A Poem About Life 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.

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.

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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.comon 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