
I just didn't realize that what I have been doing in my work, especially working with others with disabilities, while living with disability myself, represents a unique experience. 

Puppetry and disability

One of the first speakers Moira Jenkins, a lawyer, puppeteer, and lecturer, talked about the UN Convention of the rights of a person with disabilities - Which by the way is still not ratified by the Irish government - to be involved in the arts. More than just participation. We have every right to be respected as the originator and creator of our own work. (Article 30(2)  Including puppetry. 
Arts as a practice, not therapy.

I was nodding like a lunatic at so much what Moira was saying. Especially when it came to those horrible terms like 'service user' which I was labeled when a member of the IWA... Also when it came to context providers not just content providers. I created the context with my project, and so did my fellow members! Proud of that.

Puppets as story tellers 

Over the two days I filled my head with images, and words, and stories, and opportunities. Some I listened to at the symposium, others via Skype while lying on my hotel bed. Thank you Emma for providing this option for me. 

I was in awe with the presentation by Andrea Markovits from Chile, who talked about the puppets and traumatic memory project. Exploring the  pain felt by the public of the past regime in Chile, the families of the disappeared, the tortured. Silent puppets. Beautiful puppets. Powerful stories.

There were speakers from Japan, UK, Brazil, Germany, Finland, Portugal, Ireland, and Costa Rica (I think).
Subjects were: Well being, Disability, Hospital and care settings, and mental health. But even within these there was such a variety of subjects.

The speakers were either researchers in the field of puppetry, for example Persephone Sextou's 'Theatre for one' with children in hospitals, to Caroline Astell-Burt who teaches at the London school of puppetry. Antje Wegener who uses puppets with kids dealing with trauma. Or puppeteers with their own story to tell. (See all names here).  I loved how Oscar Goldszmidt worked with youngster with cerebral palsy, and enabled them to manipulate puppets...

The talks that touched me most were the ones where puppets transformed the lives of their makers. Most of the time by surprise. Puppets made Emma Fisher come out as disabled. A bit like coming out as LGBT. It informed her thesis about puppets and disability, which was initially about others with disability. For some the puppets they created supported them during mental health challenges. For example Kate James-Moore, and Aaron Jean Crombe. I think it was Joni-Rae Carrack, who said 'Puppets can be both objects and subjects',  in her talk about anxiety. Kate said that 'puppetry saved her life'.

The whole experience left me filled with images, and thoughts, and questions of where to go from here? It feels like there is no going back now. No going back into my box!

black and white photo of corina duyn lifting her puppet out of the box at the Puppet symposium
To me this photo says it all:
Puppet Johnny Dwyer and myself 

stepping into life...

© Photo by Nik Palmer  of Noisy Oyster
More photos by Nik see HERE

What next?

I had the pleasure of spending some time with Marisa Latimer after the symposium. She told me about her travels with puppets. Through college, working with puppeteers, stories from Japan. Expanding on the world I kind of knew existed.
Listening to her, I remembered the exact location of a puppet theatre in the city of Haarlem, where I lived 8 years before moving to Ireland. I always wanted to go in. I never did. 
I also remembered a very vivid dream of a kind of underground puppet theatre/museum. I remembered that I had copied puppet making books from the library over 20 years ago. How I have one business card with a puppet sitting by a pile of books, for at least 19 years.
That I was part of the puppet festival during a doll making week in France the year I got ill. 

I had communications with Kate, Aaron, Emma and Perspehone. And a meeting with Moira. Which has led to the invitation to give guest lectures at CIT, and a collaboration about Disability Rights and Puppetry. And other future possibilities for my work...
It is all hugely exciting. 
I am aware my body might not (yet) be as excited as my head, but I am certainly going to take small steps into this world which has been presented to me. Loud and Clear.
I hear you!!

Puppets have been part of my life. A hidden part of my life. Deep in my psyche.
They, and me, are ready to come out and play!!

To finish this amazing week, I learned that The life outside the box project was also mentioned in a Journal..., see link below.
The puppet making classes are going well, and I have already four more students lined up.
And I am now a member of the Irish UNIMA (International Union of Puppets, a non-governmental organisation affiliated to UNESCO)


group photo of speakers and puppets at Puppet Symposium UCC, cork
Most of the speakers and visiting puppets at the symposium.
Mad bunch!

Further reading and links

Monday, July 31, 2017

Monday - a new beginning

A new day,
a new week,
a new challenge,
a new opportunity.

I like new beginnings.
They (can) scare me a little too.

Today I will be teaching my second puppet making class. Start of making the faces. A fascinating part of the process.  Dolls/puppets create themselves... they often end up looking like their makers.

Today I also have to finish preparation for the talk at the Puppet Symposium. (Putting it onto a memory stick, is pretty much all there is left to do!)
Almost there.
A talk about puppets in my life, and how illness in a way brought me to facilitating the Life Outside the Box puppet project, and all the amazing things I witnessed during the project.
still from puppet symposium talk how illness changed my life Corina Duyn
still from my talk how illness changed my life
still from puppet symposium talk 'Life Outside the Box' puppet project .Corina Duyn
still from my talk about the 'Life Outside the Box' project

still from puppet symposium talk 'Life Outside the Box' puppet project .Corina Duyn
still from my talk about the 'Life Outside the Box' project
Yes I am excited to be among others from all over the world who have an interest in puppets, health and disability.

Yes, I am a little worried too:
The logistics of travel; Working out how to best use my limited energy; Can I leave for a rest and not feel I am missing out. Staying in a hotel, and getting around (Thanks Pascale for being my PA!). Standing (sitting) up and sharing my story among this amazing line up of speakers. A little daunting, and yet I know I can do it.

Johhny Dwyer puppet ready to go to puppet symposium .Corina Duyn
Johnny Dwyer is ready to go!

For all the details of the Symposium, please visit the PUPPET BLOG where there is also a list of all the speakers and their brief. Speakers from as far as (I think) Chile, Germany, Japan, UK... and goodness know from where else.

for example:
Dr Melissa Trimingham: Puppetry and autism
Yasuko Senda: Heart-warming Smile Puppet Association
Emma Fisher: The Broken Puppet: puppetry and disability 
Poupak Azimpour: Listener dolls: a case study of women recovering from cancer
Gibdel Wilson: Puppets talk, communities listen
Aaron Jean Crombé: Self-acceptance and puppetry

A new era has begun, or just the next logical step in my story!

Talk to you soon.

Tuesday, July 25, 2017

All done and dusted

The hospital saga is finally over.
During the past 6 months there has been WAY too much emphasis on medical issues. Hospital appointments, procedures, surgery, in patient stays and waiting for scans and results...

After seeing the neurologist yesterday (a three and half hour wait in a crowded waiting room and corridor) I was told that although the MRI scan revealed further deterioration of my upper spine/neck, the spinal cord was not affected. GOOD! So knowing that, I can go back to sorting my wacky body out for myself. In the way I feel best. Away from hospitals.
The answers to my wellbeing are not to be found in hospitals...
There was a brief mention again of neuro-psychiatry but I choose to ignore that. Also some other scary sounding drug, which improves energy, and is used by guys running around on the stockbroker markets... I am not interested.

What I am interested in, is, how I can go back to being me. 
To play in my studio. To be among creative individuals. To be out in nature, in my garden, and beyond. To find solace in meditation, and silence. To explore how I can increase my movements.
observing the many bees on my lavender plant
To get back on track with my walking plan, and now I know that my spinal cord is ok, I can do some gentle exercises with more confidence. I will seek support with straightening my 'twisted' spine and neck. And maybe, just maybe, I can put a plan in place to get onto some form of bicycle... Even if that means starting with a peddle-devise placed on the floor to get my legs moving like it would be on a bike. Sitting on the duo-bicycle in Holland is still SO much on my mind.

It is just unfortunate that there was a two month delay (after being an in-patient in hospital) to be able to trust my own gut feelings. Medics around me all had emphasized the importance of the brain, neck and upper spine MRI, that I felt my life - my progress back to some 'normality'- was on hold.

Health Service Executive


I am looking forward to getting back on track.

In the creative sense I have already done so.

  • I started teaching my first puppet making class last Sunday. A class of three students.
  • And I already have three students booked in for a class starting in September.
  • Next week I will be giving my talk at the Puppet Symposium. I am honoured to be among such an amazing group of speakers from all over the world. (And a little daunted by it too, to be honest.)
  • And I have made a gentle return to working on my animation figures. Making a mould to make little hands... This is already a one year project. Two to make the finishing line?

Anne and Margaret working hard
start of making the head
Even at this early stage the three puppets
are developing their own personalities
making the base for the puppet hands 
making the base for the puppet hands

Thursday, July 20, 2017

A set of cards to support people living with chronic illness

An M.E. buddy Ricky Buchanan created this wonderful set of 'Energy-Saving Self Care Cards'. With a  few words of realistic goals for chronically ill people, even those who are housebound or bed bound, like Ricky herself.
'Energy-Saving Self Care Cards' by Ricky Buchanan

"Cards have been sorted into three categories - "Internal" cards have suggestions that are all in your head. "External" cards for things you can do in the world, and "Sensory" for suggestions that cater to your five senses.

They fit in the palm of your hand, like a deck of playing cards.

The set is available HERE. The order arrived within about ten days.
A few of the cards, including one of the blank ones
to write your own thoughts o

Maybe, if others in Ireland are interested in getting a pack, it might be an idea to order several sets to be posted to the one address. It would cut the postage costs.

Well done Ricky!
I love them.


Wednesday, July 19, 2017

Puppet making workshop

It has been a while since wrote my blog...

Writing time on the computer is limited. Like anything else in life, priorities had to be made.

As you might have read, for the past while I had to dig deep to find my balance again. To find the trust again in who I am as an artist and writer living with chronic illness.

I dug deep. Literally in the soil of my garden, and metaphorically in my being.
Sorting what could go: plants, stuff, weeds, people, thoughts, situations. I looked back at what works for me, where my life's interest are, and being (somewhat) realistic where my capabilities lie. Anyway, I know that all of this was to make space for new adventures.

The Life Outside the Box Puppet project, which I facilitated a while back with my fellow members of the Irish Wheelchair Association (IWA), is a project dear to my heart. I loved working with my fellow members. To see them grow in confidence. To explore how they could make the puppets. To be part of the laughter. The joy. To see how to project was welcomed outside of the IWA. Out in the community.

I am ready to see how I can develop my ideas further, also in practical terms. I have made some amazing creative contacts of late, who have all supported me to make this next step. The Puppet Symposium in a few weeks, is a wonderful opportunity to make valuable contacts in this new field of research. And have applied for a Arts Participation Bursary from the Arts Council.
I am stepping out of my box. Out of my cocoon.

And I am excited to say, that I am getting my studio, and mind, ready to welcome my first three puppet making students. We are starting in a few days!

Ready for the first puppet making workshop
puppet in the making... (with walking sticks)
this is how it will all begin
The Little Wings Studio

See more about my projects, and ideas, HERE

Monday, July 10, 2017

Hiding in my writing cave

I am about to hide away in my 'Writing Cave' for the next while, as I have two Art applications to fill in, and a paper to prepare for the Broken Puppet Symposium.

One application is due this Thursday.
And I only found it yesterday, but it seems to right up my street: "Arts Participation". So am going to give it my best.
The other application is due next week. It is short, and almost written: "An expression of interest for Art Commission for the New Children's Hospital in Dublin."
Then before the 2nd August I have to write, and prepare for the talk at the Puppet Symposium.
papers to write, applications to fill

All in the line of progress.
All connected!

And didn't I write the other day that you can make anything by writing...?

So, if you don't see much of me, I am most likely hiding in my writing cave.

But first today, I am going to spend an afternoon with other creatives.
Something I have not done for years, (painting I mean), but for some reason the wish to paint came up during my visit to Holland.
I try to listen to those whims!

Getting my 'travel basket' ready for the painting afternoon

See you all when I can.
Be Well!

Saturday, July 8, 2017

you can make anything by writing

I am still out of sorts
but sorting myself out

... these were the words which appeared on my diary page this morning. I am still out of sorts, but sorting myself out.
I left it at that.

I seem to be still in the process to re-establish the me in my life, after the busy and at times confusing few months. 
Clearing helps. Clearing my garden was so powerful. And am now in the process of more tidying in my house. Again... An ongoing project really. 
I seem to have the need to move things around (and in the process, moving energy around...
And to dispose of stuff. 
Tidy my books. My desk. My studio. My space. My head.
puppet Johnny Dwyer by Corina Duyn sitting on a box in front of bookshelf
Johhny Dwyer overseeing the tidying of my study.
I know that this is all in preparation for good things to come.
I also cleared some people out of my life (metaphorically speaking of course) and invited some others to join me on my journey. Mostly creative people.

So, while I tidy up my life, I am getting ready for new adventures.

To reflect on C.S. Lewis's wise words which I have written on Puppet Johnny Dwyer's travel box... "You can make anything by writing."

Writing words in my diary, sharing my private thoughts which seem to flow from my pen onto the clear space in front of me. Sharing the challenges, the joys, the hopes and desires. To make plans. All in the safe place between pen and paper. I never stop marveling of the power of this excersice.
Creative ideas come into focus. But also life in general.

I can make anything by writing.

wooden box with a drawing of a hand writing the words: "You can mande anything by writing" C.S. Lewis
"You can make anything by writing"
C.S. Lewis
Cover of Johnny Dwyer's travel box
Be well my dear friends.
Wishing you a lovely weekend!
And maybe... find a lovely notebook and most comfortabel pen, or embark on a space clearing exercise... a few minutes at the time.

Wednesday, July 5, 2017

Closing, and (re)opening doors

Yesterday was one of those days...
It started off with the challenge of pretty bad fatigue accompanied by pain. Inflammation of some sort? Anyway, the way brightened as it went its merry way.

Post arrived

I am still a great believer in the beauty of receiving post via the letterbox.
A letter accompanied by printed photos. Thanks Moira.
page from Hatched

And a letter with an appointment for the MRI. At last I have been given a landing slot and can stop circling the skies. It is even in time before my appointment to get the results from the neurologist. (I had appointment for result, but no date for test). Logic, it seems, has prevailed. Or perhaps the stern letter from my GP worked. Whatever the case, I have an appointment. I hope of course that is it 'just ME' or old age setting in, and not something else to scare me. But whatever comes up, it is already there. I just don't know a name for it.

Closing one door

To clear the way to follow my desire to teach again, as I wrote the other day I decided on closing one door, to be able to have energy to open another.
I would dearly like to find ways to facilitate puppet workshops with people and groups in them community. To reach out to people who could benefit from being involved in the creative process. The puppet project (and similar I had done, prior to illness, with teenagers in a group home) brought the value of this clearly into focus. As teaching would take a great deal of my energy, I decided that I can no longer go to the Irish Wheelchair Association (IWA) resource centre. (It is there where I facilitated the Life Outside the Box Puppetry project.) I have been going to the centre as a IWA member for a few years, but feel it is time to move on. It is not a place I can further grow. And teaching, I know, would be my one big event in the week, so I closed the IWA Resource Centre door today.

Opening a door to the past

As it happens, as life seem to happen in its peculiar ways, soon after I emailed my letter off to the IWA, a young woman from Finland made contact via Facebook. The name rang a bell... She and her friend were my students shortly before I became ill in 1998. They were about 17 at the time and stayed with me for a month to learn the art of doll making as part of their art college course in Finland. We did not have contact for at least 17 years.
So here I am, on a day when I make a firm commitment to myself to go back to teaching puppetry and Doll Art, in some shape or from, whatever is practical and workable, I hear from one of the last people I taught before illness changed my life. Sari did not become a Doll Artist, her friend Anna did. Sari sounded happy in life.

Opening new doors

So, whatever way this teaching will happen, I am ready to listen to the universe. I am ready to explore and be guided in how, and where I will continue my journey.

Tuesday, July 4, 2017


These are just a few short observations/ poems from 2001, as featured in Hatched Re-Hatched.
However, I still moments in the present time in which I can relate to them, ...  more than I wish to acknowledge. However, the emotion and the wisdom surrounding this has changed. The experience remains raw.
I know I am not alone in this...

Be well my heroes.
Hang in there.
There will be better days.
I promise.

HEAVY WEIGHT 25 January 2001

with my tired body
Lowering my head
just above
the bowl of porridge
my hand
and spoon
greatly reducing 
the distance
have to travel 
to my mouth

page from Hatched (re-hatched) by Corina Duyn 2006

15 March 2001

Nearly in tears  
if taking a shower 
would be 
a good use
of energy 

23 September 2001

door saddle 
kind of 

Monday, July 3, 2017

Puppet Power

Yesterday I had a visit from a creative friend.
She brought her doll she has been working on for a number of years, in the hope I could guide her on the next step to bring it into being.

After lunch we made it into my studio.
view from my studio
I took up position on my 'home-made-recliner-window-seat' while Pascale sat at the work table. 

the window seat- made from an old shelf unit.
It was lovely just to BE in my studio and looking out at the birds in my garden.
And to just chat about creative ideas. Where to go from here.
I did not feel the need to do any work. I did not really have the energy.

What I DID do, was to take a new Pasta maker  (see below) out of the box, to see if it really would work to make thin sheets of clay for future projects.
It did!
And when I put the thin sheet of clay in the 'spagetty' part of the machine, it made this wonderful "hair", which I deposited onto a head I had made a few years ago.

Who knows, 'it' might be made into a puppet one day, now it is sporting a new hair-do.

Playing with a pasta maker
The teaching of making puppets, and the healing aspect of this, is one of the things I would like to focus on in the near future. Preferable teaching in my studio (but open to other suggestions), so I have all materials at hand, I don't have to pack boxes, or think too far ahead in terms of what I need to bring.

This idea follows on from the "Life Outside the Box" Puppetry Project. An inclusive Art Project I facilitated with fellow members of the Irish Wheelchair Association. 

The project was much more than just having a bit of fun. It brought many of the makers out of their comfort zone, in a good way. We explored our personal boundaries and that of society. Through the puppets, we as people living with disabilities, became parts of society in an unexpected way. 
Our project explored boundaries imposed by society. And as a result, the end product- a set of puppets and a film, were seen by many: in exhibitions, at a disability film festival in Canada, in the local cinema, in many news paper articles, and on national television. See the film we made, and the project in more detail on this Puppet Blog. It brought a discussion about. Beautiful.

Also as a result of this project I have been invited to give a paper at the upcoming The Broken Puppet: A symposium on puppetry, disability and health. 

I hope to build on this puppet-power, by working with other groups of people.
Preferably in my studio- a group up to 4 people is maximum.
If interested- please let me know.

Or is you are reading this and would like to explore if I can teach in another location, and with a larger group of people, and can provide the necessary support, I gladly hear from you.

But for today, the limelight is on Pascale's doll in progress... who in a way solidified my thoughts on doing puppet workshops. Thank you!
Visiting doll 
Belly- Button!

... home again, and sitting much more upright
with more confidence and pride.
for illustration only, this is the
pasta maker I mention-
a brilliant tool for the studio

Sunday, July 2, 2017

The root of sorrow is craving, but there is always hope to see the bigger picture

The root of sorrow is craving.

Antony de Mello - Awareness 

potbound Aloe Vera

Three weeks of recovery from the 'hospital-Holland-marathon', and I seem to be finally completing the road to re-connect with the person that I thought was me.  Both the hospital and travel had a rather big impact on my mind. On my beliefs. On my physical, but also mental well being.
I became aware of a sense of loss. I realize that the sorrow, the sense of loss, were based on what I perceive I do not have.

"Ghosts of lives you might have lived ... If not becoming ill ..."
Hilary Mantell. Learning to talk.

I wanted to be like my siblings, who are walking, cycling, working, able to stay up late and rely on their working brain, be sociable, and not having to go to bed at the same time as the 4-years-olds... I became much more aware of my life with illness.  Of course they have their challenges too. Everybody has. I just needed a little time to make sense of it all again. To put 'everything' back into perspective. I needed to hope again. And to see the bigger picture.

"Waiting with a resilience of spirit, in the certain knowledge that, 
if we wait long enough and if we are true to ourselves 
then things will make sense, is waiting in hope."
Sister Stanislaus Kennedy. Gardening the Soul 

The happiest place I could be these past few weeks was in my garden. Touching the earth. Grounding myself. Clearing, re-arranging my garden and my thoughts.

"If we lose touch with our sources, we are in danger of losing hope. 
That is why it is so important to stay close to nature, to listen to the trees and flowers, 
potatoes and hedges, shrubs and bulbs grow in silence.”
Sister Stanislaus Kennedy. Gardening the Soul 

Although yesterday was mainly spend recovering from outstaying the welcome in my garden the day before (weeds are more difficult to remove from gravel than it is from soil... trust me... ) I also had the great fortune to have a lovely meeting with an other creative being.

A creative meeting about possibilities for my work. Where to go from here.
To see the bigger picture of years of creating, and learning. A meeting in which minds were aligned, and experienced support, from a clear, open and honest mind. A chat which gave me hope and direction, and in which I saw my work through someone else's eyes and experiences. It also brought a possible new meaning of the project I have been working on for over a year. I am so glad I did not cancel that meeting because of the challnges of my body that day!

small figure in cocoon, sculpture by ME/CFS artist Corina Duyn
Life-Dance - work in progress

I might not be able to walk much, or cycle, or stay up late, or garden to my heart's content, but I have hope. Hope with a capital H. Which is ultimately linked with Trust.
Trust that all is well. And that I can see the biger picture of my life as it is.

I am grateful to have spend so much time in my garden these past few weeks. To reconnect with nature, with Mother Earth.
And to have taken the time at making sense of own little world again.
To observe what I value most. And... where I don't want to be. And where I can possibly go from here. To have reconnected - even it is just through talking about- and not quite doing- with my creative life.

Grateful to have taken time to reconnect with me again, not just with the capital letters M.E.

I truly hope that you, my dear readers, are well. 
And are finding hope, with a capital H, in your lives.
Thank you so much for your continued interest in my musing.
Be well.

Tuesday, June 27, 2017

Keep circling until you run out of fuel...

On the last day of my planned 5-day-hospital stay in May, my neurologist gave me the analogy of 'airport landing slots'  in terms of getting the requested MRI done. If you miss your slot, you just ahve to keep 'circling'.

lone seagull in white sky
keep circling until you run out of fuel
At the time of discharge, I was told that I would be getting an outpatient appointment for this MRI, and be seen by the neurologist in 6 weeks time to discuss any of the findings from my stay and tests.
Of course, this is daft (as I wrote in that same post): "... It blows my mind that one is given an inpatient stay because it is so hard to get tests done via outpatients. And then you're an inpatient, hugging a bed for 5 days, they ask you to come back as an outpatient ..."

But what choice do you really have?
Other than speak up, or take back control.

I was patiently waiting for these appointment to arrive.
I did get an appointment to see the neurologist in July.
I also got an appointment for a Nerve Conduction Test ... which was already done while in hospital...

As I did not get an appointment yet for the MRI, I rang the neurologist secretary again. Friday, and yesterday.

The telephone conversation brought me close to tears. 
Tears of utter disbelief.
Tears of anger.
Tears of having to deal with an incompetent "health" system. 

I was let to belief that I made up the MRI request...
There was no mention of an MRI request in the discharge notes, according the secretary.
So I must be wrong.

I know she is only reading the notes. She did not treat me while in hospital.
But somebody screwed up. Somewhere along the line.
I am a writer of great fiction, instead of non-fiction, and I made up the stories I wrote about my 5-day-stay. See links to these at bottom of this page.

I told her of the neurologist and his team's attempts to get this scan done; their responses to the waiting times; the nurses constant ringing the MRI department; the requested needle (not being) in my arm, the physio in the community reading the letter from the hospital, which included a note about the upcoming MRI... etc. etc.

I am so utterly done with dealing with a sick "health" system,

They make me sick.
They make me depressed.
And then they have 'won', as they can say that I am ill because I am depressed...

So, will I keep circling- until I run out of fuel * and crash - to get this MRI?
Or will I safely land in a world which I know and understand, and stay put in my garden, in my house, in my studio and with people who do understand me, and support me...

I was ready to cancel any upcoming hospital appointments, and live the way I feel is best for me. Trust me, this does not involve hospitals...

Had an appointment my GP this morning (was already booked before yesterday's frustration).

She was appalled at the (non) treatment. Of wasting my time. Their time. And tax-payers money (to have me read books for 5 days). But unfortunately these incoherent hospital antics are NOT uncommon. She spends a great deal of her time chasing hospital consultants, and organizing appointments for tests. Which should have been done/organised by the hospitals.

She is making her annoyance known to the neurologist, by phone, and if no luck there, by letter.
She did advise me to get the MRI. Just to be sure.
And reassured me that I am no where near being depressed... 
Angry? Yes. Upset? Yes. But not depressed.
At the anology of "keep flying until you run out of fuel...", she responded: 'until you end up in A&E, and then you get tests done very quickly as they want you out of A&E!

Incidentally: The word Patient:

a person receiving or registered to receive medical treatment.
  1.                        synonyms:sick person, casesufferervictim
  1. able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious.


Do I need to say more?

Hospital stories:

* Thanks Joan B for the title!

Monday, June 26, 2017


... from Latin retrahere ‘pull back’ 

For the past few days
I had the great need, 
to retreat 
from the world.

To clear space
in my mind.

I found solace
in my front garden

Connecting with the earth
clearing weeds
cutting back
making space.

A few minutes at the time.
Taking plenty of time
to watch the snails 'moving house'
as I unintentionally 
disrupted their world.

My apologies.

Today, I was grateful
to connect
with the earth
when a bizarre telephone conversation
with a hospital staff member
brought my sanity
into question.

Sitting on my small crate
under the apple trees
pulling weeds
brought my mind back to
trusting my own thoughts.

Nature is healing.