Victorins withME/CFS Your Say-CFS Poem

CFS POEM

by Peter Owen

Gee you look well

I was walking down the street and bumped into someone I know who said hello

“Gee you’re looking well” she said “you have such a lovely glow”

Boy had she really missed the mark as I moped along without an inner song. I simply felt like crap.

All I really wanted to do was run (if I could) go and hide back to bed and nap.

You see I have ME/CFS and Fibromyalgia, a complicated confusing name (and an actual thing)

So complicated and confusing that even my doctor doesn’t ring

I wake up in the morning, feeling like I’ve not even slept

It’s as if I had been to a funeral all night and all I had done was wept

I’m only 47, supposed to be in the peak and prime of life

I have two beautiful little children and a gorgeous wife

but after a broken leg and with some time and rest in bed

I thought I would be better, but I’m sicker now instead

No one understands this rotten thing, called Fibromyalgia and ME/CFS.

The letters are short for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, see I told you I’m a mess

On the outside all looks well, but you ache, you’re tired, no I mean, you’re really, really tired.

So body and brain exhausted, it’s hard to move at times, all you think the best to do, is simply suicide.

The depression comes from nowhere, it hits you like a brick

It really knocks the life from you and you keep thinking you must be sick

“this is not a rational thought” you say as it has comes from out of thin air

But the junk that floats in your head makes you think, this isn’t fair

You try and ignore these dreaded thoughts of course, as you can still do some things

But your life is not the same, because the condition has clipped your wings

You often forget simple stuff, as others easily remember,

as the brain doesn’t function as well like is it April, June or November?

I mentioned the other day, that I had CFS to a guy that I once knew

He asked for some help of me, but I apologised and said I can’t help you

I explained that if I do too much it will send me for days to bed.

He didn’t say sorry to hear it, instead it was, “you’ll get over it, perhaps it’s all in your head”

Most friends will look at you strangely, when you try and explain what you’ve got

And because you still look the same, they don’t understand this condition “with the lot”

When you do, it’s just you’re having a whinge and often they will leave and say, “you’re no longer fun”

“You just need to change your attitude, and then you will again, be number one”

How wrong they are and how frustrated and angry you can get

They haven’t understood how terrible this has felt

Some say it is better to have cancer or some other known disease

But you wouldn’t wish this thing, not even on your worst enemy, well, with any ease

If it was a condition people all knew, there would be understanding, or even some kind help

With doctors, psychiatrists and so called specialists all running in circles and giving a little yelp

“There is no cure” saying we think it’s this and no it’s that, that might cause all of this

And in the mean time we sit and wait and wait but give up and give the doctors a great big miss

It used to be called the yuppie disease and it was just an excuse not to work

But how can you explain the years of hell we choose, just for a little work shirk

I’d rather the life I had before, instead of having to plan all the time

About how I can manage simple tasks, like washing and putting the clothes on the line

To explain to you well “what’s it like”, is going to take some time

So I will get you to imagine and open and free your mind

Think if you can, back to the time when you had the worst dose of flu, with your body aching from head to toe

It’s as if you’ve been run over, not only by a great big truck or bus, but then a rotary hoe

There is no bruising, so no sympathy comes your way, but you feel you’ve run a 100 kilometres a day

Your out of puff and then there’s the sensitivity stuff, from hormones gone astray to the chemical malaise

This is when, at a thousand paces, you smell a woman’s sweet perfume

and instead of saying “that’s really nice” it makes your head spin and really swoon

The massive headaches then begin, you want to be sick and you feel quite faint

You want to simply run away and get some air, just to breathe and ventilate

It is not just tired because there are over 20 symptoms that comes with this awful condition

and those that have it, have been through them all, even the lack of nutrition

Theres more symptoms as well and I think I’ll tell, just to make you feel quite ill

There’s deep aching fatigue and lots of pain, depression and anxiety, which some are lucky to get a pill

Not much sleep (even if you count the sheep) and “brain fog”, which is confusion with your thinking

Then sore throats, allergies, rashes and your ears often ring, and lots of nasty things, including gas and stinking

My 97 year old grandma, feels younger than I, with my joints, muscles and bones all aching

But “your test is normal” says the doc, looking at you sideways, but you know they’re damn mistaken

There is something definitely amiss and wrong, because why do I feel so lousy

And why is there not a simple test to prove that I’m simply not mad or crazy

A lot of normal people think, you are a little woo hoo, even some doctors too

But those that have got this, definitely know this, that it isn’t at all true

You see, after living with this for many years, (and some for even life)

We know we are not crazy, because we weren’t before this blight

It is the condition that makes you angry and not the other way around

You can’t think straight with all the aches and pain that abounds

The chemicals in your brain’s gone wild and in your guts and other bits as well

Sometimes it’s as if you are living a nightmare, with Satan and you’re both in hell

Some are so bad with this awful thing, they’ve yet to get out of bed

Others are pretty lucky like me, as it comes and goes instead

Your not sure when and not sure why and it affects a lot of people, from little kids to grandmas too

In fact it is highly recognised, as a dangerous condition, according to the W.H.O

When I was well, I ran a business and flew around the world

Giving seminars, and having the time of my life, it was such a whirl

I was full of boundless energy, with lots of confidence, to face any given task

But now a simple walk to the shops, is sometimes too much to ask

I used to be the breadwinner, coming home to a lovely dinner, but now my wife has to take my place

As I can’t work or even help, she’s forced to take on the work and all the rest, all at such a pace

The guilt I feel, as I have felt, that I let my family down, the dreams we had and the fun times ahead,

makes us all mad and sad and appear to have all but be nearly dead.

They say you take things for granted, especially your health, but when that’s gone

as quick as a one hit song, you wish you had it back and things were not so wrong

It’s the simple things you miss, like standing with your friends, or walking with your wife

But it’s hard to stand or walk for long as you have to rest a lot, others see the simple things as a normal life

Before I got this condition I could kick the footy and throw my kids high into the air

Now there are days I am lucky, to have the strength to comb their hair

You can’t tell that from looking at me, as I still seem quite a normal guy

But please have some understanding and I won’t get so angry or go quite so shy

It’s not only hard on you, you see, it is hard on the whole family, as it affects us all both old and small,

Friends and relatives and those you’ve known, it can become really full blown (it’s better to head butt a wall).

With all the fights and regrets, it sends you mad and you’re not glad, you walk around with a frown

But by having strength to stick together, you can go on and on and not let it get you so down

ME/CFS and Fibromyalgia is very confusing, for everyone around

But if we can come together, we can break new ground

So please if someone has this condition, don’t go and wander away

Be their friend, simply hold their hand, offer some help and stay.

* Posted with permission

	Victorians with ME/CFS, FMS and MCS
	HOME NEWS MEMBERS AWARENESS YOUR SAY MEDICAL LINKS INDEX CONTACT
	CFS POEM by Peter Owen Gee you look well I was walking down the street and bumped into someone I know who said hello “Gee you’re looking well” she said “you have such a lovely glow” Boy had she really missed the mark as I moped along without an inner song. I simply felt like crap. All I really wanted to do was run (if I could) go and hide back to bed and nap. You see I have ME/CFS and Fibromyalgia, a complicated confusing name (and an actual thing) So complicated and confusing that even my doctor doesn’t ring I wake up in the morning, feeling like I’ve not even slept It’s as if I had been to a funeral all night and all I had done was wept I’m only 47, supposed to be in the peak and prime of life I have two beautiful little children and a gorgeous wife but after a broken leg and with some time and rest in bed I thought I would be better, but I’m sicker now instead No one understands this rotten thing, called Fibromyalgia and ME/CFS. The letters are short for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, see I told you I’m a mess On the outside all looks well, but you ache, you’re tired, no I mean, you’re really, really tired. So body and brain exhausted, it’s hard to move at times, all you think the best to do, is simply suicide. The depression comes from nowhere, it hits you like a brick It really knocks the life from you and you keep thinking you must be sick “this is not a rational thought” you say as it has comes from out of thin air But the junk that floats in your head makes you think, this isn’t fair You try and ignore these dreaded thoughts of course, as you can still do some things But your life is not the same, because the condition has clipped your wings You often forget simple stuff, as others easily remember, as the brain doesn’t function as well like is it April, June or November? I mentioned the other day, that I had CFS to a guy that I once knew He asked for some help of me, but I apologised and said I can’t help you I explained that if I do too much it will send me for days to bed. He didn’t say sorry to hear it, instead it was, “you’ll get over it, perhaps it’s all in your head” Most friends will look at you strangely, when you try and explain what you’ve got And because you still look the same, they don’t understand this condition “with the lot” When you do, it’s just you’re having a whinge and often they will leave and say, “you’re no longer fun” “You just need to change your attitude, and then you will again, be number one” How wrong they are and how frustrated and angry you can get They haven’t understood how terrible this has felt Some say it is better to have cancer or some other known disease But you wouldn’t wish this thing, not even on your worst enemy, well, with any ease If it was a condition people all knew, there would be understanding, or even some kind help With doctors, psychiatrists and so called specialists all running in circles and giving a little yelp “There is no cure” saying we think it’s this and no it’s that, that might cause all of this And in the mean time we sit and wait and wait but give up and give the doctors a great big miss It used to be called the yuppie disease and it was just an excuse not to work But how can you explain the years of hell we choose, just for a little work shirk I’d rather the life I had before, instead of having to plan all the time About how I can manage simple tasks, like washing and putting the clothes on the line To explain to you well “what’s it like”, is going to take some time So I will get you to imagine and open and free your mind Think if you can, back to the time when you had the worst dose of flu, with your body aching from head to toe It’s as if you’ve been run over, not only by a great big truck or bus, but then a rotary hoe There is no bruising, so no sympathy comes your way, but you feel you’ve run a 100 kilometres a day Your out of puff and then there’s the sensitivity stuff, from hormones gone astray to the chemical malaise This is when, at a thousand paces, you smell a woman’s sweet perfume and instead of saying “that’s really nice” it makes your head spin and really swoon The massive headaches then begin, you want to be sick and you feel quite faint You want to simply run away and get some air, just to breathe and ventilate It is not just tired because there are over 20 symptoms that comes with this awful condition and those that have it, have been through them all, even the lack of nutrition Theres more symptoms as well and I think I’ll tell, just to make you feel quite ill There’s deep aching fatigue and lots of pain, depression and anxiety, which some are lucky to get a pill Not much sleep (even if you count the sheep) and “brain fog”, which is confusion with your thinking Then sore throats, allergies, rashes and your ears often ring, and lots of nasty things, including gas and stinking My 97 year old grandma, feels younger than I, with my joints, muscles and bones all aching But “your test is normal” says the doc, looking at you sideways, but you know they’re damn mistaken There is something definitely amiss and wrong, because why do I feel so lousy And why is there not a simple test to prove that I’m simply not mad or crazy A lot of normal people think, you are a little woo hoo, even some doctors too But those that have got this, definitely know this, that it isn’t at all true You see, after living with this for many years, (and some for even life) We know we are not crazy, because we weren’t before this blight It is the condition that makes you angry and not the other way around You can’t think straight with all the aches and pain that abounds The chemicals in your brain’s gone wild and in your guts and other bits as well Sometimes it’s as if you are living a nightmare, with Satan and you’re both in hell Some are so bad with this awful thing, they’ve yet to get out of bed Others are pretty lucky like me, as it comes and goes instead Your not sure when and not sure why and it affects a lot of people, from little kids to grandmas too In fact it is highly recognised, as a dangerous condition, according to the W.H.O When I was well, I ran a business and flew around the world Giving seminars, and having the time of my life, it was such a whirl I was full of boundless energy, with lots of confidence, to face any given task But now a simple walk to the shops, is sometimes too much to ask I used to be the breadwinner, coming home to a lovely dinner, but now my wife has to take my place As I can’t work or even help, she’s forced to take on the work and all the rest, all at such a pace The guilt I feel, as I have felt, that I let my family down, the dreams we had and the fun times ahead, makes us all mad and sad and appear to have all but be nearly dead. They say you take things for granted, especially your health, but when that’s gone as quick as a one hit song, you wish you had it back and things were not so wrong It’s the simple things you miss, like standing with your friends, or walking with your wife But it’s hard to stand or walk for long as you have to rest a lot, others see the simple things as a normal life Before I got this condition I could kick the footy and throw my kids high into the air Now there are days I am lucky, to have the strength to comb their hair You can’t tell that from looking at me, as I still seem quite a normal guy But please have some understanding and I won’t get so angry or go quite so shy It’s not only hard on you, you see, it is hard on the whole family, as it affects us all both old and small, Friends and relatives and those you’ve known, it can become really full blown (it’s better to head butt a wall). With all the fights and regrets, it sends you mad and you’re not glad, you walk around with a frown But by having strength to stick together, you can go on and on and not let it get you so down ME/CFS and Fibromyalgia is very confusing, for everyone around But if we can come together, we can break new ground So please if someone has this condition, don’t go and wander away Be their friend, simply hold their hand, offer some help and stay. Copyright Peter Owen: a ME/CFS sufferer * Posted with permission
	HOME NEWS MEMBERS AWARENESS YOUR SAY MEDICAL LINKS INDEX CONTACT
	Page last updated by Judy (cfsnews@mac.com) July 6, 2007

Victorians with ME/CFS,

FMS and MCS

CFS POEM

Gee you look well