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Monday, February 23, 2015

Haiku on Beg/ Stare/ Tell/ Pry


Open and raw wound
Begs for any healing salve
Painful memories

Outside casino
No energy left to beg
He has had his chips

If I had to beg
Grovelling on poor old knees
T'would be for world peace


You stare at my face
Dear prosopagnosia
No recognition

Woman over there
Stares at my face knowingly
Wonder what she knows

Stare into mirror
If you can judge your true self
You may judge others


Tim’s telling tall tales
To teach alliteration
Terrifying tots

Tell or not to tell
Schoolyard bully does not care
I have the power

Wood smoke in the air
Tells me there is a bushfire
Burning to know where

Carry her to term
Whispering, playing music
Born she'll be attached


You don't have to pry
My life is an open book
Gift on wedding day

Pry if you want to
Life in photos and comments
It's all on Facebook

I am paid to pry
A trained curiosity
Reconnecting self

Saturday, February 21, 2015

Haiku on Story/ Content/ Discover/ Jump


Exquisite story
Words chosen so carefully
To evoke the mood

There is the story
And then there is the subtext
I read in your eyes

I read and re-read
The story of your body
Each scar a triumph


Content with Haiku
He created contention
No further content

Stood on the top rung
Content with his achievements
Then slid down the slide

Life is a process
Content different for each
The unique journey


Discover the depths
Look into her deep brown eyes
And lose your old self

Discover your soul
The risk in meditation
Meeting the real you

Know about the risk
Now discover protections
Against child abuse


Plain brown kangaroo
Jumped fence into the paddock
For the sweetest grass

Plain clothes policemen
Entered our home and said 'jump'
The firecrackers helped

He told me to jump
Being much bigger than I
I asked him how high?

Trampoline of life
Jump till we overbalance
Laughing as we learn

Sunday, February 15, 2015

Transverse Myelitis and Exhaustion

I recently got a new iPhone, and it comes with one of those health applications (apps).  Wow, I can record my sleep (averaging 9 hours + a night), every time I crawl upstairs (not often), my weight (decreasing), my blood pressure (116/78 - absolutely normal for someone my age), my pulse rate (varying between 67 and 83 depending on my activity levels) and walking. I was advised by a colleague to consider an app called ‘Pacer’ – a little more user friendly and links automatically with the iPhone app.
OK, here is the fun. I have always been competitive. So, Pacer measures every step I take, and now I carry my phone with me obsessively. I would not want to miss a step! It provides this nice little diagram showing my steps. The ultimate is a classic 10,000 a day – yeah, right. Well I manage somewhere between 400 and 2200, and this nasty little app calls me ‘Sedentary’. What a bloody cheek; don’t you know I am partially paralysed, and had to fight my way back from being totally paralysed from the chest down. And of course it doesn’t. So every day I get called ‘sedentary’... Grrr...
I decided to do something about it. First, I have to say I work part time, two days a week, in my profession as a psychiatrist (very sedentary). I drive there in the morning, but need my life partner to be there to drive me home each day. During work, I am mobile between patients going to the waiting room, the toilet or the kitchen and, by the end of the day, have usually clocked up about 1500 steps. So on the days I am home I have tried to emulate that. Well, to tell the truth, I have tried to surpass myself. I have begun to use a stick to walk, just to manage my balance. So, we began with a gentle walk to the end of the road and back again (800 paces or so); then we went the other direction and back (about 1000 paces), and on the best day I managed 1400 paces in the walk and another 800 paces fiddling about at home – total 2200 paces. Woo hoo...!! The bloody app still records me as ‘sedentary’. No sympathy. Grrr...
Now here’s the thing. At the end of a standard work day (about 4pm), I am exhausted. I need to stop, sit, veg out or snooze. I am really tired. We go to bed at 9pm, and often sleep 12 hours on those nights. After 2 days we have a whole day of vegging out. I am so physically tired, so fatigued, I really can’t do much more than sit about, read the papers, watch some sport on Television or, occasionally, do some writing.
Every thing I read says that increasing exercise will begin to combat the tiredness, begin to rebuild muscles, stop my slow annual deterioration, and keep me healthy. Mmmm... I revelled in my achievement of walking 2200 paces in a day. But I cannot exercise if I am exhausted. It is not that I have really pushed myself to exercise past what I can do. I do know about doing that, having done Karate for 22 years, and having run a full marathon in 1987. I am not really pushing myself. There are just days when I am exhausted.
So, yesterday was two days past the work days. I promised myself we would go for a short walk at the end of the day once the temperature begins to drop a bit. Well, I just could not do it. I was too tired. That made me feel a bit depressed. But I just had to accept my limitation.
Could there be something else wrong? Well, I eat well (married to a dietitian who works hard to ensure I get the nutrients I need). I am taking daily supplements to ensure that my vitamin levels surpass what I might use up – within reason). I am not injured as such. My leg and core muscles are much weaker than they used to be, but they do respond when needed. Could I be depressed? Of course I get depressed about things I cannot manage, but I am not chronically miserable, I don’t beat myself up or hate myself. I am optimistic within my limitations. As noted, my sleep and appetite are fine. No I am not depressed. Just bloody irritable at being referred to by some idiotic app as ‘sedentary’. Ah well.

I will try a walk this afternoon when the outside temperature drops below 30 degrees. Not too far. With Jan, and with my trusty stick. Then I can flake out in front of the TV and watch the golf without feeling guilty.

I have written about exhaustion in some chapters of my book (Taking Charge: a journey of recovery). You can also find out more about fatigue on one of the Multiple Sclerosis sites – information that mirrors what happens in Transverse Myelitis.
Does anyone know what causes the fatigue? No, not really. Several authorities have described it beautifully. But no-one knows enough to really find a cure, or at least find some solutions that might be better than the usual platitudes.

Sorry guys.
Just do what you can each day...
Oh, and don’t feel guilty.

Friday, February 13, 2015

Haiku on Limit/ Heat/ Grip/ Thought


Do not limit me
My mind needs to fly freely
Into the unknown

No limit to gene changes
Mankind will evolve

Limit your desire
Curb your enthusiasm
Hide under a stone


Worried about war
Overheated rhetoric
Alfred burned the cakes

And more bullets fly
How long can you stand the heat?
One more bites the dust

Sun announces day
The heat of light warms our bones
To activity


Ageing grip on life
A measure of frailty
Don't want to lose it

Small talons grip hard
Sheltering under the eaves
Waiting out the storm

He bought E tablets
Lost grip on reality
Gained bad tummy gripe

A small thought struck me
Was going to hit it back
Thought better of it

I had a small thought
It linked up with another
And then there were three

Phew said little mouse
Thought I saw a pussycat
Creeping up on me

Friday, February 6, 2015

Haiku on Model/ Shape/ Cup/ Storm


Model of a bridge
Across artificial pond
With plastic lotus

The model railway
Gathers attic dust waiting
For the next green light

She's built superbly
A top of the range model
Pussy cat who roars


I have looked at you
Most every day of my life
Such exquisite shape

Used to be in shape
My spinal cord injury
Changed life's direction

The womb shaped my life
Spent the next seventy years
Seeking re-entry


He cupped her small chin
Stared deeply into her eyes
And bent to kiss her

Coffee cup empty
Brain emerges from the fog
Time to go to work

My cup runneth over
Happiness poured from teapot
Never did work well


I sit in quiet
My mind storm slowly settles
Finding peace within

Conquer universe
Storm troopers on other worlds
Limited vision

The eye of the storm
We sit in subdued silence
Battened down for more