Thursday, 8 May 2014

ME Awareness Month poem 2014

My first ever YouTube video is now available online:
It is my ME/CFS Awareness poem, a copy of which is below.

I'm far from a talented poet, I just got bored, so it seemed like a good idea in a moment of madness... Please do check out the info/links below it though! Anyway, here it is:

ME Awareness Month Poem

It's ME awareness month
but I don't know what to say.
My feeling and emotions
I want to keep at bay.
How can I raise money
or help people understand?
I sit here cursing my failing body,
typing with a painful hand.
My illness, you see,
has failed to give me a break
To think clearly
and plan the difference I could make.
That's the problem
with this cruel nasty illness,
It rids you of
your predictable-ness*.
But others have done
much better than me;
Some plan to make jam
others parties with tea,
Some will wear pyjamas
or turn themselves or buildings blue,
Many have written
a blog post or two,
Some are dressing
as princesses for the day.
Awareness and fundraising
In many a way!
I'm so thankful others
have spared their precious energy
To raise money and awareness
for people like me.
So what is my story?
Why does it matter to me?
I'll tell you a little,
and then maybe you'll see..
I'm stuck at the moment
out of education or work
And it's certainly not
because I want to shirk.
I'm desperate to return to uni
to complete the degree I deserve.
Suggestions that I'm lazy
really do hit a nerve!
Days spent in bed
achieving nothing at all
Make me feel useless,
make me feel small.
But what choice do I have
when doing anything more
Makes me unwell,
makes me unbelievably sore?
I never thought I'd get this ill,
that I'd struggle to walk.
My eyes sometimes well up
just at the thought.
What can I do
when answers are few and far between?
A proven cure
is yet to be seen.
We wait for research
to provide the solutions we crave.
But until then we suffer
we have to be brave!
There are so many stories
just like mine.
The strange thing is
we often look fine!
You could walk past someone
ill with CFS
And you really would
never even guess
That they're ill with a condition,
complex and misunderstood.
We hope by raising awareness,
it will do some good.
So please if you can,
donate money to our cause,
And to all those doing all you can
A round of applause!

(*I know that's not a word but predictability didn't rhyme.. Forgive me?!)

Fundraising/awareness-raising efforts mentioned:

Jamming in jim jams

Tea party online and off

The big sleep for ME

Light up buildings blue

Turn yourself blue

Blog posts
Many are taking part in Louise Bibby's #ThisIsME blog chain

The princesses and ME

If any of the links don't work, please let me know!


  1. I loved your poem and thought it was great that you made it into a YouTube video also, I've never seen any other health/illness blogger do that before and I'm sure people will love it as much as I did! Great job spoonie sis!

    Meg |

  2. Your poem is so lovely! It's nice to hear what your voice sounds like too, is that weird? Awareness week is going to be great, it's so nice to see everyone coming together and doing what they can even though we all feel terrible. We are just so passionate about raising awareness and finding a cure. Take care lovely lady! xx Hayley-Eszti

  3. Awh that's such a lovely poem, Jess! And brilliant that you've made it into a video - I thought it was nice to hear your voice, too! I think 'predictable-ness' is totally justified - poetic licence ;) It's so brilliant to see everyone's contributions to Awareness Week. I hope it gets as much publicity as possible and shows just how worthy this cause is and how much we need research so that we can get some proper treatment! :)

    Katharine xx