I don't know why I've got M.E. (NOT an ode to Simple Simon!)

I don't know why I've got M.E.

It can't be accidental.

Now Simon Wessely smiles his smile

And says it's mostly mental.

I used to do all sorts of things

Working, playing, thriving.

But these days I am just so sick

I'm only just surviving.

Those flu jabs and those viruses

They always made me ropey,

For weeks and months I used to feel

So iffy, crashed and dopey.

I drove myself to carry on,

So much still to achieve,

But some days I'm too weak to walk.

My sickness just won't leave.

It took an age to diagnose,

It took so long to name.

Now there's a brolly called CFS,

Which isn't quite the same!

They sent me off to talk it out

They called that CBT.

The exercise that made me flop

Was GET, you see.

On days when I can make some sense

Inside my foggy brain,

I try to raise awareness.

Simon says I'm not quite sane.

And every time I do things,

Simple stuff I used to manage

With minimum of effort,

Causes untold pain and damage.

My limbs are sometimes cold to touch,

Or burning like a fire,

Simon says it's in my head,

I'm just a workshy liar.

The words I used to work with

In my ministry and writing

Go AWOL as I try to think.

My energy? Gone like lightning.

My muscles twitch and tremble.

When I walk, the ground's like rubber.

Nausea's now a way of life,

Yet I'm some benefit bludger?

The floor that once seemed smooth and flat

Is now like mountaineering.

A blowtorch must have scorched my eyes,

Strange ringing dogs my hearing.

I'm bruised from walking into things

I'm crushed from all I've lost.

They're sure it's biomedical

Yet Simon won't be crossed!

He has his little theories

He cooked up years ago,

But science is making progress,

What the heck does Simon know?

The papers give him headlines,

The journos lick his boots.

Is it our paranoia

To suggest they're in cahoots?

The powerful health insurers,

Drug companies, MPs,

And NICE which isn't nice at all,

Who lives in a myth like these?

Often M.E. gets my body down,

But I won't lie down in spirit;

Some day biomarkers will mark our cure.

That's worth the wait, now, innit? 

Till then, we've got each other, guys,

To help keep a positive smile on.

One day our brains will be free of fog,

And the likes of Simple Simon!

Simple Simon Says: Sing-a-long-a-Graded ExerciseTherapy?

Hope this might bring a smile to your day.


It popped into my head as I wrote the previous blog post and thought about the untold damage a certain Simple Simon is doing to all the M.E. community with his media shenanigans.


This little song was all the rage when I was a kid and got to number #4 in the UK charts back in 1968.


Perhaps the original inspiration for the Wessely School version of GET for M.E.?

LYRICS: I'd like to play a game that is so much fun
And it's not so very hard to do
The name of the game is Simple Simon says
And I would like for you to play it too

Put your hands in the air
(Simple Simon says)
Shake them all about
(Simple Simon says)
Do it when Simon says
(Simple Simon says)
And you will never be out

Simple Simon says put your hands on your head
Let your back bone slip Simon says
Put your hands on your head
(Simple Simon says)
Bring them down by your side
(Simple Simon says)
Shake them to your left
(Simple Simon Says)
Now shake them to your right

Put your hands on your head
(Simple Simon says)
Bring them down by your side
(Simple Simon says)
Shake them to your left
(Simple Simon says)
Now shake them to your right

Now that you have learnt
To play this game with me
You can see it's not so hard to do
Let's try it once again
This time more carefully
And I hope the winner will be you

Clap your hands in the air
(Simple Simon says)
Do it double time
(Simple Simon says)
Slow it down like before
(Simple Simon says)
Ah, your looking fine
(Simple Simon says)
Now clap them high in the air
(Simple Simon says)
Do it double time
(Simple Simon says)
Slow it down like before
(Simple Simon says)
Ah, your looking fine

Don't try this at home!
Doing it in double time may, in fact, damage your health!
Hope this may help to keep you smiling through your bad days!
You're not alone!

Feeling As Rough As Hetty Pegler's Tump!

 Feeling as rough as Hetty Pegler's Tump, today.

This is when lying flat, birdwatching through the bottom of the conservatory doors, comes into its own as a useful low-energy and non-challenging hobby (plus favourite music for when eyes need closing, of course!)

Funny what things come into your head when you don't need them. Into my bottomless well of trivia, at any rate! 

Funny what vitally necessary words escape you, too, when brain-fog descends. Or what incorrect substitute words come in to masquerade as logical and make your conversation into semi-gibberish. Not that people usually notice, in my case! They're used to my less-than-linear modes of expression, even at the best of times! 

I've always fancied visiting Hetty Pegler's Tump, just on the basis of that fantastic name. First came across it in a book about UK places of historical interest when I was a child.

Why it flashed into my head as a nonsensical metaphor for the way I was feeling today, as a result of the painful, draining effects of M.E., I have no idea! But it got me giggling, and a few friends with me, when I said it!

It's actually a Neolithic long barrow in the beautiful countryside of the Cotswolds in Central England if you haven't come across it! Why would you have, unless you share my obsession for the bizarre or for English history?

Sad to confess, I haven't actually been there in person yet! Shame! English Heritage's loss and mine!

But it made me smile, just recalling the name, on a day when I haven't any spare energy for doing much more than slump and weave those pinwheels and rainbows of sense and serendipity together. See my other blog at Jobiska's Pinwheel with its unfocused smorgasbord of bits and pieces from my imagination and varied interests if you care to! If you fancy a wander and you've got the appetite for a meander through my obsessions and other facets of my life!)

Just for the record, I've no evidence that Hetty Pegler's Tump is actually rough, at all. Any more than Neolithic stone long barrows usually are! I'll leave it to your imagination as I go off for a bit of a rest!

Hope at least the name made you smile today too, whether you're feeling rough or not!

 

View of Hetty Pegler's Tump near Uley in rural  Gloucestershire, UK

 

 

 

 

Stormy skies over Hetty Pegler's Tump

Inside the longbarrow: feeling rough or maybe claustrophobic? Not for long, I hope!

 

What's in a Name?

Some days my brain is mush.
Sometimes that's thanks to being crashed from M.E.
Other days, my brain is just mush.
No excuses!

Like today.
I discovered that the plastic surface of the buttons on the door of my 5 year old microwave was getting very blistered and bubbly. When I investigated more closely, the penny finally dropped. After only five years! It's just one of those transparent plastic protectors manufacturers put over screens, meant to be peeled off immediately! Here I was, 5 years later, with the thing still in place.

Now although I bought the micro at around the same time as I was floored by my latest major bout of M.E. five years ago, I can't blame that "Duhhh!" moment on M.E. brain fog.

I can't blame comical moments like that on anything else but my slightly scatty, away with the fairies personality. I've never been that quick to grasp the plot, even with various letters after my name!


But I'm struggling now with a new "development" in the science behind M.E.  Or rather the language used to provide more baffling acronyms. It's enough to induce "brain fog" in the fittest!

Circa 2008, a study claimed a link between M.E., prostate cancer and related illness, and XMRV (Xenotrophic Murine virus-Related Virus). Yes - virus-related virus. There's a good start towards clarity, eh?


Now, in March 2011, I see on various blogs, M.E. chat groups and elsewhere on the web, XMRV is going to have a name change, to HGRV (Human Gamma Retrovirus). For resultant conditions like M.E. with possible viral links, the snappy new acronym will be HGRAD (Human Gamma Retrovirus Associated Disease). One reason seems to be "Murine" refers to mice, so the new name focusses back on the humans affected, not visions of Mickey Mouse and Ratatouille!


Should we break out the champagne? (I might, if only M.E. had not also made me allergic to alcohol!).  Wait! I've only recently got one friend's eyes to light up with understanding that my Type 1 diabetes and my M.E. may well both be understood one day to be autoimmune diseases, quite distinct from Type 2 diabetes and a spot of vague "T.A.T.T." (Tired All The Time).

Now we have yet more letters to juggle with! While for the general public and for many G.P.s,  understanding and acceptance of the crippling, frustrating disease and the umbrella of illnesses that may or may not be related, is still a lottery dependent on personal encounters with genuine sufferers or the cynical lies propagated by the media and talking heads.


While the war of words goes on between the labels M.E. (Myalgic Encephalomyelitis, or as some insist, Myalgic Encephalopathy), C.F.S. (the much vaguer Chronic Fatigue Syndrome, which IMHO fails completely to describe 3/4 of the disabling symptoms and coddles folk into the notion that a bit of backbone would cure those contemptible malingerers!) and P.V.F.S (Post Viral Fatigue Syndrome, which unlike M.E. seems to harbour hope of a quick return to full functioning), we now find more riddling initials to addle our foggy brains!


I have so many friends at the moment struggling with a wide variety of illnesses which, like me, they simply refuse to be defined by or beaten by.


The labels, the letters may come and go. But we're here, guys, and we're not going to be filed away under T.B.A.

Keep smiling and trusting that you are certainly not alone.