We don’t talk enough about the trauma caused by chronic illness - so I wrote a song about it

Today is Severe ME Day and this is my contribution.

Ever since I got severe ME/CFS I lost the ability to run in my dreams (and in real life). I would maybe start the run inside my dream, but immediately remember that I’m sick and that it’s not something my body can do. I would then fall down, unable to move.

I can’t run when I’m dreaming is a song about the trauma of losing your body and about being hidden from life by a debilitating neuroimmune illness (ME/CFS) and contemplating life and childhood memories when pain feels like an eternity.

I’ve chosen to release this single on severe ME day, because it talks about the trauma and isolation of living with severe ME — something I’ve lived with since 2017 (I’ve had ME since 2011). Very little is known about how trauma and isolation affects those of us living with severe ME and how we can be supported to live with this trauma, or self-restore even though we live with the cause of our trauma daily.

Severe ME affects roughly 25% of people living with ME/CFS and our function is compromised so much that we are either house- or bedbound, often unable to do basic self-care activities unaided. You can read more about living with severe ME here.

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Purchase or stream here

All income for the first year (possibly more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp or iTunes.

If you can’t listen to music, then here are the lyrics.

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Lying in bed day in and day out, in isolation from the world, not knowing when it will end feels like an eternity and I would often (and still do) fear for my sanity:

Last night I dreamt of eternity

It was wet and cold and all too bright

There in the distance was my sanity

But something held me back

I would have dreams where I was forced to flee from something (often war or burning buildings or someone chasing me) and my legs just wouldn’t do what they were told. It was like trying to run through quicksand or black cotton mud. Or they would work at first, but then I would remember, in my dream, that I’m not in fact able to run or walk normally and then my legs would stop working. I would often wake up screaming inside my mind:

I try but I can’t run when I’m dreaming

I’d lie if I told you I’ve stopped screaming

In my sleep

I’ve now realised that these dreams were a reaction to the trauma I was experiencing of losing more and more function in my body. I often had episodes, in the real world, where my legs would suddenly stop working and I couldn’t move. I didn’t understand why my body was deteriorating so rapidly. It felt like my body was free-falling and eventually I became bedbound.

I also often woke up screaming inside my mind at doctors who wouldn’t listen, who wouldn’t acknowledge my needs or who didn’t understand the severity of what was going on. Trauma from medical gaslighting is real and it’s something we don’t talk enough about.

Not truly understanding what was really happening to my body felt like losing complete control — and I felt like it was my fault. I was too sensitive for this world was what I was often told (and I bought into and believed) in the early stages of my illness, when in reality I had a biological illness:

When I was younger I was often mistaken
Other’s feelings for my own

The girl in me she was forsaken

I lost myself to them

I am a sensitive being and I used to mistake others’ emotions for mine, but none of this created my illness. I lost myself when I believed that my sensitivity and empathy were the cause of my illness — I felt like every part of my personality, my Self and soul, was wrong and broken.

I would often think back to a vision I saw when I was a child:

When I was a child I saw

A lady with long dark hair
Transparent skin hovering two inches in the air

I often wondered if she was my guardian angel or just a ghost not knowing she was still stuck in between worlds. I remembered the long dark hair, because it reminded me of my mother’s when she was young. The ghost (or angel) wore a long yellow dress with flowers on them and she felt pleasant and safe. I was not scared to see her.

I have chosen to make her my guardian angel, because I needed one at this troubling time.

This song was originally called ‘Two Worlds Apart’, because I felt stuck between two worlds. In my mind I could do all kinds of things, but in reality I was stuck lying down. I started writing it when I still had moderate ME.

I didn’t like the melody of the original chorus nor the lyrics. Something didn’t click. A few years after I wrote the original song — and when my body had moved into the severe category of ME/CFS — I finally discovered what the song was really about and I could write the chorus and pre-chorus. I finally understood the song was about trauma and about losing control, losing the body and being hidden away, wondering if this pain will go on for an eternity.

Jonas Müller (my brother) plays the piano and Matthew Adomeit plays the bowed double bass. François Perdriau has mixed the song and Pete Maher has mastered it. I feel so incredibly lucky to be able to have my song accompanied by such excellent musicians. They really brought out the vibe in the song.

All proceeds for the first year (probably more) will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. You can support the cause by purchasing the music on Bandcamp and iTunes and by sharing as wide and far as possible.

Tell me…

Are you affected by chronic illness isolation or/and trauma? How do you cope with it?

Have you ever seen a ghost?

What are your favourite lines from the song? Here are the lyrics

I’d love to know in the comments below.

Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.

Did you miss?

My debut single is out! Salem: A song for the disbelieved

How I created my album from bed and wheelchair

When doctors turned their backs on us, I wrote this song

Meditation: Connecting to the Earth

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

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I want you to know…

I’ll be sending out my entire album in a month’s time. I don’t know what my energy levels will be like during this period as I’ve never tried this before. I’m expecting lots of emotions during this release time and emotions can be taxing.

So please bear with me during this upcoming period. I will most likely veer off schedule and I cannot say how often I’ll be sending out essays or meditations.