Great adventures from the confines of my house

Life can be curious.

The past month or so, I have been rarely outside the door.
Twice to go to hospital appointments, once to the library, and once to Dungarvan, two weeks ago. An hour buzzing around on my scooter through two shops. Sitting in a cafe waiting for my lift to bring me home again, I had a great difficulty to walk from the chair back to my scooter. About six steps?
It had taken many false starts to actually get out the door, so back on my couch at home, I was pleased I had done a 'normal' thing on a normal Saturday.

While in recovery mode, I received a message via Facebook from a lecturer at Nottingham Trent University to invite me to give a talk at a puppet festival in March ...
Sure! Great!
I nearly got up to pack my bags there and then.

The freedom of my mind...

I did wonder if my brain - my mind - is amazing, or deeply flawed ...

Here I was, ill from one hour on my scooter, a total of about two hours outside my house, and yet I did not see any difficulty with the prospect of going to the UK. Or even to Canada next summer. Another invitation to talk about my puppets...

I know I can do it. I know I can go to the UK. It does however require a lot of planning.

I made it to the family reunion in Holland during the summer. Tough on my health, but so worth it.

The journey the puppets are bringing me on, is just to amazing too dismiss.

Puppets, ME, Disability, health, are all part of my story. 

Although I rarely get outside the door, I am reaching people far beyond my wildest dreams. As if the strings of the puppets are bringing me out into the world again.

* There are contacts with some amazing women who, behind the scenes, are making the experience of life with ME in today's Ireland to the people who need to hear it: Politicians, HSE staff. Researchers, Hospital consultants, OT's, Social Welfare, the public who still believes we are just a little tired...

I am in awe of the power of this very small group. 

* Contacts too with other creatives, who encourage me to keep going. Who trust me to share with them the art of making puppets. Or trust in the creative process in general.

 * Contacts with readers of my books. For example an email from a mother of a young woman severely ill with ME.  ... As I try and motivate and stimulate K to use her sore eyes more, we started putting a new picture in her room each day for her to look at and enjoy. ...  we have been using a new nature picture from the Into the Light box each day.  Her favourite so far has been raindrops hanging from red buds. That one has stayed in her room well beyond its allotted day as she loves it so much... 

* Contacts with puppeteers from around the globe.

* Being supported by friends and family in all sorts of kind ways. Touching each other's lives. Learning from our varied stories.

* And being invited for a radio interview with Bernadette and Stan Phillips on their World in View program. Exactly a year since the interview during the Dis ability ... This Ability Exhibition, which perhaps was one of those pivotal steps in my own adventures of stepping out of the disability/illness box with the help of my puppets...

Listen to the interview here 

(about 15 minutes long)

And in the next few weeks there are more adventures, for which I do not have to leave my house.

• I have a meeting with Senator Grace O'Sullivan to talk about ME, Disability and Puppets. Grace gave a very passionate talk at the Dis ability ... This Ability Exhibition exhibition last year.
• On Friday 1st December Cora Fitzgerald's Cocoon Life Website will go live. And I have the honour to be their first guest with a (pre-recorded) podcast.  'Cocoon life is a website about inspiring Journeys, Life lived With Purpose'.

• 

  image /text for the Cocoon Life podcast recording
  

• Also on Friday 1st December, the special version of the Life Outside the Box will be screened on Irish National television. RTE 1 6 pm, during the People's Angelus.
• On the 8th December our puppet film will be shown during the Together! Festival in London.
• I will be going out to meet prospective new readers during the Villierstown Craft fair Sunday 26th November!

Phew.

So, although life can be hugely challenging at times, it is also amazingly rewarding. And curious.

Thank you ALL for coming along on my adventures through life.

I could not have done it without you.

Don't forget the sale which is on at the moment on my website and at my studio. 

And during the Villierstown Craft fair Sunday 26th November.

20% discount on books and prints during November, 10% during first two weeks in December.

 

'Reflection' puppets are ready to face the world

"Suddenly" my 'Reflection' Girls are done
(apart from attaching their strings to the crosses)

     

They went from this about 6 months ago
(one head made 4 years ago)...

to this...

to this...

to this...

becoming impatient...

At every step in the making, painting, and dressing up, they took on more of their personalities.

They talk... or so it seems...

According to Christine Fenton, the girls are discussing travelling to the the screening of 
Unrest in Dublin. 
A film about the realities of life with ME
Screening at Trinity in Dublin 9th November
and also at the Cork Film Festival 19th November
and as far as I know it will also be screened in Galway. 

Further reading and links

• For information on puppet making classes, please see HERE
• The Reflection Puppets will Dance, with the help of Artist Dominic Fee
• Puppetry and Disability
• Puppets and my life with M.E.

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.

links:

• 'Energy-Saving Self Care Cards' website
• The Facebook page 
• To order HERE

Tired

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

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

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

WATERSHED
15 March 2001

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



DUCK OUT OF WATER 
23 September 2001

Negotiating 
door saddle 
kind of 
tired

Responsibility and will power

We are not responsible for our illnesses, we are responsible to them.

Kat Duff - The Alchemy of Illness 

Morning all,

I hope this find you as well as well can be.
I am a little too tired to write much today, but I would like to leave you with a page from my book Into the Light to ponder over. And suggest some further reading, see below.

When illness 

persists

we are often held 

responsible

as if we lack the

willpower

to recover

We should 

simply 

think 

we are well

Thereby disregarding 

our reality

As if thinking

we can climb that stairs 

will actually get us there 

Further reading and links:

• And as the top quote is from The Alchemy of Illness by the brilliant Kat Duff,  I would like to suggest that you head over to 'The Offerings from the Well Spring' - a wonderful blog by Therese Doherty who writes here about the Alchemy of Illness 

dreams and M.E.

Throughout the years of ME I must say I had some

Very entertaining 

and at times rather peculiar dreams

These are a few words 

from the early years- or nights

A page from Hatched

This is a page from Into the Light

In my dreams

I swim

run

climb mountains 

or am back at work

A life full of possibilities

Or

I am confronted by 

obscure obstacles 

when negotiating

the road with my 

wheelchair

Which leaves me 

searching

for a place to sleep 

at the moment of 

wakening 

...........

That was the kind of dream 

I had last night...

I was too tired going to bed, 

so lead a dubble life, 

and feel even more tired 

after awakening...

We need to tell our story- revisited

Last year I wrote a story about M.E. 

About being sent to a psychiatrist.

About the Media.

About the frustration of incorrect reports.

About giving the wrong people airtime.

We need to tell OUR Story! 

As ME Awareness week 

and the Millions Missing Protest in Dublin 

on the 11th May is almost upon us,

 I decided to reshare this story. 

WE NEED TO TELL OUR STORY can be FOUND HERE 

Sample page of "Into the Light" by Corina Duyn 

Sample page of "Into the Light" by Corina Duyn 

Millions Missing Event in Dublin

Reference Page with post links about the Millions Missing Protest 

at Government Buildings, Dublin, Ireland

11th May 2017. 11 am- 3 pm

(will be updated regularly, so please call back)

General information about the Event

• Brief details about the event and list of politicians who agreed to meet us Website page (sorry, no longer available)

• What it takes to organise an event when most of us are ill

• Flyer with information about M.E.

• A comprehensive document compiled on behalf of The #MillionsMissingDublin Event Campaign about the situation of people living with M.E. in today's Ireland.

• For this Information leaflet in PDF format, please contact Corina
• Photos from the Event 

• Reflections on the Protest by Joan Byrne I have some hope, finaly

Personal stories by Irish people living with M.E., or their carers

• Camilla Cruise: from my bed to the Dail Gates
• MEme is ready for battle

Some other related ME. and ME awareness Stories on this blog

• We need to tell our story A response to false information on national radio

• M.E. What is that? A question about the lack of knowledge of young doctors in our hospitals

• M.E. to be highlighted at the next Intern tutorial A response from a hospital

• Click on the "tag" ME for blog posts by Corina Duyn

Malious the Great. The voice of M.E.

I was looking for a particular story I wrote about a battle to get bulbs out of a planter pot, years ago. But I found  "Malious the Great. The voice of M.E." in stead. Thought I'd share it with you...

In April of  2007, my diary writing took on the voice of the virus that attacked my body in June 1998. Its attack left me seriously ill and disabled. I would like to let the virus speak and learn from what it has to say. Below are the direct, unedited first few paragraphs of the writing that “appeared” in my diary.

image of a virus

1 April 2007

Malious’s story.

Bored to the gills with spending time alone, I ceased the opportunity to play a trick on the young woman walking along the path. While she photographed the sheep in the adjacent field, I ran quickly to the single huge tree in my paddock. As luck had it, she entered my little patch to photograph “my” beautiful beech tree. I appeared from behind the tree and frightened the life out of her. What fun! She ran around and around the tree, trying to outsmart me, but hey, I am strong and fast and she was in MY patch! My mood from looking for a bit of mischief soon turned into serious business.

When the game began, during that memorable summer of 1998, my opponent did not recover from that first fright. Having a huge pride and believe in my expertise in this game I strategically choose to invade a part of her brain. She became so ill that she was afraid to go to sleep that night, in case she would not wake up again. 1-0 for me!

The friend she was staying with suggested seeking medical help. The poor innocent creatures! I could have told them- but did not - that nobody in the hospital would recognize me: the mysterious ‘Malious the Great’! Nobody believes in fairy tales. Nobody believes I exist! I really started to enjoy the game we had entered. I had a completely free playing field!

The few days in hospital were fun. My “host” if I may be so candid to use this label for the young lady I invaded, did try to level our score, with telling the medical staff that I did exist. That the symptoms, of not being able to deal with lights, and noises, to be unable to walk or even to sit up were real and not imagined. At some point a doctor got really interested and I thought the game might be over soon. But no, my host was sent home after 4 days with the diagnosis: “All is well!” 2-0 for me!

She tried her best to believe the medical staff. They must be right; they are trained professionals. “She was extremely tired, but maybe all she needed was a few days off, a little holiday”. The fool!  I was greatly relishing the results of my invasion into her body; I was there to stay. When friends came to visit, I made it impossible for her to sit up for longer than 5 minutes, or to follow the conversation they were having. She needed to acknowledge me, so I made her lie down in bed for long periods of time and made her focus on me! Stubborn as she is, she tried to live a normal life as possible. One day, my host tried to walk across the street to the supermarket to buy some groceries. I let her go there, sure I am not the worst….. But on the way back I played a favourite trick of mine, keep her on the footpath, unable to move, while the road was clear for crossing, and made her walk when there was traffic coming. We escaped death. I was not ready to die this soon! Of course this episode made her go back to the medical profession, this time to the G.P. He did some more tests and did utter the words of post viral fatigue syndrome, which he said was not the same as M.E. Good man! The blood test performed came all back negative, She was deemed healthy! 3-0 for me!

My host moved to another friends house for the month of July. She was supposing to care take the house in the country, when her friends were on holiday. The G.P. did not think this a very suitable place for my host to live, as she would be on her own, and was unable to really mind herself. But little did he know that she was not alone…. I was very much keeping her company. I kept her awake every night for a month. Every night She would go to bed tired, but unable to sleep. I loved that, I loved listening to the radio and hear her talk to her good friend E. and discuss her life in the past and her life with me! However, She still did not acknowledge me. I told her to rest all day, what does she do? Goes for a walk every day. Well, the one night that She got really brave, and walked the full circle with her friend, I made her feel my presence. I made myself so heavy and injected pain in every part of her body. I am in control sweetheart! Still no sleep that night though! During a phone call to a friend in Holland, she became a little more aware of my relations, one whom had invaded her son for a while. She listened intently and felt some relief, that the effect I was having on her, were not imagined. 3-1, I am still in the lead!

Acceptance

􏰚􏰑􏰧􏰖􏰋􏰄􏰉􏰊􏰍􏰅􏰄􏰁􏰆􏰅􏰘􏰆􏰊􏰄􏰒􏰏􏰅􏰉􏰘􏰒􏰍􏰆􏰅􏰄􏰂􏰅􏰟􏰄􏰅􏰄􏰁􏰆􏰅􏰄􏰃􏰖􏰄􏰁􏰗Adjusting the mental image to fit the truth

Anastasia Palmer - Dear Stranger

page from Into the Light 

Acceptance of symptoms,
of limitations, of new realities
With all it's ups and downs, as acceptance is never a one off event
has probably the most impact
on well being during illness.

I find that when I accept whatever is happening, I can let it be, and find an ease I do not experience when I keep 'fighting'.

This does not mean that I give in to illness.
It means I finds ways to live with it.
Release its hold on my life.

In a strange way, it gives peace.
I can get on with all that is good in my life.

reflection from  Into the Light :

Being able to name your illness 

adjusts its hold on your life

Your symptoms are real 

you are not alone

However

Acceptance of your new reality 

is an ever-changing 

ever-challenging entity 

We learn from many life events. Including illness

I am not what happened to me. 

I am what I choose to become.

Carl Jung 

I am not up to much writing today, so I will leave you with a page from Into the Light  to ponder about. (Kind of like "here is one I made earlier...")

(My words on the page)

We learn from many life events

Including illness

Reconstructing our lives 

we find new ways of

Living

Understanding

We find new 

Interests 

Passions 

Projects

The experience 

of illness

can

become meaningful 

by the creation
of a new
sense of self 

Links and furhter reading 

• Into the Light is a book with loose sheets, with reflections on life, and is available form the web-shop, in various version. (The image above is showing both sides of the page)

The power of creativity

"Using creativity to cope during poor health is a positive response to a difficult situation." 

Tobi Zausner

The space clearing of my studio is continuing. 

All of the older work I had put up for adoption are going to new homes, where they will be loved once again.

The big jobs for which I needed help are done. 

I would like over the next week or so, to sort materials, and other collections of "stuff".

(every creative person will know what I mean by that...)

I feel lighter.

I like going into my studio again.

I feel a sense of ease.

A sense of overall well being.

Even though my body is in pain, and I am tired, I am actually feeling well.

My mind is filling up with creative possibilities.

This feeling made me think about the power of creativity.

And this book When walls become doorways – creativity and the transforming illness, by Tobi Zausner, came to mind.

I read, and used this book for my own Into the Light Artist book.

Throughout the writing of my book, I had great support from Tobi. She had given me permission to use quotes from her book, and emailed me often to follow my process. It is unlikely we will ever meet in person, but she was hugely helpful in encouraging me to keep going with my project, when I was very close to giving up.

Corina has a great capacity to help others with her work.

Tobi Zausner PhD, Author, Research Psychologist and Clinician 

Creativity is such an important part of my life. My life with illness.

I strongly believe that if I did not have my creative mind, I would not be as well as I am today.

Maybe I would not even be alive anymore. It is that important.

Creativity helped me to understand my new life. 

Helped me to explore the boundaries dictated by illness.

It allowed me to experience freedom.

Nobody could curtail the freedom of my mind.

I played with possibilities.

I was able to free on paper.

I could fly that kite.

I could fly.

I learnt so much.

And creativity became my way to still be part of the world beyond my walls.

"when walls become doorways..."

Some quotes from When walls become doorways – creativity and the transforming illness. 

By Tobi Zausner, Ph.D. 2006 Harmony book US

“In artists, the passion to create generates a will power strong enough to defy the worst disease."

(Surgeon Philip Sandblom)

"Artistic projection is a powerful experience because the work of art 

becomes a kind of virtual reality for artists." 

“Turning to creativity in response to illness gives us an enormous return on our time and effort. 

By taking our minds off distress and redirecting our attention to work in front of us, 

we lessen the experience of pain." 

"By compensating for what is lost due to illness, creativity restores a sense of wholeness 

that can produce a feeling of well-being comparable to restoring wholeness in life."

Be well.

Be creative.

In whatever way is doable, and interesting for your own personal circumstances 

Links and further reading

• my first book Hatched- now available as digital download shares a lot of these early creative adventures to re-establish who I was- or became- due to illness ME/CFS
• Into the Light my most recent book
• list of other books I used for Into the Light