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 bouquet of pink flowers, Title reads: M.E. Community News, News headlines and blog highlights from week 39 of 2019
A long list of symptoms, title reads: my symptoms of ME/cfs in 2015. Dozens of fluctuating symptoms.
How I overcame insomnia BLOG
Blue emojis with quizzical look on their faces. Title reads: Frequently asked questions about M.E. Elaborating on terminology and topics I commonly refer to.
A man sleeping next to his dog. Title reads 12 tips to help you adjust to your new normal. Are you struggling to adjust after your ME / CFS diagnosis?
A bouquet of blue hydrangeas, Title reads: M.E. Community News, News headlines and blog highlights from week 40 of 2019

​Thank You For Stopping By!

​​For more conversation on this topic, why not ​join me on
My Chronic Life Pages: Facebook | Instagram | Twitter | The ME/CFS Community 
My Art & Crafts Pages: Facebook | Instagram | Twitter | My Art Shop 
​M.E. Awareness Pictures: Facebook | Instagram | Twitter | Gallery 
My Amazon Wishlists: ​Art & Hobbies | Books
​I'm also on: Pinterest | Bloglovin’ | Mix | Flipboard 

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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