Thursday, May 25, 2017

'Speaking' Different languages

6pm. I am sitting by 'my' window again in the hallway.  A temporary routine.

It is amazing how quickly one can become part of a new system. The word 'institutionalisation' comes to mind. Food appears at odd hours. The day finishes at half 4, with our 'tea'. It is a long night from then on.
But I can look back at a day of 'some' progress.

I was seen by the Physiotherapist at 9 this morning. We had a long chat, and short walk. The question  "Does the pain cause you stress?" unsettled me a little. Maybe I am just too sensitive towards the notion of disbelief of M.E...?

In terms of the back pain from the recent surgery, she explained that there are pathways of pain which stay in the body after surgery. The brain will take a while to realise the pain is no longer there. Interesting.
I told how the pain in my back is very different from before surgery... and that my body/ muscles do not like to be messed with. The surgery was invasive. GP suggested bruised ribs from all the pressure put on my back. And that the growth was cut away from muscles where it had been stuck to for years. Since the surgery there is a sharp pain. Nothing like before, but I truly belief that once my back has healed the pain will be a lot less. It will just takes time.

I also told her of my experience during Meditation, when I 'scan' my body and at times can release blockages of pain.  At present I can not 'warm' my 'cold' right arm and release the numbness of my little finger and ring finger. 
In this case I think we spoke different languages...

The physiotherapist did not return later in the day, (as I perhaps mis-understood she would) to set out an exercise plan with me, to gently try to increase the strength in my arm again, and make improvements in my walking.

The neurologist stopped by too. He is a kind and understanding man. Of course I forgot what I meant to ask him, but we did have a good chat. I am booked for MRI, but no promises can be made it will be done while I am here. I hope it will happen...

Then I had the pleasure of being visited by the Occupational Therapist. (O.T.)
He stole my heart. 
A man so full of wisdom, kindness and understanding.
He listened, and advised. He observed and shared. 
It was so good to see that my reality was completely and utterly understood. He saw in me how I can support others. How I get on with life despite illness. And understood that this might be a confusing image for some in 'society', as I don't conform to the popular notion of what a person with chronic illness does...

He gave suggestion on preserving energy - learned from years of listening to and observing his patients.
I felt reassured.
Back to medical stuff, the O.T is coming back tomorrow to give me a splint for my right hand. 

So, it was a relatively busy day at the office.

Roll on tomorrow.

And due to my rest period, I feel less overwhelmed with the prospect of next week's travels. For now.

Wednesday, May 24, 2017

To Paris by hospital bed

Day two of my Hospital-Holiday.

In the olden days (1970/80's) this hospital was nicknamed the Wilton Hilton. Well, I would not go as far as to say that I am staying in a luxury hotel, but I can say that so far I have been able to rest a lot. A lot!
(And trying to think about the likely possibility that there are people lying on hospital trolleys in A&E, desperare for a bed...)

Although my 5 day stay was booked months in advance, with a clear plan, and vision of what needed to be done, nothing happens here until you are actually in the door.

On Monday, physiotherapy, occupational therapy, etc were requests, but so far I have seen no one. Apart from a dietician who could not really help me (asked about FODMAP diet- story for another day). And had chat with neurologist -registrar. Who almost breached the ME -CFS divide. Almost.

So, I have been spending another day resting, reading, meditating, eating and sleeping. And having chats and laughs with roommate 'JK'.
(I am still in the same room as yesterday Happily.

JK. told me of a day-dream he had.
In a nutshell: He was lying on his hospital bed, and made his way out through the door, into the hallway, and onto a busy street in Paris. Only by seeing my face on the other side of the room, did he realise where he really was.

The joys of escaping our confinement in location and bodies, brought us much laughter. Possibilities were, and are, endless!

We also talked about books, and audiobooks, and the NCBI extensive audio book library

I looked online to see if I could find a free downloadable audio book for JK today.
"What is your favourite author?" 
Ahhhh, now that is difficult ...
Favourite book, topic, genre?
There were just way to many possibilities.

But the one author, or book which my roommate desperately tried to remember, and not just today, but for days, would simply not come into that part of the brain which can spew it out of one's mouth. (Remember Brian Brain post of a few days ago?) 

Having very little else to do, I suggested to do a "Google-Quick-Pick". We might strike lucky.

Key words decided upon were: American author 30's, 40's novelist 

We settled on the page with Top 20 American novelists. I read them all out. J.D. Salinger gave some glimmer of recognition. 
Then: "Yes! That is it! The Catcher in the Rye."

JK. Laughed. We both laughed. 

Aware also, of these amazing little moments, when you are in the right place at the right time
Even if that meant being severely debilitated by M.S., and for me being less debilitated by M.E, and both being stuck in a hospital bed.

None of that mattered. 
None of that had more importance than this gorgeous moment of knowing.

Roll on day 3.

Ps. I wrote this while sitting in my wheelchair by an open window in the hallway (6pm).  When I wheeled myself back to room 2, I saw this in the floor: a sheet of stickers with the words 'physiotherapy'! 

A sign?  😀 

Tuesday, May 23, 2017

The peculiar world of hospitals

Short report from my first day in room 2.

Just after a cold bowl of porridge, which was probably made with milk... we'll see how my body reacts to that. 
Thank goodness I had brought a pear, and ground nuts & seeds with me to bring the breakfast to the status of nourishing foods. I swapped the tea for a pot of boiling water (to add my camomile tea), and leave the processed bread for the birds.
You certainly don't get better from a hospital diet!

I have learned my lessons over the years and pretty much arrived here with the kitchen fridge and cupboards in tow.

All went well yesterday. Although very little happened. 
The good part is that I did not have to ambush anyone yet with my large file of M.E. related information, or had to conjure up the image of Joan and her hammer...
Joan is the writer of the comprehensive M.E. information leaflet ((See million missing Page) and she appeared in a hospital related dream last week.  During a text-message communication which followed she wrote: '... Just make believe I'm sitting in the corner when you're talking to them and waiting with a great big lump hammer if they say anything stupid..." 

When I arrived the bed allocated to me was not available until later that day. But they gave me a bed in a two bed ward, shared with a gentle man.  But as is was not going to be my 5 day home, I could not unpack my bag (and kitchen).  
It is interesting how one (me) wants to take ownership of these few square meters. To make this cocoon mine. But I couldn't. 
I stayed an alien in that space. By 7pm I was told it could be nine by the time I get moved. I hoped I would be well on my way into Lala land of sleep by then. 
I was allowed to stay and just took out a few belongings.

Soon after I arrived in the morning, I was seen by a kind young doctor.
M.E.? Sure. Pain, and all the peculiarities of my aligning body were jotted down and seemingly not frowned upon.
I would be seen by a physiotherapist, OT, and probably some investigations will take place. But that would be up to the neurologist himself, whom I hope to see today. Or soon?

And that is where my excitement ended.
The rest of the day I spent lounging on my bed. Listening to meditations, chatting with my roommate and his sister (whom I 'knew' from a life before M.E).
By 7pm I was finally officially admitted and received the coveted wrist label.
.... which I keep looking at to see what time it is... it is not my watch- I keep reminding myself.

Another one of the peculiarities of hospitals is that I lost the independence on taking medication when I require it. I was 'hanging' for sleep last night but had to stay awake in order to get pain meditation to get me through the night.
The tablets were in my bedside locker, but I have no ownership of them.

I slept well, having followed my home-routine of listening to Healing Sound. And after that inserted waxy ear plugs in my ears...

So now.
Boot camp to start today?

Be well my friends.

dramatic curtain display left by the visting doctor

Monday, May 22, 2017

The unpopular notion of chronic illness

Chronic illness does not fit the popular notion of how illness proceeds:
you get sick, you go to the doctor and get some medicine, and wait to get better. 

Cheri Register - Living with Chronic Illness

To get me started on my few days in hospital this thought might be an appropriate one

Page from Into the Light 

without a clear 

dragging on for years
without clear diagnosis
or streamlined treatment plan 
challenges the health care system 
and society in general

may be experienced 
as unreal
even by the patients 

Further reading, with other hospital-related-thoughts:

Sunday, May 21, 2017

Rain, heavely rain

Bit late today...

I plugged in my iPhone to the computer to upload the rain video, and ended up sorting photos. I made some folders so I can show my family my-life-in-images during the reunion. I got a bit carried away.
Energy gone, so was time for a break before I go to write to you all.

Then a phone call... you know the kind of day, it just runs away with itself.
All good!

I am all set to go on my 'merry way' to hospital tomorrow. Well nearly.
Bag sorted, house sorted, Sally sorted...

Yesterday I made it to the Lismore Pop-up-shop to get my fill of books for the two 'holidays'.
On the way back I got caught in an almighty shower.

It is not often that I am outside in the rain, so I actually enjoyed it.
The sounds, the energy, the 'holes' it created in the puddle on the road.

The rain ran off my umbrella onto the back of my scooter seat, resulting in a soaked bottom and hip.
 The joys of real life!

I will try to write from my hospital bed, but I am not sure if I have wifi to do so.

Be well.


Saturday, May 20, 2017


I love, 
taking photos...

My camera is most of the time within reach. On the table, where I spend a lot of the time looking out the window, watching the birds and the world go by.
sparrow feeing its young sitting on a window box
sparrow feeing its young

I have a good camera, a Canon  EOS 1200D. The camera is heavy, especially when I attach the telephoto lens to it. BUT this lens can bring the world closer - in times when I can't get to the place I like to photograph. They are my 'legs' in a way.

I tried to film with this camera too, but my arms don't stay steady long enough, so after a year of research (and driving everyone demented with my for- and- against arguments) I purchased an iPhone.  And I must say, it does take brilliant photographs and is very easy to use in terms of filming.

Yesterday I was getting my Canon camera ready to bring to the family reunion in Holland.
I saw a sparrow feeding its young, I grabbed my camera, put the telephoto lens on it to capture that very moment of daddy feeding its offspring.
sparrow about to feed its young sitting on a window box
sparrow feeding its young
But I had great difficulty holding my camera. My right arm stayed weak from a very long time afterward. That almost brought me to tears.
If I bring my camera to Holland, I probably need to bring the (lightweight)  tripod too. And that is all too much to bring, so... I probably just bring the iPhone.

This experience brought me to share with you how I made an attachment to my wheelchair which can hold the phone. I can take pictures, or videos without having to hold it. I don't even have to reach up, as I can take pictures using the remote shutter release by connecting the headphones cable and pressing the + or - volume button.

To make my 'devise' I used a selfie-stick, bought at Dealz  (discount store) for €1.50, and a few strips of Velcro.
That is all!

homemade smart phone attachment for wheelchair
homemade smart phone attachment for wheelchair
homemade smart phone attachment for wheelchair
three strips of Velcro to secure the stick
homemade smart phone attachment for wheelchair
hands off smart phone connection for
iphone on selfie stick with the  headphones connected. the volume button functions as a remote shutter release.
iphone on selfie stick with the
headphones connected.
the volume button functions as a
remote shutter release.

Friday, May 19, 2017

Snapshots books arrived. Happy days

... another book-baby safely delivered into this world

a small stack of snapshots books by Corina Duyn

It is always a special moment when a book I have been working on for months (or years) arrives at my house.

Yesterday, when I was on my 'holidays in my front garden' (which was not much of a holiday as it rained, and was very cold- we even had a hailstones shower), courier Colin arrived with one heavy box from City Print in Cork.

And I could not wait to have that private moment to open the box and see how my book-babies turned out.

I must say- if I can be a proud mother that they turned out just beautiful.
They look good.
They feel good.
The pages are clean and clear.
... with a slight imperfection, but none of us are perfect...

Printer Ronan took pride in getting my books to look as good as they are. He had told me earlier: "...on a general note, well done for compiling such a book - it’s really well done." 
We had some funny communications. As the book is in both English and Dutch he responded to an email in Dutch- having used Google translate.
I love those little moments of fun.

Thank you all at City Print, you really are a dream to work with.

It was an interesting project to work on- the initial idea was much simpler. It took on a life of its own. See links below to read more. It is amazing to have received orders for this very limited edition book from as far as Canada, UK, Holland, Ireland, and even Australia. Thank you all!
(book order will be posted early June, after my family have had the first viewing during the reunion n Holland)

Snapshot books have arrived safely into this world
Back of Snapshot books

Further reading and links

Thursday, May 18, 2017

Going on holidays in my front garden

I am a bit overwhelmed at the moment with all that is ahead of me in the coming three weeks.

Next week I will be in hospital for five days under the care of my neurologist. A care week, in a way, in which I hope to receive some physiotherapy support and a look at why my right hand and arm are tingling and loosing its power. Why my heart is doing funny jumps, etc. etc.

I have had these 'support weeks' in the past. Sometimes they are immensely useful to get a chance to have the many symptoms associated with M.E. looked at.
I have had MRI scans, meetings with OT, muscle testing, physiotherapy, etc. But also a meeting with the liaison officer for unexplained neurological illness  which truthfully broke my heart. The psychiatrist whom I met afterward deemed me of sound mind, but it all took a huge amount of energy. Which is something I don't have to spare...

The last time, two years ago,  I was under the care of my neurologist's colleague, as my own neurologist was on holidays. I was there to have the intense back pain looked at. I could no longer sit for any longer than a few minutes, due to pain at the tailbone area.  And the lump on my back was causing me a lot of grieve.  The doctor in charge tried very hard to convince me that it was all in my head. I was given lectures about endorphins:
  1. any of a group of hormones secreted within the brain and nervous system and having a number of physiological functions. They are peptides which activate the body's opiate receptors, causing an analgesic effect.
and that I was perceiving pain that was not there. That I don't have enough positive hormones.... GRRRRRR.
The pain arises from activities I LIKE to do, like writing, and weaving, and sculpting, and gardening... They give me huge pleasures. AND pain.

This time I am going will be going in armed with the documentation compiled by Joan et all, for the Millions Missing Protest. It is brilliant. Clear. To the point.
I will read it every day over the next few days and bring a few copies of the text with me. And hand it to anyone who will try to tell me that it is all in my head or dismisses the diagnosis of M.E.

So, yes.

I am tired. I am worried. And yet I hope that the week will be a good and positive week.
I am planning to go in with an open mind, and trust that my neurologist did put a plan in place, like he promised to do. So no wasted days, and no frustration.

I hope that I can somehow use this week to build up some energy and have some rest too, as the following weeks will have an intensity of a different kind.

The family reunion is coming up in Holland.
It means a lot of travel. Staying in four different locations in eleven days. For one weekend being in a house with 30 people. It makes me anxious to think of it all.
But I have put the best self-care-plan in place.

Trust that all will be well over the coming weeks, and that I actually enjoy that big family event.

So for today, and the coming days, I will have a holiday in my garden.
I will sleep in my greenhouse and take adventure to my front garden.
Sitting there always makes me feel as if I am on holidays.

The view is so different from my back garden - a walled in garden. The view is so much wider. and Further. It has a different energy!
I will bring a book, and a snack, and just BE.

See you soon

Be well.

Further reading and links

Wednesday, May 17, 2017

Who is pulling the strings?

Yesterday I started working on an abstract for a talk I have been asked to give at the upcoming event: 
 The Broken Puppet:  A Symposium on Puppetry, Disability, and Health.

While writing about puppetry in my life I remembered my first ever puppet, made at the age of 15. And how, while working as a Doll Artist during the 90's, animator Jimmy Murikami approached me to create a series of puppets for an animation film called Ballycardool. Unfortunately this project did not receive the necessary funding and around that time I became seriously ill with M.E.

I remembered making a drawing of a puppet early on in the illness (3 years in) and wondered: Who is the hand that keeps me upright, or leaves my arms hang like useless objects…

drawing of a puppet by Corina Duyn, with text: Who is pulling the strings of M.E.

Who its pulling the strings? (Corina Duyn 2001)
text in drawing :
A puppet, not a great drawing, but...
the puppets is me with M.E., I have little or no
control over my body. WHO is the hand who
keeps me upright, make me walk, make me
move gracefully, or let me stumble at times,
makes me stand my full length or let me buggle at the
knees, makes the arms move or leave them hang like
useless objects. Who is the hand that has control.
What is the hand that holds the cross and moves 

'my' strings at its will. Can I become the hand
over M.E., have control over me?
Hand, whatever you do, don't drop me
altogether, hold on, but stop
playing tricks...

This drawing- not the greatest ever made, but I can still feel the emotion surrounding it. I felt NOT in control of my body any more. I could stand up one minute, the next I'd be like a dropped bag of potatoes. slumped on the floor or couch and not able to move my limbs. As if the strings were cut. Or the hand that holds the cross of the puppet just let go. 

The hand is the hand of M.E.

Maybe in light of the brilliant movement of the Millions Missing campaign, maybe this hand who holds the cross of those with M.E. is that of the HSE and our Government. They can either hold us up, or leave us slumped on the floor...

Further reading and links

Tuesday, May 16, 2017

Brian Brain

While tidying my 'office' I found my ZIP drive - a storage device of days gone by - and a few days ago I plugged it into my computer to see if I can retreive the files which are on it. 
A bit of a challnege, but I was able to find a very roundabout way to bring some stories back to life. This is one of them.

Although this account of Brian Brain was written in 2001, I still experience a lot of the same issues…

Saturday 17 nov. 2001 10.40 am

... A thought that came up when I picked up my journal was something R. had said a long time ago.  “I am sabotaging my recovery if I keep going over my limits.”
Very true but what I would like to know is, where does this thought suddenly sprung from? 

Maybe something to do with today's page of Simple Abundance by Sarah Ban Breathnach?
Fair enough the word sabotage is mentioned. There you go, that is how my brain seems to work, it picks up on a word, opens up the drawer containing sabotage and a thought flows out.

I envisage my brain to be like a filing system, full of drawers, containing thoughts, feelings, emotions, memories, whatever.
My system is made of beautiful small old pine drawers, with tiny wooden knobs. The drawers full of index cards. Off course of artistic design.

A little fellow called Brian, is in charge of this amazing library of memories, although he is not always very efficient. Early memories were badly filed and many lost, maybe deliberately? Or perhaps put on the pile to be sorted later.
Unfortunately this little fellow has been badly effected by M.E. too. The heap of ‘to be sorted later ever increasing.

Occasionally some memory is retrieved from the pile by Brian, and I wonder if he is playing tricks with me or if there is something in this specific picture that I need today. I have my doubts...

The big pile of unsorted memories and the disarray of the overall system has left me in pretty embarrassing situations.
The drawers with peoples faces and appropriate names and valuable information is poor, to say the least.
I see a face and Brian starts to run a round like a lunatic opening several drawers, the face says hello. Which means we have met before... more drawers opened.
As I know the difficulty Brian is going through I acknowledge the smile and tell the face, embarrassed, that I see recognition but that is as far as I get.
I get a name. More specific drawers opened, other kicked shut. So bit by bit, with the help from Brian and the face and my acknowledgment of incompetence we arrive at a final conclusion.

Me relieved and a conversation can begin at a reasonable level. Brian sitting down sweats poring of his tiny eyebrows. All of this probably leaves the system in a bigger state of chaos, but for this time I am saved.

I wonder if actions are also part of his department?
During the time my brain was severely affected by this illness I made many funny mistakes, laundry made it several times almost into the fire or the fridge.
Running a bath could have me put the plug in the sink instead of the bath, most of the water run away down the plughole.
Ringing the bell instead of turning on the light.
Fun, thankfully I can see it as fun.

Numbers were very confusing too, I remember reading out my newly acquired phone number to a friend and it was completely different. No reverence what so ever to the actual number.

Word were also a major struggle for about one year. Lists were a vital item as memory failed me all the time. But the word on a shopping or to do list were of a new language: Letters from the second word would appear in the first: windox bowes (window boxes) , or half appeared in Dutch: cauliflower (bloemkool) would appear on paper as bloemflower.

Obviously I only became aware of it when I viewed my list.
Two letters might become one. This still happens when tired. The letter i would also function as the leg of the letter n.

So if Brian is responsible for all of this he is a pretty mixed up sort of fellow, but doing its best to get through the pile of unsorted data, putting everything where it belongs, not a mean task!

Not always comfortable to have this lousy brain but fun all the same.
Lately I found myself in the bathroom, well actually trying to get out of it. The door opening inwards, I opened it with my left hand, but couldn't get out. It took me a considerable amount of time to realize and the to actually act out my thoughts, that I had to move my feet back to open the door a bit further, so I could get out...

Further reading and links