A Poem About Life With Severe Myalgic Encephalomyelitis

An empty bed in a dark room, title reads: Poem, Severe M.E. is... What it's like living with severe Myalgic Encephalomyelitis

​August 8 is Severe M.E. Awareness Day. A day to give a voice to the millions of people around the world who are living in isolation and torment due to the harsh effects of Myalgic Encephalomyelitis.

25% of people with M.E. are housebound or bedridden. The most severe living in darkness and silence for years... decades even. Neglected, misunderstood, vulnerable and severely disabled, yet they carry on fighting, waiting, hoping. Moment by moment. One day their breakthrough will come. One day they will be believed and helped. 

This day is for them, we speak for them, we shine a light into that darkness and show the world what Severe M.E. is really like. ​

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I ​submitted this poem for #MEAction's 2019 campaign for Severe ME Awareness Day. It is based on my own experience of Severe M.E. I have been housebound and mostly bedridden with a full time carer since 2015. I'm blessed to have help from my understanding family, but many others are not so lucky. Left to manage all alone in devastating conditions. 

You can help our cause by sharing our stories.

If you'd like to share ​my poem, here is a graphic you can download and share on social media. The full text is below.

In the background, Char lying on her bed looking exhausted. Her poem about ME is written over the top of the photo. See tect below image.

Share The Poem!

Severe ME is...

Days and nights alone in bed.

Curtains closed, house quiet.

Breathless, heart racing.

Body pulsing, trembling, shaking and aching.

Pain stabbing, shooting, and radiating.

Skin tingling and itching. Limbs going numb.

Insides turning and burning, digestion exhausting.

Sounds hurting, light draining, so disabling.

Conversation nonsensical. Memory fading.

My experience ignored and misunderstood.

Neglected by those who are meant to do good.

Physically weak and feeling awful.

Despite all this, still chronically hopeful.

- Written by ​Char from ChronicallyHopeful.com
on 3 August 2019

In the background, Char lying on her bed looking exhausted. Her poem about ME is written over the top of the photo. Title reads: Apoem about life with severe Myalgic Encephalomyelitis

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​People With Severe M.E. Share Their Stories

In 2018 I created the "Severe ME is..." campaign for Severe ME Awareness Day​. Severely affected people with ME are asked to complete the sentence "Severe ME is..." in their own words. 

The responses I get ​are powerful and heartbreaking. A very vivid look at the suffering this illness causes. Here are some of the responses I have got so far:

Severe ME is a thief of my human rights, credibility, memories, freedom.
Severe ME is missing solitude, privacy, unstructured time and autonomy. Severe ME Awareness Day
Severe ME is being unable to see, touch, hold or interact with my 2 year old son. Severe ME Day
Severe ME is stopping life and interaction with family friends and health care.

​Click here​ to browse all the responses and share them online. If you'd like to contribute your quote to this series, click here.

* Participants may choose to share their identity or remain anonymous.
* You must be ​housebound or bedridden to participate in this ​campaign.
* If you have any concerns, please read ​
Terms and Privacy

​More About Life With M.E.

A collage of awareness pictures, Title reads: Where to find impactful M.E. awareness pictures
Man in a wheelchair with his hand on the wheel. Title reads: Not all disabilities are visible. International day of people with disabilities.
Picture of colourful wildflowers in a field, Title reads: M.E. Community News, News headlines and blog highlights from week 38 of 2019
Picture of purple clematis. TItle reads: M.E. community news. News headlines and blog highlights for week 35 of 2019
A bed and bedside table with a lamp on it. Title reads: You might be an M.E. sufferer if... part 1, guest post by David A Graham.
Title reads Join The MEcfs Community, Social group for ME & CFS patients and carers. Photo of blue forget-me-notspin by Chronically Hopeful

Let's Stay In Touch

For more frequent updates, why not join me on social media:
My Chronic Life Pages: Facebook | Instagram | Twitter 
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My Gardening Pages: Facebook | Instagram | Candide: @HopefulGardening
M.E. Awareness Pics: Facebook | Instagram | Twitter | The ME/CFS Community
I'm also on: Pinterest | Bloglovin’ | Mix | Flipboard 
Support My Work: Buy My Art | Shop My Favourite Things
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email chronically hopeful char at gmail dot com
Thank you for stopping by. Hugs, Char xx

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Please share this page before you go:
  • Stephen Dixon says:

    Keep fighting sheriff xxx

  • Trent peek says:

    Thanks for the wonderful read.

  • Marian Wood says:

    Wow a very powerful poem!

  • You are such a ray of sunshine and always smiling and seeing the bright side. Thanks for sharing your Poem at SIPB

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