Fatigue....Introducing Mr P, Mr B and Mr S

Fatigue is my enemy.  Unreliable, he pitches up whenever he likes. Follows me like a black cloud on a stormy day.  

No body spoke about Mr Fatigue when I was in hospital. I cannot turn my back on Mr F through a good nights sleep,he is persistent, he weaves his tentacles tightly... 

Like a shadow he has many forms..

Mr Physical (P) Fatigue  drains my limbs of battery fluid.  Today a short walk to the post office is like completing two marathons, as I walk with my head lowered I mutter to my leg...lift... lift.... lift.......

I am on full alert for trip hazards, I lean forward in a battle against light wind. My boxing gloves on I fight a strong gust trying to push me off my feet.

My envy gnaws as Mr P. Fatigue stops me entering charity walks and runs to raise money, I fight his grip.  I want to climb mountains too...

At home I replace the mantra lift  with... drag... drag... drag. I leave trails on the carpet, my socks clean the floor...holes need mending. The sofa opens its arms and I succumb to its warm embrace.

Mr Brain (B) Fatigue...rudely arrives without notice, I try to predict the appearance of Mr B Fatigue: Too much time at the computer... a day out ...too long talking to friends...an emotional day...

I muddle words in too many sentences; the top I wear is a sweatshop..under my breath I search in vain for its real name, until Mr H says... fleece. 

The empty water butt gleefully awaits these days, I snap at Mr H without cause; as a man he is always to blame.

Today Mr B Fatigue is in control; its attack is unforgiving...

Mr Seizure (S) Fatigue... is a danger...he might cause a seizure... but like the weather I can only rely on his unpredictability...no pattern has emerged from my seizure diary scribbles. I planned an excel sheet analysis... but don't have the energy...

The main Survival Tool for Mr F is pacing. But in my life, energy is like a packet of biscuits which must be consumed..

Pacing (described by Trinity College Dublin Disability Service) is balancing activity with rest to prevent energy-debt.; making the most of the energy that you have..

For me the loss of energy is like the losing a loved one; you only truly appreciate them when they are gone.

Following Brian........

Twenty years I have followed him... some say stalk...if having his photo as my mobile phones' screensaver ...not changing my jumper after he hugged me...seeing him two nights running twenty miles away from home....is stalking ....then they may be right!

Last nights performance was intimate, I could feel his spit on my face, gaze adoringly into his eyes...stare at his tight black T shirt as it clung to his well toned chest...

His voice surpasses any other, lyrics make me laugh and cry, my gaze is adoring as he flicks his dark hair away from his eyes... I know all the words, have all his albums, have seen him  more times than I can recall..

Mr H encourages... is the man behind the camera when I queue for another photograph and autograph.

Last night ...his music made me sing from within...we met up with friends, M introduced me to Brian Kennedy when he sang in a tiny pub.....like food, live music has been prominent in my life...

I left with a promise to me...more live concerts will feature in my routine....this morning my left leg refuses to climb up a step, my head is heavy to carry... but none of this matters as listening to Brian sends birds flying free in my heart...  

In Brians own words...

You keep saying that one day things could
Be fabulous,
If only you had the right shoes, new
Clothes, the dream team doing your hair.
Why do you have to waste time on your
Waistline when you could be having
Dinner with me?
Will you really be the winner
If you're thinner?
How can I make you see?

Get on with your short life,
Get on with this sweet precious time,
You know you're only dreaming
So why don't you wake up and get on
With your short life

You keep praying that some day things
Will be different
If you only had the right lips, killer hips,
A sun kissed permanent tan
But does it really matter if you're fatter
Than everybody else on the screen
It's more important to be truthful than just
Youthful on the cover of some magazine

Get on with your short life,
Get on with this sweet precious time,
You know you're only dreaming
So why don't you wake up and get on with
Your short life

...Thank you Brian

Dawn and Brian April 13th 

Flying away from it all

The holiday season will be upon us and people moaning about the weather will be history! As soon as I tick a destination off my list another ten appear....Travel is embedded in my genes....

Even with all my travel experience, I could never have prepared for the onslaught of flying disabled style... I assumed it would be easy..but you know what assume did..it made an Ass out of U and Me...

Getting to the airport is the easy bit...I am in control...Like a dried up meal I pre order Disabled Assistance. At check in I hand over my suitcase... my sense of control and sanity swiftly follow ...

The first hurdle is to get through the stares at the assistance desk, the mouth says Can I help you but the eyes say You need assistance??? ..my fatigue and medical history are not printed on my face...maybe I should forget the make up so I look pale, get a tattoo or wear a T.Shirt with Mines a Brain Tumour... What's your Excuse!

Settled in a wheelchair the second hurdle...the Xray machine... is in sight...I pre warn them about the plate in my head....and even have a letter from my Consultant.....but we play the same game every time...
Them: Can you walk through without your stick? 
Me: Yes but the scanner will go off I promise you...Beeepppp
Them Can you walk through again...Beeeeeppppppp
Them; Hold out your arms I will run the scanner over you..beep, beep, beep
Them: Can you take your shoes off
Me  If you find me a chair,  I need to sit...
Them: Oh don't worry we will swab them... (for what MRSA!!)
Them; Hold onto the glass screen here and lift your feet so we can see the soles of your shoes.
Me:  I can't lift my left foot
Them: Just try...!!!!
Me...Like a novice ballerina trying to do backward plies I fail to lift my foot ...Mr H watches patiently from the sidelines, we share a grimace
Them; OK thank you.....Our session of public humiliation is complete

Back in the wheelchair the third hurdle is waiting by the sign saying Assistance...anxious that a slow dash to the loo will mean I will miss my turn...manic panic surrounds us....our flight is called but we wait....and wait.... At the gate we discover that able passengers are being loaded first..mmmmm

When we land The Wheelchairs ...have to wait till last...I have never been called a Wheelchair before..........'The Wheelchairs' are offloaded like cattle...kept waiting mid air in a metal shed ...an occasional smiling groundsman snaps the tension which builds.

On Terra Firma as one of 'The wheelchairs' I am separated from Mr H...not enough room on the minibus...

I no longer worry, passport in hand, I know at some stage I will pop out like a missing horse by the carousels....and the holiday for me...will begin

Fighting ...how many rounds...before the bell rings

The words of a friends' friend yesterday made me think... The sooner you stop thinking about what was and concentrate on what is you will find peace...wise words from someone I hardly know

Fighting is part of recovery, a fighting spirit part of success... 

Round One was to get back on my feet and walk
Round Two to get back to work
Round Three to get back behind the wheel of a car
Round Four to find something to replace work
Round Five to get my epilepsy under control
Round Six to get back behind the wheel of a car; again 
Round Seven .......

Am I fighting a battle or war...if so is it against the tumour and its effects.... or am I making a vigorous effort in the face of difficulty...

In the ring not all rounds have been won:

Round One I drew, strong legs knocked to the ground have been replaced with weaker wobbly ones 
Round Two I was knocked out but staggered back up onto my feet when I won Round Three.
Round Four is a constant battle. 
Round Five I won, wobbled, saw sparks and fell in the corner
Round Six The ref counted to Ten ...beyond my control

My adult life has revolved around personally driven challenges...Nursing qualification, Climbing mountains...Honours Degree... Masters Degree..move up the professional ladder...pass piano exams...

In the words of Paul McCartney..spookily playing on the radio at this very moment..

When I find myself in times of trouble, 

Mother Mary comes to me,

Speaking words of wisdom, let it be,

And in my hour of Darkness 

She is standing right in front of me

Speaking words of wisdom, let it be

Let it be, let it be, 

Let it be, let it be

Whisper words of wisdom, let it be....

May be for me it is time to accept and relax into my new life keeping hope and motivation alive but not seeing living as a battle to be won...

Easy on the buses.......?

To catch my bus requires split second timing, if I leave too soon I lean against the bus stop like a drunk after a night on the booze... leave too late with no chance of breaking into a run and I wave my fist as the bus passes....

When the bus stops I rejoice at the hiss when the step is lowered, ...snarl when the driver doesn't think  ...grimace when faced with two steps on old buses...hoping one heave ho of my leg will do.

All aboard, I spy an empty seat labelled Please leave for the elderly or less abled..and plonk myself down. Relief reigns where embarrassment once hovered. In the early days of my adventures on public transport any poor soul who sat by me and spoke was bombarded with my brain tumour story... flutters of relief crossed their faces when I reached for the bell to get off....

My first outing after surgery was with a carer in tow... a lesson on how to get on and off a bus safely was needed. A little bit of shopping completed we sat at the bus stop and let two buses pass ...after an hour the same bus driver returned. Falteringly we got on.... He had seen us sitting there the first time...me in my helmet (that's another blog..), my carer in uniform... we tittered all the way home. My care plan read...can't read bus timetables needs another outing!! I loved those trips.  

Nowadays I am a seasoned bus traveller and know the timetables off by heart....I choose my seat in order of preference:
A) a front forward facing seat on either side by the window; even if I have to squeeze myself into half a seat I will.....to suprised stares
B) an aisle seat with my right leg in the aisle; even if I have to ask for a bag to be moved, sometimes my hard stares are required
C) Please No...front aisle seat with my left leg in the aisle:

Option C ..is like being on the waltzers at the fair-ground... with no carriage sides; I prepare myself for the white knuckled ride. Buttock muscles on full alert, hands gripping under the seat (no rail in front today). Every corner turned or island rounded.. my left leg grip on the floor is tested....my buttocks squeal, fist clenches. Muttering under my breath. you can do, you can do it, you can do it....the alternative...a helter skelter slide down the bus on my bum...

Near my destination I search for the bell...every bus differs...I let go of my seat...press... re-grip my seat... phew... safe again....

I wait until the bus comes to a complete stop before I move. Meerkat stares from passengers ....steps are extra slow as my left leg sleeps. 

Finally the step challenge rears its head again...this stop is in the road.. no kerb to reduce the height. Tentatively I drop my foot onto the ground pulling my other behind. Aerobic workout complete...now a few minutes walk to Pilates...

Everyone should have one!

The perfumed aroma of fresh manure fills my nose, gloves make grasping fistfuls of straw and horse muck almost a pleasure..no peg on my nose.. I am becoming immune...

Lottie the allotment is looking well, she grins a green grass smile as we approach; the sun performs a glorious welcome amidst a pure blue sky...

We tackle listed jobs, the ninth bed sighs as we fill her with dark brown compost from last summers flower tubs, she will soon be nursing raspberry canes and gooseberries. I sit on my throne, an upturned water-butt stand, and settle twenty strawberry plants into the rhubarb bed...better than being joined by my bum! Mr H does the heavy work trundling to and fro from the water trough with full watering cans...

Snacks accompany regular breaks, my oatcake sandwich surprise has Mr H grinning (oatcakes stuck together with a spread of lemon curd..savoury and sweet... yummy), Jamie Oliver beware.... On my deck chair I tilt my face up to smile at the sun, my skin rejoices ...at last spring is in the air...

Fellow allotment holders stop to chat, they ask if I will be doing cream teas once the shed is up; yes of course and champagne...Mr H wants Rachel de Thame from Gardeners World to cut the red ribbon.... In that case I will invite Monty Don!

Back at home our red faces glow with satisfaction as bacon sandwiches are munched. Then Mr H falls asleep on the sofa....

My nephew must not be told I am eating bacon  I am a vegetarian..uh hum...well a pesce-crispybaco-tarian.....he says I am attention seeking!!

Extreme emotions... my new normal

Calm used to be my middle name. Now.. Frustration. Anger. Laughter. Fed-up-ness. Giggles. Tears. ...are as unpredictable as wind on a calm day..

My Dad used to say his bladder was too close to his eyes..I too am good at the waterworks... now I could fill a reservoir...drought...not in our house....

At the moment my OK and Not OK balance on an uneven pendulum. The latest test of endurance is the news that I have A TEN PERCENT CHANCE OF GETTING MY SEIZURES UNDER CONTROL. Yes I am shouting!! I have tried so many epilepsy drugs now my chance of getting back behind Dorothys' driving seat slides beyond my grip, like a boat moving down the slipway into the sea...

Benign tumour indeed...

I recently read a snippet from the Canadian Brain Tumour Foundation on Hammer Outs website  Myths about Brain Tumours Two points poke me in the eye...

• The end of treatment does not mean the end of the experience of having a brain tumour and the person may need to adapt to a “new normal” depending on long-term effects the person may have from treatment....I add in here and complications...
• Any brain tumour is life-changing regardless of grade or stage.

These points take me back to the Neurosurgery Registrars wise words when I was first told I had a brain tumour..if benign you will live but it will be a different life...I am reminded daily of the truth of those words...

My New Normal...I like that ....But my friends would say I have never been normal...Ha ha

My anger and frustration fizzle...

I dig deep to find my coping strategy for this one...maybe I will be in the ten percent group that the new drugs I am about to try, capture...if not there is always public transport, my wobbly legs and the gift of lifts from friends...

The Rug of Hope

Hope is everything

I hope to laugh as much as I cry, 

Dance as much as I stand still, 

Cope as much as I can, 

Live for today,

Find the strength to accept my changing reality.

Me

Escape to the sea

The blue sky wakes me, the sun shine makes me smile, a day for a trip if only I could drive .... memories of days at sea float into my mind...The waves lift the boat free of the sea, my stomach jumps with joy as I grasp the life buoy holding me upright. The sea holds my heart in its hands. I squeal and point when the first whhhoosshh of spray goes up. A grey head and fin breaks the surface. Fellow Caribbean travellers run around the boat to get a closer look, I stay put. Any attempt to move on the rocking boat will leave me doing breast stroke on the floor. I tell Mr H and our new friends to chase it; the grey wonders will perform their show in front of me soon enough....

The sea has been my companion throughout my BT journey. During my frequent visits to the CT and MRI scanners I close my eyes and go back to the sea in Florida. As the warm salty water washes over my toes I feel for sharp edges; I bend and dig, lifting the multi coloured wonders served up by the sea..to add to my collection. The sun pierces my skin as I hold my face up to soak in its sunflower beauty...

In my hospital bed unable to sleep, I visit Lyme Regis a small seaside town where a magical summer holiday had been spent with my friend and her parents Lottie and Albert!  Each day we woke to the sky as blue as the Caribbean sea. The sun pierced the sky from dawn to dusk and we lay on the beach from morning to late afternoon sizzling in factor 2 suntan oil....treated each day to cream buns fetched from the local cake shop; fresher than the fish from the sea...


My recovery was not as quick as expected and as dark days set in I craved an escape.  I dreamt of a cottage overlooking the sea, decorated with nautical blues and whites...long walks over cliff paths as waves hit the rocks below. Afternoon tea in the seaside garden surrounded by the sweet smell of roses as I stared at the sea...buns oozing cream fetched from the cake shop...

I was trying to escape me....

Driving licence reinstated in 2011 I book a hotel in Lyme Regis, pack my new MINI, enlist the driving skills of my niece and set off on my first adventure. Insisting I drive until tired... then Lois takes over... two giggling girls head for the sea...ipod blaring music...living my dream...
Until my licence was stolen again...


Twenty years from now you

Lyme Regis August 2011

 will be more disappointed
 by the things you didn't do 
than by the ones that you did.
So throw off the bow lines.
Sail away from the safe harbour.
Catch the trade winds in your sails.
Explore. Dream. Discover.
Unknown

Energy; if only I had bottled it

Running shoes on I pounded the pavements; I walked miles in pursuit of a bird in flight, teased by the flash of pink and black...a long tailed tit...its family would follow.  

My 80 year old Mom sets the pace when we go out for an Easter walk, I  follow, Mom slows the pace by walking behind me. Children run around as the sun lights up their faces; they search for eggs, I take all the short cuts.

Energy is expensive. To use it comes at a cost. When I wake I do my first test with my 'Energometer'.  A shower is the barometer; if the towel is heavy then my overnight recharge has not been effective; a lie on the bed after the shower, I am on red. If I progress to breakfast without dropping things then my plans for the day stand a chance.... chores complete and the sofa calls.... I will have to get a later bus or ditch my outing.....

If I had known how valuable energy would be I would have filled every bottle, jar and Tupperware container until the lids were bursting... 

My energometer is a sophisticated tool; a calculation is required; 

                 Action  + Time + Energy Needed 

                   -----------------------------------------                          = Do. Delay or Don't Do

  Energometer Level of Fatigue (Zero, Red, Amber, Green)

My Mom has had years to develop her technique which I admire but constantly fail to apply. Her success is down to Cat Naps. She wakes has breakfast, does chores then Cat Naps. Shops or goes to craft, has lunch then Cat Naps. Out again, or irons then Cat Naps. Eats Tea then puts on a programme she really wants to see and Cat Naps....

I have been told about this concept of pacing but have yet to consistently apply it. Energy in the bank is for me like chocolate in the fridge it has to be consumed...

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