Living With Me (M.E.)

 This poignant poem is was written by Kathy Thomas:

Living with Me (M.E)

Myalgic Encephalomyelitis is a mouthful you would agree,

So it’s no wonder those who have it prefer the name M.E.

My memory finds it hard enough since this illness came

To remember the little things in life such as my own name.

I wake up each morning feeling like it’s time for bed

Then late at night I’m wide awake, thoughts racing through my head.

It’s a topsy-turvy world living with M.E.

But I never give up hoping that one day I will be free.

I have tried all kinds of remedies, therapies and pills,

Of CBT and GET I’ve really had my fill.

As for Mindfulness well heaven only knows

How on earth you manage to breathe out through your toes.

I know they all mean well and far be it from me

To tell these experts they have no idea how to cure M.E.

I have tried meditation, I lie down and try to keep

My thoughts focused and aware, within ten minutes I’m asleep.

They thought it might be sleep apnoea causing my malaise

So I tried sleeping with a CPAP mask strapped to my poor face.

It felt a bit like torture but my determination did not waver,

My poor husband said it was like sleeping with Darth Vader!

Nothing has helped it’s sad to say but one day something will

Then I can claim my life back and say goodbye to feeling ill.

For now I go on living with the illness called M.E.

And my poor love he has to go on putting up with me.

Written by: Kathy Thomas