Tuesday, May 30, 2017

The quickest trip to Hollland ever

6 am. Tuesday morning. Cork Airport Hotel.

I think you, my dear reader, know that I was not quite looking forward to the trip to Holland. Don't get me wrong. I like to see my family, but it is all a bit much. Energy is limited. Very limited. Lots  of planning was required to make this trip happen. To keep my health in check. To not get too exhausted. To not get sick. I had to think ahead.

I believe I made a good plan.
But can not plan for things out of my control.

As my flight was at 5.50 am, I booked the Cork Airport Hotel for one night. It saved me, and a willing driver, to have to get up in the middle of the night. They are incredibly helpful here, and have an accessible room. I am here since yesterday afternoon, when friend Mary was able to bring me.
After early dinner, I took (half) sleeping tablet and slept from 8pm till 3.15 am
Pretty much my usual time to wake up, have a light snack, take pain medication, turn on meditation music and go back to sleep.
This morning I did the same routine, except for the part of going back to sleep.

I got up, dressed. And had the porter collect me and bring me to the shuttle bus- and to the airport. 5 minutes down the road. Perfect!
Checked in. Got rid of my suitcase full of Snapshots books. My chair, and me were deemed safe and drug free 😀. And I was on my merry way to Holland. Finally ok with this big adventure ahead.

Then I happen to look up at the departure screen, and saw the the Amsterdam flight was CANCELLED. Not even delayed..l just NO flight.

My airport support man came to look for me, and we went back down, to pick up my luggage again.

Kind of funny.
Yesterday I said that I could not wait to get home again... here I was, not even half hour after checking in, I found myself at the arrivals gate ... 

Using a wheelchair and getting support, sometimes has its perks. 'My airport man' brought me to the top of the queue and I secured a flight for this afternoon. Aer Lingus man rang my hotel, and I have the room back for the day, and the shuttle bus picked me up again.

I am writing this, sitting by the window, watching a Huge bunny rabbit running around the field outside my window, and can see and hear the occasional plane.

I have at this moment no idea if I will make the ferry tonight to the Texel hotel. And I will  definitely miss my passport renewal appointment at the Dutch airport this morning.  That probably means I have to travel to Dublin for that instead... more cost. More travel... The best made plans...
Next I have to contact few people and the hotel in Holland.

Nothing I can do to change this inconvenience and about the extra costs I will have. Go with it. Have a cup of tea and go back to bed.

Talk to you tomorrow,  hopefully from Holland!

Monday, May 29, 2017

Our Puppet film on the RTE People's Angelus

A bit of exciting news. 

Nothing to do with hospitals!

Remember the Puppet project I facilitated? 
Well, a few months ago, before the screening of the Life Outside the Box  Film in Canada and Dungarvan Cinema our IWA group were reflecting on where to show the short film next.
One of the suggestions from Margaret Ann Foley was to ask RTE (our national broadcaster) if they would like to show it on the People's Angelus ...

The one minute daily reflective Angelus broadcast on RTÉ One is one of Ireland's longest-running programmes, having been aired daily at 6.00pm since the inception of RTÉ television in 1962.
Ireland has changed enormously over that time and the nature of the broadcasts has changed with it. They are now changing again. Since October 2015 New commissioned films create a reflective space for all in the peak-time schedule… In addition to these commissioned professional films, RTÉ One has designated one slot per week, on Fridays at 6pm, as The People’s Angelus slot
More about the People's Angelus

And you know what.
I contacted RTE's Roger Childs, Senior Production Executive, Genre Head of Religious Programmes RTE. I emailed a little bit of information, and the film. I received a Very Enthusiastic response that same day.

A few months have passed, with several edits to the film made, to fit it in a one minute slot, and add the Angelus (Bells) , but still try to tell our story of stepping out of the Disability Box.
Contracts and permission signed. And now...

one minute version 

So please tune in.

It will be included in a regular rota of People's Angelus submissions
every Friday, over the coming months. 

This Friday is probably the only Friday I am not in Ireland,
But please watch for me!

From this early start of the puppet project...
...to dancing outside the Disability Box! and onto national television

Thank you all who were involved in this project.
Members and Staff at the IWA.
Alan O'Callaghan of The Bootleg studios.
Roger Childs at RTE.
And all who supported us along the way.

* I have also been asked to talk about the project at the upcoming The Broken Puppet:  A Symposium on Puppetry, Disability, and Health. At UCC in August

What a journey!

(Most of this blog post was first published on the Puppet Blog, posted on Sunday 28th May)

Sunday, May 28, 2017

Taking back the power

This morning I decided to stay in bed for a while and watch a movie. Sunday morning luxury.
In the movie there was a scene in an airport, where travellers were transported on the airport-caddy.
I thought "That is me." I am that kind of person. "old", or "disabled".
It shook me.
I got upset.
I don't get upset that easily... What is going on?

Later on, I spoke to my wise friend Dolores. 
She asked about my week in hospital. I told her of the beautiful moments, and the more challenging. (see post of the past 5 days - if you like to read them.)

This is the jest of what we talked about:
When you are called into hospital, it is a kind of contract. The stay has a purpose. It did not work. This lack of fulfilling the 'contract' can be compared to a betraying of trust.

Through the experience of the positive but challenging detailed probing into my symptoms by the physiotherapist, the waiting for MRI, the not talking with the neurologist before heading home (as tests were not completed), they robbed me of my power.
It left me vulnerable.

I think I am pretty good at managing my illness. How to deal with it on a day to day basis. How to work around the symptoms. How to work with the symptoms. How to make my day- my life- good. Maybe it is a brilliant case of sticking my head in the sand (or in my garden and my art and writing). I am well. I live well.
But being in hospital and being subjected to an ill-system makes me upset.

I go in happy and with an open mind. And come out upset, with a frazzled mind.

So, today, I am going to take back the power, as I have a busy few weeks ahead of me. 
My journey to Holland starts tomorrow with a trip to the airport hotel. And then a Very Early start on Tuesday.

I will try to stay in touch here on my blog. ... if there is anyone who can tell me how to add images to the blog if writing on the iPad, please, please let me know!

Taking back the power started with a walk around me garden. And I like to ask you to join me.

Much love

Taking back the power

Saturday, May 27, 2017

Unfinished business

Landing slots.

17.29, Friday afternoon. Room 2. Flat on Bed 2. Bags packed. 
I should be on my merry way homewards bound, but am still here. Holding tough. 'Circling the air in the hope that in the next hour I will be given a landing slot at the MRI department...' an analogy given to me by the neurologist who himself was flying. It seems. 
He suggested to come back to outpatient when all tests are done so we can review what is going on... Making the 5 day stay deflate like a lead balloon. Going home without a proper analysis, and tests unfinished.

A doctor in his team has tried to blackmail the 'bed-booking-department' : "Give my patient an MRI and she will free up a bed."
And beds are like gold dust here. Truly.

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 ...
Can you follow me?
If I was not planning to go to Holland next week they would offer me to stay fir another few days. Knowing that nothing happens over the weekend...

'Line is out', I am going home. No landline slot for my MRI.

The MRI department will close from 8pm till Monday morning. 
Now, maybe I am illogical, or naive, but would it not be cheaper for the HSE to staff the imaging departments, get people looked after, get them home, free up beds... would that not make financial sense? Surely it is more expensive to keep a patient in a bed than to pay wages etc?
Maybe not?
What do I know?
I am just a patient...

Anyway, I did get nerve conduction studies test done (nerves in my arms end leg, nothing to the emotion...). Interesting, as it was conducted by student doctor, so I was able to listen to the tuition, and not get too bothered by the painful jolts of electrical impulses. All I can say is 'don't try this at home...'
A verbal report was that all is within range, but I did not get final report, as I  did not get to speak to neurologist before departure.

I am going home with a heavy heart, as I was left hanging in limbo. Too many Unanswered questions. I would have liked to hear the neurologist view in the physiotherapist findings, and if there us anything 'new' going on in my brain... I realised how important it was to me to have some bit of clarity before meeting my family next week. Some whom I have not seen for ten years. I had not anticipated this emotional response to this unfinished business...

So, overall an interesting week of beautiful moments of sharing, times of rest, but also of dealing with reality of living with illness, both personally and being dependent on an ailing health system.
Home soon.
To my own bed.
And a few days of garden-heaven before the next part of this 18 day marathon.

Thanks for your company and support during the past week. And always.
Much gratitude.

Also a big thank you to the nurses who work so hard and are hugely understaffed. Hugely. A big thank you to all whom I had the pleasure of meeting. Patients and staff.

Friday, May 26, 2017

The honeymoon is over

A more challenging day. The 'Honeymoon' is over.

I started my day with a massive headache and nausea. No idea from what. But I focused my mind on getting the MRI done. 
It almost worked. 

I was in the bathroom, maybe about 9am, when the nurse knocked on the door. "Do you have a line in?" (i.e. a needle in my arm). No I don't. 
"Are you sure? The MRI people want to know..."

So, there went my slot to get the scans done. A doctor needed to come to put the 'line' in, which took a while. And there was no further call from the MRI department. The nurses tried a few times to see if I am even on the list for today, or tomorrow, but were given no clear answers. 
Oh well...
Thank you nurses, for trying.

The physiotherapist came back with her list of exercises to strengthen my legs, back, and arms. Very gentle stuff. Advise on how many I can do, and don't do them all in the one go. Manageable goals.

While standing up to do one of the exercises, I was holding on to the bedside locker, I felt as I was 'swaying gently from side to side'. (Nothing new).
The therapist was quite concerned about this and followed her questioning and assessment in great detail. Asked about the experience, did I have ringing in my ears, any issues with hearing, troubled by sounds, my eye side, my balance... swallowing, chewing... She was going to bring this assessment to the attention of the neurologist.
Thank you.

I was almost, or actually I was, in tears at some point. 

Living with illness for so long, a lot of the symptoms are part of me. They are my normal, and I don't spend too much time dissecting them. I don't dwell on them. I can't even list them all.
But unknowingly, or knowingly, I make adjustments to be able to function in my world. To make my world a pretty good one to live in.

When asked to think about these minute details, is actually quite unsettling. I touches me even deeply when I write this. 

I know my way of walking, the 'speed' of walking, the very short distance, the not being able to understand directions, not being able to find words, etc. etc. etc. is not the norm for a 55 year old. I know. But there is still so much living I can do within these whacky symptoms. 

Hospital stays is one of these times when I am faced, head on, with the realities of illness. 
The first few days were gentle. Today was not.

I do hope the MRI will be clear, as in, not come up with some other unexpected problems.
But... whatever new they may find, I tell myself that it is already there, I just don't know the name of it. I am already living with it, so nothing really changes.

I do hope I will be called tomorrow. I will dedicate my meditation again on the MRI people, and thank them in advance. I can not stay here beyond the weekend, as was offered. I need to go on my merry way to Holland...

To end with some positive notes: 
I am now the 'proud' owner of a wrist brace. (😏)

I have the beautiful memory of meeting my room mate "JK", who has gone home today. We listened to the music of The Gloaming last night. I placed my iPad in the middle of the room, we listened from our beds on either side of the ward, both of us transported to places unknown.

I shared today's afternoon 'tea' of sausages, beans and potatoes with my visitor. A second plate was handed to us behind a closed bedside curtain!

... Roll on the last day of this most remarkable week. 

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.