Let's write an ME song!

I wake up in the morning

and I don't go to work

but I get a gold star

if I make it to the loo

My bed's my best friend

the pain will never end

but I keep fighting it

cause I'm not giving in

I go to bed at night

but it turns into a fight

i want to go to sleep 

but I just can't get a peep

Our 'song' seems to be turning into a rap!

good idea georgia

I wake up in the morning

but I can't go to work

will I get a gold star

if I make it to the loo

My bed is my best friend

the pain will never end

but I keep on fighing it

cause I'm never giving in

I go to bed at night

but it turns into a fight

I want to go to sleep

but I just can't get a peep

I might be being insane because it's the middle of the night and worry's keeping me awake (family stuff), but I wonder if there's a band who'd rally to our cause and put our song out there; proceeds to ME research?

We need publicity and to shout about this; we've been ignored for far too long. What do you think?

ME may sound pretty, but we can assure you it ain't

A life without pain would be so quaint

Waking every morning wondering what today will bring

Just another day of dealing with this thing

When will it stop, nobody will ever know

Looking to the future just fills me with woe

All the time dealing with fear and anxiety

I long for the day I think with sobriety

How long will I have to go through this disease

That keeps on bringing me to my knees

I live in hope that one day this will pass

Just like it does with my IBS gas

My little addition to the song, although mine sounds more like a nursery rhyme!

That's amazing Paul, thank you. I so relate, especially to the 'when will it stop...' and 'Looking to the future...' lines. I think we must have the stamina of gladiators to cope with it! 

I wake up in the morning

but there's not much I can do

I should get a gold medal

for making it to the loo

My bed is my best friend

the pain will never end

I go to bed at night

but it turns into a fight

I want to go to sleep

but I just can't get a peep

ME may sound pretty, but we can assure you it ain't

A life without pain would be so quaint

Waking every morning wondering what today will bring

Just another day of dealing with this thing

When will it stop, nobody will ever know

Looking to the future just fills me with woe

All the time dealing with fear and anxiety

I long for the day I think with sobriety

How long will I have to go through this disease

That keeps on bringing me to my knees

I live in hope that one day this will pass

Just like it does with my IBS gas

All the things I wanted to do all the places I wanted to see

I try to think positively and hold on to hope

But as the months turn to years it becomes harder to cope

Feeling so lonely laying awake at night

Becoming defiant and refusing to give up this fight

Hoping one day this thing may go as fast as it came

And I can then live my life once again x

Beautifully said Elaine! Thank you for sharing with us. You're right we need to hold onto hope. 

And we all have each other on here for times when it feels as though nobody else understands.

(( hugs)) x

The headfog will it ever go away

The having to pace and rest everyday.

The missunderstanding of friends 

and family this will never end.(s)

It is hard to keep going and be positive

If only I hadn't suffered for 33 years,if if

Sorry not very good, but I feel so strongly that I had to write something

I think it's excellent Alision because you describe it so well for all of us! 33 years! I thought 10 years was bad enough. You must be one strong lady! Big respect. 

I've stopped putting the verses together because it's getting pretty long! But keep them coming everybody; they're amazing. 

I could do some editing eventually, choose some of the lines for a chorus and we could have a really great ME song!

Does anyone know how to go about getting the song out there, finding a band, proceeds for ME research?