I wish

I wish I didn’t spend the day waiting for darkness to fall, 

I wish I didn’t spend the summer waiting for the cool. 

I wish I could have the curtains open and see the sky,
I wish I could watch the birds fly. 

I wish I could let the light in, 
I wish I didn’t need it dim. 

I wish I could see the flowers grow,
I wish I could see the trees that blow.

I wish the sound of singing or the birds brought me joy instead of pain,
I wish ME was not a ball and chain.

I wish laughing too hard still just brought a sore face,
I wish even my emotions, didn’t have to be paced. 

I wish I could watch as the seasons change, 
I wish my life had not been rearranged. 

I wish I could see a friend,
I wish others could comprehend.   

I wish for experiences of my age, 
I wish I was living my teenage stage. 

I wish my life was something other than a fight, 
I wish this illness did not have such spite. 

I wish for new memories on the days I’m full of grief, 
I wish I did not fall victim to this thief. 

Severe ME.

But I’m thankful I can join this community and alliance,
And with that, we have defiance.  

So, 
I wish for a future my future,

I wish for relief for us all.

Severe M.E. - When life doesn't just fade away from around me, I further fade away from it.

There isn’t a picture I can take to show Severe ME or of my worst. And I don’t think what I can say can reflect the truth. These words seem dramatic pale in comparison to reality. I continuously find myself at a loss for words over the horror of Severe ME - knowing full well I am not the worst, yet it still takes me by surprise as it creeps up and smothers me.

It's Severe ME awareness day/week, the 8th of August. Next month I will have been bed bound for two years and reliant on a hoist for ocasional transfers, having to do everything in bed, living behind glasses and curtains. July, after Covid, is the severest I’ve ever been. I can't believe how far I've deteriorated in this year.

To try and describe Severe ME, and the many symptoms that fluctuate would be like my head is underwater, often unable to understand words and things have faded away as life around my body passes by. Delirious due to the exhaustion, too drowsy to be aware yet not able to sleep. A migraine that feels as if my head is being squeezed by a vice and how it brings intense nausea and painful light sensitivity that burns my eyes. It’s the crushing weight of symptoms. When I can hardly think and trying makes me crash. When every breath is a fight that drains my energy. How I cry from how bad the sound of a TV in another room is. The words I’m unable to speak, trapped in my brain and incoherent. The messages I'm unable to send, people's lives I'm unable to follow as my life and world shrinks more.

When life doesn’t just fade away from around me, I further fade away from it. Trapped in this bed and trapped in my own body - fighting to speak and to move, but my body only imprisons more. An internal war that I have to take lying down (literally).

It has been overwhelming and terrifying. How much of a landslide PEM and this illness is as my life snowballs out of control until I've ended near the bottom of the scale. But I know I am nowhere near the worst. I know how much worse it can get. I’m mostly able to share and find comfort with others. 

But please talk about the severely and very severely affected, this illness is a horror show that many are unable to express, and those who aren’t here.