29. Wham - a rewrite of a previous post

In my very first blogpost (Pancakes) I mentioned that pre-ME I loved canoeing and even took part in a canoe-polo league. The ladies league combined with the youth league which unfortunately resulted in slightly built ladies like me facing teenage boys built like hulks ...

The only rule I remember of canoe-polo is ... when you are holding the ball, someone in the other team can push you into the water. The more skilled player can make a nifty twist of the oars and flip the canoe upright again without dropping the ball. I did try, and a very patient teacher allowed me to try repeatedly, but I never mastered it. So, I tended to skulk in defence and avoid holding the ball as much as I could because every time I took possession of the ball, a hulk from the opposing team would appear and push me in, before going on to score a goal.

You might ask, 'Why did I do it?' I have to say quickly that my river canoeing was more adept than my polo skills and I canoed for a couple of years before capsizing into a river. I'm sure, because I'm not a strong swimmer, it was sheer will-power rather than any particular skill that kept me in the canoe. The rapids at Grandtully were a favourite and challenging end to a day on the Tay. I took part in the polo because the team needed a fifth player and was often one down; they assured me that the team was better off with me as the fifth member than playing with only four, tho' I was never convinced.

My experience of ME is like catching the ball in canoe polo; here comes the ball ... you catch it ... and for a moment you think, Hey, here I go... full steam ahead ... target in sight ... I'm on a roll ... then ... wham ... one push... and down into the water you go. The Wham is ME and like ME it's unpredictable.

Unpredictable is the word that a rather scary Occupational Health doctor used to describe me when I ventured to ask if I had any rights as a disab...... 'Rights! Your employer has the right not to have someone as unpredictable as you working for them!'

The all-elusive flip is my belief that a cure will be found; a cure that will stop ME from knocking me down at every turn. I can't stop believing that the scientists worldwide working towards a biomedical cure will be successful ... and maybe one day I can get back into a canoe.

28. My poem for ME Awareness Day

***Press here to view ...
ME Awareness Day poem on You Tube

ME since I was 24

Me since I was 24

When I was 24 ME was 'yuppie flu'

Belittled and mocked by the press

That's the reason no-one knew

and 'til i was 54 I couldn't confess

That I've had ME for thirty years

And only the risk of being fired

Led me to face my fears 

And admit - out loud - I was more than 'tired'

Avoiding diagnosis for many years because

Who?

Who would want the label Yuppie Flu?

To be given by doctors who've been taught

 "its all in their heads, they think they're ill; they're not"

At 24 Epstein Barr Virus known as glandular fever

Left me weak and sore for months, for years

Recurrent infections of chest and throat and ears

And pain in joints and muscles

So extreme 

at times it made me scream

A weak and sorry sound 

As i crawled along the ground

To bathe and feed myself

Longing for my health 

to return, my work and my social life to resume.

Seen by doctors who were taught 

"It's all in their heads, they think they're ill; they're not"

Then there's the comedians who think ME's fair game

Because compared to cancer 

"It's really not the same" ... So ..

...let's all laugh at Sue who has ME - It's really quite a joke

that 'fired' rhymes with 'tired' so we'll take an easy poke

At Sue who's kids are growing up with mum who's been 'retired'

A part-time mum, in bed a lot because she's merely tired

....so let's see if we can raise a laugh at Sue who has ME

It's really quite hilarious that people cannot see

The millions missing from society, from schools and from work places

Because ME is stealing life from them and hiding all their faces.

ME really isn't comedy

The missing millions worldwide are more than ready

To use what health and energy we can 

 to ask the governments to plan

research funds, for a medical breakthrough

That will cure this devastating disease and to ask you ...

Until a cure's found for ME

Please show us you can see

The millions missing from society, from schools and from work places

Because ME is stealing life from them and hiding all their faces.

 

27. Difficult to Swallow

A health question to The ME Association's most recent ME Essentials magazine caught my interest for two reasons; the first, the question was about swallowing difficulties, which I have experienced myself and secondly because I am a speech and language therapist (SLT) with a post grad training in Dysphagia (swallowing difficulties).

Swallowing difficulties are terrifying. Everyone chokes from time to time on notorious foods such as grapes, dry crumbly scones, rice crispies so most people will remember how alarming it is to  try to cough a bit of food out of the back of your throat in order to regain the ability to breath. And how embarrassing it is if you take a bite of scone or cake in a busy cafe and end up gasping, coughing, spluttering not actually sure if your breath is going to return.  You feel that you're trying not to choke to death while equally fearing soul-destroying embarrassment, and in some ways when composure returns, the fact you have your dignity intact means more to you than your breath returning!

I've made my own assessment of my swallowing difficulties and try to avoid offending items of food: taking a bite of a dry scone then breathing in ready to speak or laugh is a danger zone; eating food that has two different textures, especially salad with a liquid salad dressing often results in me chewing the salad items while unnoticed the acidic salad dressing slips down to the back of my throat; I can sometimes feel icy cold drinks at the back of my mouth going up into my nose and down towards my lungs instead of my stomach.

In addition to choking episodes, I had over a year of non food related coughing that occasionally took my breath away and left me unable to breath in. A diagnosis of Asthma and a prescription of inhalers helped this instantly but even with the inhalers it is creeping back again and will be reviewed.

In my work as a SLT I often assessed clients who choked on food or drinks and advised about types of food that were best to eat and which to avoid. If assessment face-to-face was difficult and it wasn't completely clear what was physically happening inside someone's mouth and throat I could make a referral to the local hospital for a Video Fluoroscopy (VF) appointment which involved having a video xray taken while the client was swallowing food and drink with what nowadays is done using the most modern computerised technology.

Having your swallow assessed is a wise thing to do if you have choked repeatedly on food or drink, especially as the lady who wrote the the ME Assoc said that she'd needed the Heimlich Manoeuvre three times. There is the risk of choking but also the irritation to the lungs of food or liquid finding their way in.

I've written to the ME Association saying that the lady who wrote the question for ME Essentials should ask her GP for a referral to SLT.

I will return to this topic again.




I'd be interested to hear other ME sufferers' experiences of choking either in a comment below or a tweet on Twitter and I will follow up by discussing ME and Dysphagia with SLT colleagues in the VF dept.

26. Taking a poke at ME ... ... and if you don't agree with what's written, take a poke at me!

Now if Steve Carell had sung, Please Don't Make Fun of the Disableds as Michael Scott in the context of an episode of The Office (USA), I have to admit I might have found it funny. I might even be touched ... not sure what word might describe my feelings... amused ... yes, mildly amused that my dis-abling illness was poked at in a way that clearly was being sung by a clueless comedy character, a caricature of someone with questionable social graces and a lack of understanding of acceptable social boundaries. His use of the term 'Disableds' would then have been better placed ... within the strict confines of The Office, from the voice of a character who tries to say the PC thing but always gets it wrong. The audience would laugh at him for being inept in his use of words.

Its all in the context. I don't see Ricky Gervais as David Brent (who became Micael Scott in the American version.) He's not built up the character enough for me as Steve Carell has done in the context of the long running - very long running - USA sitcom (one of my teenagers has the box set!) Ricky Gervais is still Ricky Gervais when he's singing so it comes across perhaps as more clever-clever-cruel than I think he intends. And even more so when the song is available commercially in a collection of similar songs, so that people might ... sing along at a party?

I do see what he was intending, choosing the predictably unacceptable things to say about people with disabling conditions and letting David Brent say them grotesquely outloud cos that what his character does. Trouble is, most people do get that it's unacceptable to make fun of those who are disabled by a health condition or illness. I hope so anyway. But people don't get what's wrong with saying to ME sufferers,  'Oh you have ME. Well, I'm tired too. Everyone's tired'. People with ME hear it all the time. Not maybe as directly as that but people do tell me very very very often how tired they are ... non verbally, by actions, facial expression, text and email, verbally, face to face, behind my back but within earshot. That and many other pokes chip away at ME's credibility as a real illness. 

It's easier to have a poke at the illness than to take time to find out that it's a very serious, life destroying illness that most in society don't understand unless they're touched by it. Mention MS, Dementia, Cancer and people get the life changing enormity of these - and don't, I think, write 'funny' songs about them.  ME isn't like other illnesses that dis-able; it's a stigmatised illness that people think they can take a poke at. I'm afraid the Disableds Song gives the message that it's okay to tell people with ME that they're merely tired. It's what people already say. 

In context it's David Brent's awkward, clumsy verbal and social ineptitude; out of context it is Ricky Gervais being cruel which I don't believe he is. I read the lyrics of the song and referred to him in a tweet as the Katie Hopkins of comedy. I don't think he is. It's all in the context. Sorry, Ricky, if I've got this wrong and if cruel is what you were trying for!

25. A reply to Ricky Gervias' Disableds Song

Very loosely to the tune of Mine Eyes Have Seen the Glory ... very loosely! or better still ... don't sing!

CHORUS:

  Hello my name is Ricky 

  And I'm really quite a wit

  Rhyming's very easy

  And there's no reason to quit 

  When I'm well ahead in song-writing

  The words all seem to fit

  So really very well

  That I don't see I'm writing sh..!

'Fired' rhymes with 'tired'

So let's see! There's that ME

Where folk are a tad weary

That is really just like me

So I'll disregard it kills people and devastates lives too

And carry on with rhyming 

Because that's just what I do

  Hello my name is Ricky ...

Let's have a look and use a name and see if it's still fun

'Please don't make fun of the disableds' of which Sue is one

She sometimes cannot walk or talk, and so she's just been fired

After thiry years, a job she loved, but heyho why get wired?...

...let's all laugh at Sue, she has ME It's quite a joke

That 'fired' rhymes with 'tired' so we'll take an easy poke

At Sue who's kids are growing up with mum who's just been fired

A part-time mum, in bed a lot because she's merely tired

  Hello my name is Ricky ...

Here's a photo of the lady; let's laugh at Sue who has ME

It's really quite hilarious that people cannot see

The people missing from society, from schools and from work places

Because ME is stealing life from them and hiding all their faces.

24. I'm not a gardener ...

Once I planted a seed. The seed was tended by me and a small group of seed-nurturing-experts and we helped it to grow into a flower that blossomed in a small but very precious garden. From that flower, others grew and they multiplied in the garden and gave a beautiful scent and a bright array of colours. When the flowers spread out of the garden I could no longer be the gardener. ME stopped me from even tending the original flower. The gardener who took over has great skill and has tended the flowers well as they have spread far afield.

I'm not a gardener. I used an allegory here to describe my work and how I have lost it to ME, because I don't want to identify myself. I am frightened I won't get my ill-health pension. I use a false name on Twitter. I don't put a name on my blog. I don't trust the internet; someone from the pension agency will see my writing or my tweeting and connect that it's me and say, well if she can write ...

I am writing this lying flat in my bed, it hurts my wrists and my hands, tires my brain. That I can write helps to stop frustration creeping in; that I can use FB and Twitter keeps me connected when my world has shrunk to the inside of my house with occasional must-do outings. My family, my loving and lovable hubbie and my funny girls keep me going; the youngest one's amazing baking, the middle one's incredible dinners and the oldest one's hilarious messages from student life. And the on-line humour that shines through the hardship of so many people with ME keeps me buoyant, when I can't believe I've had to leave my garden and I might never return to it.

23. The parable of the seed: A Thank You to the ME Experts at the IAMECFS, Fort Lauderdale, 2016

Thirty years ago the Chief Gardener of the Royal House planted a seed. He told his apprentices that it would grow and spread throughout the land. He said it would become a thing of beauty. And so it came to pass; it grew ... like Japanese knotweed it flourished, taking over gardens, clinging to each and every beautiful flower it touched, strangling and silencing their beauty, dulling their scent. The wilting flowers were noticed and people said it was a pity and even criticised the Chief Gardener. But he told The Queen and Royal Courtiers in her Government and Army, the Lords and Ladies of the land to trust him, that he was right. Indeed they greatly admired his work and The Queen knighted her Chief Gardener. His plant continued to creep, spreading as if indestructible to realms afar, not least to the parks and gardens of New York where it was received as if it were the greatest ship ever built, arriving safely at its destination, greeted by crowds who adored Sir Chief Gardener.

A new Spring is on the horizon in these gardens. In many lands from East to West citizens are asking where the beautiful flowers have gone. Commoners are noticing that millions of these flowers are missing from their gardens. Expert gardeners from every corner of the earth are dedicating themselves to finding ways to cut back the knotweed at its roots, to nurture the missing flowers and return them to their gardens, to release their colours and beautiful scents.

A big THANK YOU to these inspirational gardeners.