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...
Done.
Finished!

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.

HSE

Health Service Executive

Really?

Anyway.
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

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.

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'.

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?
None.
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.
OR
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.

Infuriating.
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:

noun

a person receiving or registered to receive medical treatment.

1. synonyms:

   sick person, case, sufferer, victim

adjective

1. able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious.

   
   

   synonyms:

   forbearing, uncomplaining, tolerant, long-suffering, resigned, stoical;

Do I need to say more?

Hospital stories:

• Day 1: The peculiar world of hospitals
• Day 2: To Paris by hospital bed
• Day 3: Speaking different languages
• Day 4: The honeymoon in over
• Day 5: Unfinished business
• After thoughts: Taking back the power

* Thanks Joan B for the title!

Retreat

... 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.

Walking sticks or rolator

Yesterday I had a follow up meeting with the Community Physiotherapist after the hospital stay a month or so ago.
I was greeted with utmost respect and understanding. The assessment was detailed and lasted for over an hour. She gave me much credit for knowing my body well, and for being aware of the value of pacing etc. It really warms the heart to be listened to, and to have someone work with, to see if there is anyway I can improve my mobility and ability to some degree.

As we conducted the first part of a balance test, I kind of joked how I used to be a gymnast in my day. A reasonably good one. I even did some teaching for a few years. Good memories. Very good memories.
The physiotherapist said that the experience of being a gymnast probably helps me now with how to evaluate the workings (or non-workings) of my physical body. I know how to adjust my posture, although this does not come natural anymore.

Another discussion, after spotting a rolator in the gym, was about the use of mobility aids.
I have a parking lot full ...
From walking sticks, to a rolator, manual wheelchair and two mobility scooters (a small portable one, and a big sturdy one).

After my steps into the sea in Texel,
with my brother Kees

As I want to build up my walking outside the house again, which I had resumed last autumn but collapsed back in February  I was wondering should I use the rolator in stead of my two sticks?

During a test, it proved that I walk with the same """speed""' (ha ha) with both, but that maybe the rolator, which has a little seat on it, will ease the stress of walking outside the door.
I can walk the same distance, but can sit down and enjoy the view, without the worry that I need to get home quick before my legs give up.

I like that.
It makes sense.

The reason I suppose I am more likely to use sticks v. rolator is a mental one.
With sticks I feel less disabled than using a rolator.
The same counts for a manual wheelchair verses a powered one.
My 'pimped' wheelchair versus a boring black one.
I feel less disabled ON my scooter, than IN my wheelchair.
Or being in wheelchair accessible taxi (seated in my wheelchair) than in the a transit with the HUGE letters Irish Wheelchair Association on it.

It is all just a tricks of the mind.

page from Into the Light. 
IN a wheelchair, or ON a scooter

my pimped wheelchair

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

Corina

Taking back the power

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...

17.45:

'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.

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. 

'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.

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?  😀