Brain Blancmange

I grab Mr H's handrail arm as I cautiously step out of a café into the golden, bright blue sky day. The heat bites into my shoulders with its sharp teeth as we amble down the hill on narrow, knobbly pavements. I try not to step into the busy road as we pass shops crammed with curios and cakes. 

My walking is slower than my normal snail stepping speed and I mutter to Mr H:

My head feels like wobbly blancmange. My brain is mushed. Its three steps behind me I say as I glance behind and with a hesitant step hope that it will catch me up.

I clasp Mr H's arm tighter as we cross the road. My head droops. A concentrated frown fixed to my face. 

I will my brain to follow me, catch me up. I can't lose it. Leave it behind.

Mr H leads me into a second hand bookshop. It is so full of books, comics, old typewriters, even a harpsichord  my blancmange like brain decides to stay at the door. I stumble past books piled on the floor. My eyes dart from corner to corner, shelf to shelf desperate to find a chair.

I need to sit I whisper.

Now!

Mr H scans the shop but can only locate a set of old wooden steps. I perch on the third rung. Stare blankly at the floor as the blancmange spreads into every crevice and crinkle of my brain. My stomach rises into my chest. I call this familiar feeling nausea. 

I stare at Mr H's red freckled legs as he stands protectively by my side. How do you feel he asks.

Awful

Sick...

I sweep my dusty hand across my forehead. Pull my hair away from my skull.  Lift my head and glance at the doorway. Fresh air.

A clock ticks away five minutes. Ten. I slowly ease my head off my shoulders. Look around. The corners of my mouth twitch into the start of a smile. My brain wafts through the door and slips back into place and...





like clouds in the sky, 
the blancmange gradually dissolves 
as the sunshine returns.





Feeling better?

Outside again Mr H firmly grips my hand as we cross the same road and walk towards a bench. I plonk myself down with a thump. Dipping my hand into our bag I pull out chunks of a crumbly Dorset scone which I greedily cram into my mouth. With each bite I feel the colour return to my cheeks. I look into Mr H's eyes and smile as seagulls sing their squawking song overhead.

Ten minutes later I stand, my post seizure brain now fully rested and restored. I wave goodbye to the wobbly blancmange as we walk, hand in hand, past ice cream stalls, a pebbly beach and shops selling sun hats, buckets and spades...

 

Chemotherapy messes with my Epilepsy

Someone has opened the tap on my feet and drained all my energy. I need to lie down. I  stare at three abandoned blog posts on my laptop. Only two lines in each. A fleeting idea captured but nothing else flows from my foggy brain...

It is day 7 of my fourth Chemo cycle. Two thirds of the way through!  I sigh with relief as the nausea waves it's farewell, off on a holiday for a couple of weeks. Recently we too tried to go away to the coast...

During the first night away, I become aware that I am lying on a hard scratchy surface. Like slowly awakening from an anaesthetic, the cool hard floor presses into my hat covered head and bare legs. I don't move, I just idly wonder why I am there. A while later I surface again;  I am still on the floor by the bathroom. I try to move but can't...I call out to Mr H. 

The next thing I hear is Mr H saying my name...

Dawn, Dawn wake up you are scaring me...

I open my eyes. I am lying on my side, still on the scratchy hard carpet

Stand up, I need you to stand up 

I crawl, dragging my rigid left leg to the bed, then Mr H calls for an ambulance. 

I don't know where we are I hear him say as he paces the floor to grab the hotel brochure. Out of the recesses of my Sat Nav brain I mutter a postcode which he repeats into the phone...says yes and no and about thirty times before sitting bedside me as I shake, and twitch, rubbing my lamp post leg...

In A&E the Consultant concludes; No sepsis. A series of Tonic Clonic seizures... (The first Tonic Clonic I have had since my initial one in 2008) I tell him the Oncologist has said the Chemotherapy may disrupt my epilepsy...

At 05.30hrs, still wrapped in my dressing gown we Sat Nav our way back to the hotel. We rest. for a while, eat breakfast then pack and re-navigate the journey home, less than a day after we arrived...

I thought you were having a stroke Mr H tells me in the car, you had one (seizure) then another without coming round. I put you in the recovery position but you didn't respond...

No more holidays for us until the Chemo is complete!

Epilepsy Action Advice if you witness me or someone else having a seizure

Do...

• Protect the person from injury - (remove harmful objects from nearby)
• Cushion their head
• Look for an epilepsy identity card or identity jewellery
• Aid breathing by gently placing them in the recovery position once the seizure has finished (see pictures)
• Stay with the person until recovery is complete
• Be calmly reassuring

Don't...

• Restrain the person’s movements
• Put anything in the person’s mouth
• Try to move them unless they are in danger
• Give them anything to eat or drink until they are fully recovered
• Attempt to bring them round

Call for an ambulance if...

• You know it is the person’s first seizure, or
• The seizure continues for more than five minutes, or
• One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or
• The person is injured during the seizure, or
• You believe the person needs urgent medical attention

Meeting epilepsy at the crossroads

The satnav blinks in confusion

Turn around when possible

But behind is a sky of sparks

Packets of pink and white at every turn

I wonder if right is right

Stop the old continue the new

I try a left turn

Cotton wool fireworks follow

Springs of tears fall

A voyage to Twitter land and

a Tweet shows the way

Head on into life

@epilepsyaction 

Epilepsy Action

Technorati Tags

Epilepsy, Epilepsy-Action, Seizures

Juggling seizures

I woke under water this morning but my swim is this afternoon.

I empty coffee into a mug and hope I will surface.

The last few days my Simple Focal/Partial Seizures have been bouncing around like a clown. 

The nausea teases then 'strangeness' in my head follows before momentary sadness and painted on tears complete the show.

The pill swap takes eight weeks at best.  I have three epilepsy drugs up in the air, adding one in like an extra ball while the old one is gradually dropped. 

Last night I threw in more of the new to whip the seizures into oblivion.

Today I flit from one uncompleted task to another.

This time at least I have enough energy to enjoy sunshine and flowers in our garden; I hope you do too....

Technorati Tags
seizures, epilepsy, anti-epilepsy-drugs

Head Case - Episode Two

I slept well last night, I knew how to sleep without ripping the wires out of the recorder or off my head! Another wash at the sink this morning, I I can't wait to get the web of wires removed so that I can have a shower and wash my hair.

I tried two approaches to carrying the wires around:

1. The dangling down my back style
2, The front shoulder approach m


I found the back dangler pulled gently on my hair and irritated me. The
front shoulder was more comfortable and reminded me of when I plaited my long brown hair many years ago.

No, I am not naturally blond, good job I had my roots done before this event. 

After my surgery I was not allowed to dye my hair for ages so the grey shone through; I hadn't realised I had any! Eventually I had it coloured to match my natural darkish brown mmmm, then gradually became bombshell blond again.





I digress. 


So today the wires came off with only the odd sting, the smell of acetone replaced the super glue and became my new perfume. The clear advice given by the excellent physiologist worked. Twenty gorgeous minutes in a warm shower, two washes, two conditions and lots of combing and the job was done, minus a few hairs mind you!

Now I wait  for the results, but at least I know something is happening in my grey matter....

I am off to treat myself to a cappuccino at my second home; but no cake I am on a diet!

Head Case - Episode One

I am having a 48hr outpatient Ambulatory (walking about) EEG (Electroencephalogram) to record any epileptic activity as my drugs are not controlling all my seizures.

First the Neuro Physiologist, measures my head; ladies size I hope; then she marks twenty five spots evenly around my scalp. She scratches the skin at each spot, it feels like a tiny emery board (for the men, that’s a cardboard nail file); certainly nothing like a session of leg waxing!

The smell of the super glue fills the air as the electrodes are secured to the spots.  I fire question after question like bullets at the lovely lady. The wires are hooked up to my recorder – some of you as 'young' as me will understand when I say it's a bit bigger than the size of a Sony  Walkman (15cm x 10cm). 




I have to record my meals, any episodes, attacks or seizures and a general summary of my activity. I have no intention of writing about the cake I eat!


I must press a red ‘event’ button attached to the recorder if I feel any symptoms.

I carry the recorder like a small handbag across my body but I won't be swapping it for one of my Radley handbags.

 I leave feeling a bit like lady Frankenstein but the words of ‘Wendelly’ my friend at our local café make me feel better: ooohhh the wires are all different colours; they look lovely!

When Mr H came home he asked if I had hurt my neck,

No I am just getting used to the presence of the wires

The plait of wires slips down my back and gently tugs on my head to remind me they are still there. I can't feel anything else, the recorder is silent.

I nervously press the red button as though it will burn my fingers when nausea rises from its rest and my cotton wool head appears; no tears this time.

I feel anxious for the first few hours, questions buzz in my mind and I get agitated when I accidentally catch an electrode on my woolly hat; but as the hours pass, like the Buddha I become calm and contemplative

I manage to catch a few zzzzzz, the wires are long enough to be able to turn in bed and I wedge the recorder down the side of my bed lever which I use to help turn over. My sleep is light, a wash at the sink this morning was easy and reminds me how far I have come since the many weeks of washes by my hospital bed when I couldn't stand or walk .

Back to the hospital this morning for a battery change...