New kitchen and downstairs loo but what about my briefcase?

I want one I tell Mr H

Want what?

a loo downstairs..and a new kitchen...

It has taken a long time to save enough shekels to pay for them, but now in the planning stage every morning is like Christmas when I imagine stepping into my loo downstairs instead of delaying the moment till I have to haul myself up my two railed, thirteen stairs...again! Sometimes my delay is too long, too tired to climb the mountain... then...oops!  Mr H has even found me in the utility having a virtual wee I am that excited!

The kitchen has become my excuse, apart from fatigue, not to cook. Well I do prepare meals but I regularly play the Ping tune. Too many red patches on my hands when I try to bend to pull food out of the low hot oven; too many pools of milk on the floor by the low fridge. I have so much blueberry rolling practice up my sleeve I think I will start an Olympic sport.

I will have to do the kitchen and utility sort out in dribs and drabs so it will be a longish term project. I even conned Mr H into clearing out the garage by telling him the kitchen fitter said we couldn't have one if it wasn't empty. Ha! One skip later and the job is done!

I found a plastic carrier bag with over three hundred cards and letters I received when I was first poorly. I re read the cards and letters with a chimney of tears running down my cheeks then decided they had to go, time to move on.






But when I pulled my briefcase out of the back of a cupboard it started a tug of war.  Keep it? Give it away? It was a treasured gift from work colleagues. I think I was given this prize possession when I moved to my job in Wales, but I am not totally, no doubt kinda sure.  My brain does that nowadays; creates black holes in my memory. The briefcase has worked hard. It held onto my university student card and carried my papers when I studied for my MSc, cared for work papers as I travelled to and from meetings and offices...it still wears it's leather shiny coat.

Trouble is I don't think I could carry it any longer. When I walk I need my stick and a free hand because my left foot smugly decides at a moments notice to glue himself to the floor (notice it's an awkward male!). Last week I launched forward and grabbed the arm of a lady in front who turned with a scathing stare to see me gathering my balance. I thanked her for unknowingly stopping my fall and she went on her way.

So the briefcase. You've got to let me know, should it stay or should it go (The Clash!)

Memory Lane, Ten Thousand Books, a Taxi and Four Bananas

On the Number 63 Mum entertains me with a chirpy trip down Memory Lane, the snippets slip into the ears of the people behind us too.

...the craft shop used to be on the left but now it's on the right...I used to go to Sainsburys here and catch the bus straight back with my bags...your Dad's Cousin's Wife's family used to own the Pins and Needles shop, look on the right, oh it's closed down now...

Oh look I add when I find a chatter gap, the Gunmakers Arms is boarded up, that's where I tasted my first glass of cider and black; but my comments disappear in the back of the bus, Mum has forgotten to put her hearing aid in!

We meander along the pavements I trod on my way to and from nightclubs...

The Council House

I click my camera as once familiar sights now stop me in my tracks.

Town Hall

Meet the Floosie in the Jacuzzi!

Then the Mecanoo Library shouts it's welcome...

Inside we fly from floor to floor on sky blue escalators, each one sharing it's 1000 books.

Secret gardens lead us to the Memorial Library where grey haired books fill glass covered shelves while Shakespeare looks on bemused.

The Memorial Room has been relocated from the original Library

The  ceiling carvings mingle with the light

Mum gazes in as Shakespeare looks out

Ten floors of a thousand books make our excited legs falter so we treat ourselves to lunch amidst the Symphony Hall musicians next door.

Mums blue eyed gaze drills into mine as she says:

Let's get a Taxi home, you look tired and I am pretty worn out too; but when we get back I must buy more bananas (Mum always buys a couple of bananas for me as I nibble on one to ease the nausea when a seizure creeps in)...

I grin and suggest we go wild and buy four....

I just can't make scones

Like a panda Mr H has his head amongst the bamboo as leaf covered stems swish through the air hitting the ground at my feet. 

Sitting on our blue bench I strip leaves from the canes; soon to be the climbing frame for my peas as they sprout juicy green pods at the allotment.

The sun sizzles on my left foot and shoulder so I slip inside for respite as clotted cream cries from the fridge:

I need scones...

Like slipping on a comfortable pair of shoes I pull my Nans Bero book off the shelf. A food processor short cut means ten minutes later the smell of baking wafts into the garden and Mr H pops his head around the back door with a grin.

My scones from this book are always so light they float above the plate.





But disappointment oozes from my pores as I lift the trays out of the oven . My scones should have risen as tall as Mount Everest, instead they are as flat as the Norfolk Broads.

I blame my scone failure on poor old BT; but it could be the out of date flour...

An extra dollop of clotted cream, a thick sandwich of home made blackcurrant jam and blissfully unaware Mr H sinks his teeth in.

Idle at the Allotment - I am a Spoonie

I drag the deck chair out of the shed when we arrive at the allotment and sigh with relief as my green chair snaps open. I drop down into the seat as I ease my camera out of my blue shorts.

I watch Mr H wander off to fill the watering cans from the water trough; the water splashes as he expectantly plonks the full cans down beside me:

With a cough I remind him I am not doing anything; my energy cans are empty.





Well... I will pick the ripe strawberries peeking from under their net and snap at the growing vegetables.









Back  home I research 'empty watering cans' and come across the Spoon Theory by Christine Miserandino. I too am a Spoonie and today I have run out of spoons.

Christines' theory is a simple analogy describing spoons as a unit of energy. She suggests that most people, particularly the young, start the day with an unlimited amount of spoons hence  the energy to do what they desire! People with a chronic illness have to plan each day on the basis of how many spoons they wake with; each activity in the day will cost a spoon; showering, dressing, breakfast and so on. Activities have to be tailored accordingly.

At the moment I am changing my epilepsy drugs so my spoon allocation each day is low. Today I woke with ten spoons and have used nine before we went to the allotment; hence my 'idleness' and joy at the sight of my deckchair...

By the way Mr H and I are starting a UK Allotment Holders version of 'Attraction' This years Britain's Got Talent Winners!!

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...

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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