Tales from the Ward Chapter 39 and 40

Chapter 39: A Cacophony of Disapproval

I’m in the physio gym with Pilar my physio. She’s trying to prod my outstretched legs to lift up. Come on come on, she says as she lightly prods my ankle into action.
I’m breathing pretty hard considering how simple this exercise is to an able bodied person.
In the process rather than grunting like a weight lifter with the effort I’m emitting a small squeal like a deflating balloon.
Across the room Noelle is demanding her training record to be marked with a gold star for every five second period she keeps her legs separated. She’s up to four and a half. And argues for a five. It seems petty but her childish expectations are becoming familar. It motivates her. I know how hard I’m trying to get even 10 millimetres of air under my leg so I can’t really criticise.
She starts singing another of her unrecognizable off key pop songs.
Giovanni is moaning his physio Alessandro is hurting him, like most days. But he joins Noelle in a tuneless duet. The performance makes me groan.
Steph doesn’t like me singing, Noelle proclaims.
No please stop.
Giovanni laughs and begins to serenade his gym partner been louder.
Down the corridor i can hear faint yelps from someone’s therapy dog.

Chapter 40: In the bleak mid winter

You know the day is going to be less than tropical when even your catheter’s night bag contains ice crystals.
The radiator is on at full blast but It’s not cutting into the chill.
Accuweather says It’s only two degrees outside with a ‘real feel’ of minus six ie fookin freezing, felt even more because I’m unable to move around and it’s my first winter in 21 years.
In the summer I could happily sleep with just a sheet over me, sometimes not even that. But as the year has progressed the amount of covers have increased with it.
Last night’s layers were socks, sheet, polar fleece blanket, and wool shawl over my legs. When even all that couldn’t stop me shivering the staff had to dig out a duvet for me.
Now at midday the temperature is a steamy six degrees (real feel minus two) and having prised me out of my nighttime layers into fleece lined trousers a fleece jacket with wool shawl on my legs I’m seriously thinking about my fingerless gloves to keep my hands warm.
Earlier this year I expressed an interest in a Loughborough University study on how heat affects people with MS. The chief researcher wanted to know if cold affected me in the same way.
I can definitively say yes.
My nose is dripping like a wet dog’s.
And it’s not even really winter. Yet.

You can find out more about me and help my fundraiser by visiting youcaring.com/savestephaniescawen

 

 

More Tales from the Ward…

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New challenges, old problems, familiar faces

Chapter 35: The return

Three and a half months after being kicked out of rehab I’ve arrived back in the clink.

This one though is a specialist Neuro centre, where positive reinforcement helps even the most afflicted.

Stroke victims, people with brain injury and others with yet to be diagnosed odd things.
I’m reunited with quadriplegia who’s been taking her first tentative steps.

As we meet I eye the can of Pepsi she’s drinking and able to hold by hand.
My first words: You can cut that shit out.

Good to see you too sweetheart, comes the reply.

It’s good to see her up right and able to move rather than flat on her back feeling nothing.

The rehab centre not only makes sure she gets out of bed, she’s been allowed out the building to a rock concert and even a few bars. Not that they’re encouraging her to drink, she doesn’t.

It’s cold now and dark early. Sun’s up gone seven and down just after four. Winter is upon us, and up north there is snow and frost. Actually everything’s been cold since ambient average temperatures dropped below 25 degrees as far as I’m concerned.

It genuinely is freezing and I’m wearing leg warmers for the first time in 30-odd years.

Facebook is trending the best Xmas ad and it’s not even December.

The food looks similar to the other hospital, though there’s a supermarket across the road just in case.

There are four branches of wards all leading off from the central reception. It’s not quite Prisoner Cell Block H. But I can’t help thinking Open Prison and doors to the outside are in fact locked. Actually I can’t even get out of my wing. My unit is secure.

I’m in the complex care section and my room is on the quiet side.
I can still hear Mitchell shouting from the other.

 Chapter 36: The United Nations of nursing

Good job I’m not a racist or Brexiteer. Don’t think I’d be able to cope.
One week here and so far I’ve met:
From Africa: 1 Nigerian 2 Ghanians 1 South African 1 Cameroonian 1 Moroccan 1 Mauritian
From Europe: 2 Poles 2 Romanians 2 Lithuanians 1 Latvian 2 Greek 2 Spaniards
From Asia: numerous Filipina
The Brits are most definitely in the minority here.

I am of course aiming to be fluent in several other languages by the time I leave 😊
Mastering the basics of course is just the start.
So in no particular order and spelling definitely incorrect:
Thank you
Achòo (Lithuania)
Mee dasi(Ghana)
Salamat P.o (Philippines)
Nkosi (Xhosa)
Ashima (Nigerian)

Polish I have no idea but I’m sure there will be a combination of consonants including a Z.

My daily ritual up at 7 breakfast at 8.30 the first of two physio sessions.
In the morning it begins with stretching and then improving muscle strength. There is no CAN’T only TRY. The attitude of the staff is only to give positive reinforcement not chastise when a patient says something negative.

It’s polar opposite to how I’m perceived in the state health system.

Yesterday I watched as a stroke patient refused to work any more because his leg hurt. Was it really hurt or just tired? Even the patient wasnt sure. They listened and distracted him sufficiently to then suggest he work again which he did without complaint.
The attention is constant and detailed.

Therapy is not just physical but also psychological.

I find threatening the physio with violence motivational, but generally just met with laughter.

Later in the day I have occupational therapy to strengthen my arm and work on the fingers of my left hand. My index finger is mostly curled making pen holding almost impossible.

We spend about 20 minutes on this finger alone aiming to stretch it to its full length and extent my entire palm. It’s tough and I wonder if it’s worth it but the following morning my hand and fingers are straighter.
Now to repeat several times a day every day.

Chapter 37: New characters old problems

Noelle had tried to commit suicide by gassing herself.

The build up of carbon monoxide in her blood failed to kill her thankfully but left her partially paraplegic. She can stand, lucky her, with encouragement, but is full of anxieties.

A perceived sleight when things don’t go quite to plan often results in a childlike meltdown and tears.

Reassurance is needed. Often.

Her husband has taken her credit card. Liberal spending on Amazon was becoming expensive.
But she gets it.

Steph’ s ok she declares. (Phew) She’s one of the few non crazies here.

Top of the driving every one else crazy is Mitchell. Constantly pleading: let me out of here!
But to look at him it’s hard to know if this is a request to escape the ward or escape the body he’s now trapped in.

His speech is slurred I guess from a stroke and it’s quite hard to understand him. He seems acutely frustrated. Why is he now in a wheelchair and not able to communicate well?

Perhaps, in true British style when addressing foreigners, he’s thinking: If I say it loud enough long enough people will understand me.
Why do they just tell me to shut up?

At lunch he takes a few mouthfuls, claims he’s no longer hungry and wants to return to his room. In the next moment demands he wants to eat again.

Cliff is not allowed seconds. He’s very over weight with a 9-month belly and has been told he must lose the excess kilos. He is another of Carol’s husbands who responds to ‘how are you?’ With ‘same shit different day’.

I know that feeling. He’s also in a chair, the result of a stroke brought on after watching a football match. He can’t remember who was playing or who won.

Chapter 38: Physio

I’m sure Djokic is happy the bean bags I’m throwing at him are soft and not made of brick.
He seems amused by the fact I’m aiming for his head.

Is he really just a sadist masquerading as an Occupational Therapist or just someone who enjoys the challenge of trying to piss me off.
Oh wait, isn’t that the same thing?

He grows quiet when I mockingly suggest he has a darker past. Is that because he does, or that maybe he doesn’t share my sense of humour? Maybe it really isn’t funny? Jokes don’t translate well, I find.

Anyway, I’m throwing the damn things as far as I can – and that’s with my good arm.
I’ve never had the speed of a baseball pitcher and the bags are barely aerodynamic so there’s a cat in hell’s chance of me making contact.

Plus he artfully steps out the way and out of range of the soft touch slow-moving missile.
The smirk on his face as I screw mine up in frustration just makes things worse.

After this there’s the bending forward in my chair to see how far I go before I face plant exercise.
I swallow my desire to call him an utter bastard because I know that will only make him laugh.

Then we do the same thing going backwards. I’m meant to pull myself forward using my stomach muscles. His response to my protests of: ‘I’m not a frickin limbo dancer’ as my spine bends back almost at 90 degrees are simple: Go on you can do it.

Not. Effing. Helping.

You can help me by donating and sharing my story. Please go to: #youcaring.com/savestephaniescawen

 

Tales from the Ward Chapter 34:

Confessions

Forgive me Father, for I have sinned.

I’m no Catholic, but when you’re lying on your bed, with a guy trying to place your knee to your chest, and you’re unable to think of a single swear word, let alone say one, you know you’re in trouble.

And as anyone who knows me can confirm: I can make a sailor blush, so it must be bad 🙂

Yesterday I spent a stupid amount of money for what can only be described as an hour of cruel and unusual punishment.  Sixty minutes of virtually unrelenting pain as my otherwise wonderful physio contorted my limbs into positions they really did not want to go.

Torture, in case you’re wondering, is defined as an act of inflicting excruciating pain. I think come visit me on a Saturday afternoon and see it inflicted on someone who’s actually paying for it.

And trust me, when I tell you I ain’t got no BDSM fetish.

When I was a gym bunny the only point of exercise, I used to say, was to do the stretching after. Teasing out the muscle fibres and detaching them from themselves and all of the connective tissue in between.

Stretching’s more important now as my muscles get quite tense and inflexible. And I need their ability to expand and release if I’m to regain my ability to stand.

At this moment poking my eyes out with sharp sticks would be a more preferable form of pain management than forcing my bent legs straight.

A good analogy would be thinking of an envelope that’s been sealed with a super-glue that’s gone cold and become inflexible, and then trying to open it without tearing or ripping.

The fibres of my muscles are the envelope’s edges tightly sealed. And they sting when touched, even lightly.

Each stretch results in a minuscule tear separating the fibres from the glue. It’s been over six months since any physio-terrorist did this.

I’m trying not to scream, but tears are streaming down my face and I’m struggling for breath. If this was real torture I would have passed out some minutes ago.

The conversation goes a bit like this:

Ok, bit further, bit further, argh *&@##!!

A sailor blushes.

Sound of deep breaths

Again

And repeat.

Several times.

Until finally: No stop, I can’t take it anymore. I’ll sign anything. Give me a pen, I did it, It’s my fault. I confess.

Very well. Your signature here please and that will be £80.

Same time next week? 🙂

youcaring.com/savestephaniescawen

 

 

 

The Driving Test

Tales from the Ward: Chapter 33

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I always remember the day I took my driving test 30 odd years ago, not just because it was Guy Fawkes night (November 5 for non-Brits where the 1605 foiled plot to blow up the House of Lords by Guy Fawkes and others is celebrated with fireworks and bonfires – the Great Gunpowder Plot)

But also that I got my licence at all after driving through a light turning red on the way back to the test centre.

No written exams then, new drivers, just a few questions out the Highway Code, a mandatory hill start and a reversing round the corner (who does that?)

And while I’m on the subject of who can do what these days while driving, I can remember simultaneously smoking a fag and navigating myself around London using a hand-held A-Z book with no problem.

GPS my arse…

Anyway, someone from the Great Ship social services has deemed I qualify for an electric wheelchair and I’ve received a letter summonsing me to the Test Centre.

After a very quick indoor lesson – press this to go – I’m sent out. My wheels have a top speed of 4mph so you’d think there’d be no danger of an accident. They weren’t expecting the old guy bent over with two sticks walking very slowly past the exit.

The joist-like steering is hyper-sensitive and it takes a few corners to get used to the handling.

But another few corners later and #LewisHamilton would be proud. I’m out onto the mean streets of somewhere by the sea, past the chippie and the Wedding dress shop and we’re going so slow I can inhale the Monday morning brew at the coffee shop and smell last night’s lemon chicken from Proud Hong Kong Chinese takeaway.

I have a tense few moments before I know if I’ve passed. The answer’s a resounding Yes. First time again.

Only a two month wait before it can be delivered.

Just in time for Christmas.

Don’t forget to share my story youcaring.com/savestephaniescawen

 

Tales from the Ward Chapter 30: My world view

I need your help

spider

So my apologies.

I’ve been very quiet of late busy battling British public health service bureaucracy and going nowhere fast.

As any Brit will tell you right now the NHS is broke and the services they offer are shrinking every day. Travel is but a distant dream for me now as is independent living. I need carers to help me get up in the morning and to go to bed.

I’m currently effectively house bound – my once worldwide travels have narrowed to my room in Suffolk with a view of the spider living on the other side of the window. Here he is this morning having disposed of the cranefly his web caught yesterday.

The rehab I was receiving was ended before I had reached any of my rehabilitation goals,

So now I’m turning to you all for your help to help fund a stay in proper neuro rehab with the aim of regaining my independence and getting my life back.

The NHS doesn’t have the funds or the inclination right now to fund cases like mine, so I’m hoping to raise enough funds for a three month stay.

My friend Lisa Distelheim Barron has set up this Youcaring page for me.
You can go directly to the site at YouCaring
 to make a donation.

Thanking you in advance for your kindness and generosity.

 

Tall stories and goodbyes…more from the ward

Chapter 24: Canterbury Tales

There’s a new kid on the block. From the town not too far away. Married at 18 for 72 years to Dorothy who died earlier this year. Three children and countless grandchildren and god knows how many great grand kids.

You can’t keep up in the end, says Joan. Every Christmas it seems there’s another one. Of course you love them but you think surely not more.

My new lunch partner has had a stroke but he seems sprightly enough.

He tells us stories of being stationed in Inverness when he was in the army.

After the war he worked in a local print works in the typesetting department.

He says he can’t see very well anymore but he can see the lettering on the ketchup sachet without too much problem.

I used to set 5pt print.

Wow, I say, that’s tiny, thinking back to my very first job in newspapers 30 odd years ago when typewriters, blacks and setters were king.

And then Murdoch’s fight with the printers a few years later.

All single lettering, he says.
No block set words? I ask.

Oh no.

I can only use a computer now, I say.

I’m not sure of his name and feel too embarrassed to ask. I can’t see his wrist band so finally I ask.

What’s your name?

Jeffrey like Chaucer

Oh, can you write like him? I joke

No, but I can tell a damn good tale.

 Chapter 25:Departure hall

Into God’s waiting room at the nursing home went Marjorie 91.

She’d become increasingly confused after being told she was going to a new home.

Trying to get up in the middle of the night. She’d wake me calling for help but I chose to ignore her. She wasn’t really my problem, and besides I wouldn’t be going with her.

I tried explaining that she was changing homes, but to try tell her she wasn’t going home to her daughter Gillian’s was too complicated.

She was exhausting and I tried to steer clear in the last few days.

How she didn’t fall I don’t know.

She keeps crying fearing she has hurt someone.

Gillian tells me she and her husband can’t cope any more.

He won’t come to see her. My daughters will only come every now and again.
We want to go away for few days. I feel terrible but a nursing home is best for all of us.

The care assistants ask her if she needs the toilet after finally answering her calls for help.

I don’t know. I’ll do what you want.

No Marjorie we’ll help you do what you want. So what do you want?

I don’t know. I might need the toilet.

Shall we go then?

Ok if you say so.

Then later I’d hear the rapid clank of her walking frame as she climbs out of bed and is half way to the loo before anyone notices.

I could have called out, but again when and why should I take on the responsibility of looking after someone I happen to share the same bed space with?

Betty had gone the day before. Now her daughters were back from vacation there was no reason to keep her in.

At night she’d be in a snore-fest with Joan, the pair snorting a duet loud enough to wake the dead.

Then competing in a choke-cough off also with Joan. I tried to guess which of the pair might expire first. Betty choking on her lungs or Joan coughing them up.

There was no point waking them to tell them to be quiet.

It would be dawn soon.

 

Tales from the Ward: Kittens and the SheWee

 Chapter 21: Kittens in the bed clothes

I could tell I wasn’t going to get much sleep when I saw Joan talking to someone.
What’s that Joan i ask.
Oh just talking to my son.
I don’t know whether to tell her she’s hallucinating.
But I don’t. Is that unkind of me?
She’s swapped beds with Sheila because she’s been getting out of bed and falling and the nurses want to keep a closer eye on her.
I ask one of the nurses why have you dumped a ranting jumper on me?
Well that’s better than a jumping ranter comes the reply.
I paused thinking.
Well yes maybe.
Joan is rummaging around with the sheets on her bed.
What’s up now?
There’s an animal in my bed. I think it’s a kitten.
Well a kitten won’t hurt you I say trying to reassure her. It’s probably trying to find somewhere warm and safe to sleep.
Oh I don’t mind cats. It’s snakes I wouldn’t want in my bed.
Neither would I but there aren’t any big snakes in England.
I thought of the 1 metre cobra that lived around my condo in Malaysia.
Last seen after consuming a full litter of six Persian greys over the course of a week. One kitten a day.
I decided not to tell her that bit.

Chapter 22: Conversations in the night time

I now know the names of Joan’s children.

Darren is the naughty one – the frequent subject of admonition for bad behaviour.
Then there’s a Michael and a John.

Sometimes you can hear the anger on her voice. Others It’s pleading: please don’t do that.

She’s apparently recalling moments from a long forgotten past.
But why?

Is it because she’s sad at how life has turned out or because it was a serious or dangerous incident?

Or because she feels like she’s failed her kids or her kids have failed her?

Impossible to know. She certainly won’t know if I ask her now.
Then shouting: sorry for waking you all up.
I think you haven’t given me the chance to get to sleep yet.
Finally at about 4am she passes out.

After the day shift starts Joan is still unconscious. Her mouth is wide open.
I joke with the nurses asking if they can apply a gag tonight.
No, they say.

Good job I can’t get out of bed independently then to do it myself.
Yes just as well.

How how about me practicing my hand eye coordination with the Velcro balls I use in the gym ‘dart board’? I’m eyeing Joan’s mouth as the goal.

We all laugh and we are being horribly cruel to joke at Joan’s expense. Her condition is not her fault.
If she is diagnosed with dementia she’s not alone.

Our gallows humour is our way of coping faced with the prospect of a similar fate in future.
That intangible thing life has designed we can’t pre-determine to preserve our reason for being and our sanity.

Rates of dementia in the UK are skyrocketing as elsewhere in the world. The projected figures of dementia sufferers in the next decade are horrifying.

And it’s more than obvious more money needs to be pumped into the creaking health system now to cope with the care needs of today.

Let alone tomorrow.

 Chapter 23: Defying gravity

You may know the Space Shuttle burned almost two million litres of liquid hydrogen and oxygen to escape the gravitational pull of the earth.

Creating over five million Newtons’ of force.

I don’t actually understand this, and I was rubbish at physics in school but the numbers alone suggest a bucket load of pushing power that anyone might need to pee uphill.

Essentially though one big controlled explosion.

This afternoon I was lying on my back with a She Wee shoved between my legs in a serious discussion with my physio practitioners Veronica and Jessie as to whether this was even a possibility.

As I looked down towards my groin all I could see was the plastic extension tube from my She Wee pointing skyward. Much like an erect thin pink penis.

You can have a purple one if you prefer, or Nato Green and even Desert Sand, though for some reason I’m reminded of Norman Schwarzkopf and Gulf War One, not exactly conducive for taking a leak.

We’re trying to find ways I can safely pee at night at home without getting out of bed while I’m still recovering from the MS attack which has stopped me weight bearing on my legs and transferring from bed to chair and onto toilet.

(Two weeks of enforced bed rest hasn’t helped me either, thank you NHS)

I’m laughing so much at even the prospect of trying I might even piss myself. Which of course would prove the point either way I suppose.

Music festival goers, campers and general outdoorsy ladies will already be familiar with this bit of kit.
I’ve used it on safari in Kenya too.

Obviously meant to be used standing up, the idea is that in my current reality I’d roll onto my side and place the She Wee between my legs and point the extension tube aka the pink penis into a bag containing little moisture absorbing capsules that turn liquid into solid jelly.

No leaks, no liquid, no wet sheets. No risk of infection or bed sores.

The aim: to stay dry till morning when the carers come again.

The care system dictates carers can only come up to 4x a day morning, lunchtime, afternoon, evening and not overnight.

So what to do when you pee at night and not much during the day like I do? Necessity being the mother of all invention…

I tried on my side. I tried on my back. I just tried.

But on earth pee can only go one way.

Real world testing shows Newton’s laws can be broken if you are piloting the Space Shuttle into outer space.

And I personally am not about to stick a rocket up my ass to prove him wrong.

She Wee test experiment 0 Newton’s laws of gravity 1
😂