Monday, March 21, 2011

Patient Patient?





















While sitting for almost that two and a half hours on a plastic chair in the waiting-"hall", to see the neurologist, I wondered if the word patient really is spelled in the same way for the person who is ill and the person who is waiting, and waiting, and waiting some more.
It is!
Here a few descriptions of pa·tient (from dictionary.com)
nouna person who is under medical care or treatment
–adjectivebearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like.
– Idiom having or showing the capacity for endurance

Endurance...
I didn't want to go to this appointment.
I always end up exhausted, depressed, disappointed, and in more pain than I was before going.

I nearly had my wish granted- I hadn't been able to organise a life to the hospital- 1 hour away from here. But as Jane had to go to Cork anyway, I could hardly refuse the lift.
So I went. Thinking that whom ever or whatever is in charge of setting up these kind of options (the universe- God, whatever your choice) must have some reason to make it important for me to go and not to cancel the appointment.

As usual, I went with a certain expectation in tow. Again. Maybe, just maybe, "they" can tell me more about the ME in my life. Or more importantly, how to ban it out of my life. 
Silly, as it is me- or all of us living with this challenging illness- that know more about living with it than any medical professional you happen to see 5 minutes every 6 months will ever know...

I was seen after waiting for 2 hours and 45 minutes. Not by the neurologist but by a registrar, or whatever the title. No offence to her, but her stop word was "I know". This confused me, as how would she know how my past year has been before I told her... How did she know I had many renewed challenges regarding pain and exhaustion, together with the mental challenges that followed...
How?
She didn't know.

When she checked my racing heartbeat, she suggested that I have an ECG done.
But,
As it was now after 5pm there was nobody available at the ECG department. (I thought I was in a hospital..??)
I said- maybe not so nicely- or patiently- taking today's theme into account... "I have been here since half past two..." Neither the registrar, or the nurse present, responded.

Blood tests were also suggested, but that department also closes as 5 pm.

The requests for these tests will be forwarded to my General Practitioner.
Knowing from experience that a letter from the hospital can take months, I asked when this would be done.
"Oh probably within the month." She said with a smile. 
This left me speechless.

Finally home, I am mad, tired, in pain, sad, in tears and pledge again not to do this to myself ever againNo more pointlessmeaningless, unproductive, futile, ineffectual) appointments (–noun a fixed mutual agreement for a meeting)
I am better off staying at home and deal with the illness the way I know best.
I feel I wasted very precious energy today. 

Oh before I forget.. I asked her what her views were on the XMRV virus and the links to ME.
In all honesty, she said that she doesn't follow the news.... and kind of laughed.

I rest my case.
Tomorrow I will go back to what I know best, writing, meditation, go out into the garden, and love all I love in life. 
That at least makes me feel good.


PS in fairness, the doctor was courteous and kind, it is the system that I am most annoyed about.

Thanks for listening! I feel better now!

PS.. always happy to hear/read your thoughts/comments on any of my blogs.

Friday, March 18, 2011

Gratitude

During my successful trip to Holland, there was many a time I had blog posts in my head. As you see, these thoughts never made it out of my head and onto the blog... When I came home, I had great plans to rectify this... once home, a different life started again. Having been away is almost as distant a memory as I felt when I landed in Holland a few weeks ago.
Maybe it is just a 'thing' of being in the present? Which I have been told is a good thing!

Once home, my garden wanted attention, and during the few days of sunshine I surely made the most of being outside. The hard part is that it is sooooo hard to stop clearing after half hour of doing so. Reality of M.E. is ever present... not the kind of present I like...
But...
Isn't there always a But?

I have to acknowledge that M.E. has given me lots! In the past few days I have been rewarded for the creativity it has brought me.

My latest book Flying on Little Wings has received lovely heart warming comments. The handmade version made people 'cry' and provoked thoughts like these:

 ‘Gentle and wise, the simple reassurance of nature breathing from every page.  (Spark Deeley Artist and writer)

‘Stunning photographs and thought provoking words. It can be read many times to entertain, sustain, and help keep belief in things improving..’ (Sue Page)

'Precious'  (Dolores Ronayne)
Then on Wednesday I received a lovely letter from Iris Poet Brendan Kennelly congratulation me on the printed version of this book: ‘A stunning artistic achievement. It will bring joy and admiration into many hearts and minds.’



The book was created during a challenging spell with the illness, and I can only be grateful for what it has brought me. If you like your own copy, click on the "Buy now" button. The printed books costs only €4.99, the handmade one €25 

Book options (inlc postage)




On Wednesday I also received a letter from the Irish Wheelchair Associated (IWA) that my sculpture 'Naked Thruth' was the overall winner in the 'carft' section (anything in 3D) in their National Art and Craft Competition.
"While conducting a dialogue with the illness M.E., through words and art, I also examined my relationship with the wheelchair. 'Naked Thruth' is one of the most poignant sculptures I have ever created. Working on this image, I really had to look at my body and pared it down to the basics. Body- wheels- and still being left with the feeling of restricted movement.






 The sculpture is made out of airdrying clay- wire- plastic Barbie-doll bicycle wheels - gravel and varnish."


The piece will be part of the IWA Exhibition which will probably be in May of this year. I will keep you posted.

Gratitude abound!

Wednesday, March 2, 2011

A different reality

Having left Holland almost 22 years ago, and knowing that Ireland is my home, I am always surprised, and a little confused, how quickly Holland takes the feeling of being my home. 
Haarlem- the town where I lived for the last eight years before departure to Ireland- is familiar. So familiar that I am taken aback when the thought strikes me that I have never left. My life in Ireland seems alien. This all happens within the first few hours of "kissing" Dutch soil.

Standing outside a cafe waiting for a taxi to bring me 'home', I watched a continued stream of bicycles passing by. I think- I used to do that- I used to get around on my bike. What has changed?
Although I stand there with my walking stick for support- and unable to walk the short distance to the bus station, I temporarily forget I that I got ill with M.E. It feels like some unknown force has plucked me out of my real life (in Ireland- with M.E.) into this different reality of being well in Holland.
Of course M.E. did come along on this journey. It always does. "It" doesn't like to stay behind...

After a busy day of travel yesterday and having picked up my new book and having had lunch with friends, I arrived in Holland. I was greeted by my brother and sister and law who brought me to my friend's home. Lots of talk- lots of catching up- staying up too late- no great sleep because of being much too tired... and hey presto I wake up wrecked and saw my plans for today fade away.
But. There is always a but. I had brought my meditation downloads by the wonderful Kerie Logan. A life savior ones again. M.E. does not disappear with the sun that shines for me in the meditations, but it certainly gives me hope, the changed focus gives me air to breath, the gentle words give me a sense of lightness. I can get on with my day.

I did follow my plan! After a very leisurely morning, I was dropped off at the Provincial research centre where I wanted to find out about my great-grand-mother's life. A place full of lives lived- a place full of hidden truths.
I found the hand written birth certificates of my great-grand-parents (on microfilm) and was able to print out copies. What made me laugh most of all was that the address of the father is noted. The address of the mother has a separate entry. "Same address" was the verdict on my great grandparents forms.
But- was Holland ahead of it's time of unmarried mothers, or parents having a Living Apart Together relationship?

Living life in a different reality turned out to be good.
Now SLEEP!
X

Ps To add to my confusion of where is home, on hearing the Dutch language being spoken, I think He, there are more Dutch people around..."
And my spoken Dutch has a lot to be desired...