Severe M.E. Awareness day: Thunder clashes in my brain

Severe M.E. is truly a living horror (or as many describe it, a living death because of the severity
of suffering it causes). One that truly no one else can imagine. I will say it again, a picture can't show what severe ME is, a video can't, seeing it every day as a family member can't. It truly is impossible to imagine the severity. 

ME is a severe illness at all severities but mild ME didn’t remotely prepare me for how bad it has got at times, nor has that truly made me aware of what its likes for people so much worse than me. So please take the time and listen to peoples words. Please understand the amount of energy and time it takes for people with Severe ME to try and write and educate, and also how many are unable to despite how desperately they want to. 

Severe ME can smother every light of a persons being. It suffocates it and can trap someones personality inside. I am not the girl I was. With lack of energy comes lack of ability to express it. You think of the obvious things, I can't go out, ride horses or play hockey, but I also can't sing along badly to music. I can't spend too much energy laughing. 

ME is a very poorly recognised illness at any level of severity but even more so for those severe. Doctors will see very few severe ME patients in their career, maybe only one and they will often not recognise it. About 25% of ME patients are severe, although that has a huge range in severity itself. 

Severe ME day is on the 8th of August, the birthday of Sophia Miraza who died of ME. It is to raise awareness of those suffering with it and remember the many we’ve lost. 

Here is a poem I've written about Severe ME (which next month I’ll have had for 3 years):

Thunder clashes in my brain, 

There's a storm at sea in me, 

It goes by the name of Severe M.E.

Crash. The first wave hits,

Its the exhaustion,

A word that pales in comparison. 

My bed has become quicksand,

As my limbs move, it seeps over my body, Gripping me and holding me hostage. 

Pain consumes my being,

Every type you can think of somewhere in my body,

It's a hammer, a knife, a deep ache and a throb. 

PEM creeps up to attack from behind,

I dared to do too much,

Now I will suffer an unknown time. 

My head pounds,

Squeezed like a vice,

My brain rattles inside. 

My thoughts float around in endless despair,

Stuck in time,

I’m confused, but all too aware. 

Light pierces my eyes,

Sound echoes around my head,

Scent suffocates me.

I'm trapped in the bars of this cruel disease,

Where restrictions are so tight,

I have so little energy to try to win this fight. 

Drowning underwater,

The gasps for breath,

I long for one where I'm free,

Yet the torrent continues,

Every symptom hits like a wall,

I can't continue anymore,

I ache to fade away,

Shut my eyes,

For a better life, I pray.

The lights go out,

For me, that's a relief at last,

My body can attempt to recover,

As even my nightmares are an escape,

I will walk pain-free,

Monsters lurk but not the one called ME.

Yet I wake up the same,

Do it all over again the next day,

A cycle I can't break out of because,

Thunder clashes in my brain,

There's a storm at sea in me,

It goes by the name of Severe M.E.

M.E. Awareness Day poem 2023

Myalgic Encephalomyelitis, the name they give,
An illness so misunderstood, its hard to live

It turns out invisible,
Means dismissible

The cause unknown,
We are left alone

Symptoms unseen,
My life robbed of all that could’ve been

M.E. the illness i cannot prove,
My limbs are weak, I cannot move

The waves drag me under,
The symptoms hit like thunder

Then the concrete feeling sets in,
My world turns dim

My body broken, my sprit drained
A life half lived, forever restrained

Pain and exhaustion beyond compare,
A struggle to breathe, a gasping for air

I lay in bed for days and weeks,
Not able to find the energy my body seeks,

Weighed down, my head throbs and my eyes burn,
My body aches, my muscles quake, but met with unconcern

In silence and stillness I exist,
Living in a body that always resists

Now trapped inside the four walls of this room,
I have little life, my body consumed.

Days blur into weeks, weeks into years,
A life thats been stolen, a future full of fears.

This is the life of M.E.
A chronic illness thats hard to see

Waiting for someone to lift this heavy veil,
To set me free from my body’s jail

For now I lay here day after day,
Hoping for change, in some way

But funding is missing,
It seems no one is listening.

We fight to get our voices heard,
Not listened to, but not deterred.

You never see,
You ignore M.E.

An audio recording of this poem read by me and photos of M.E. sufferers

In my head I wonder...

Mentally living with this cruel illness can be really hard. Aside from the physical pain and suffering the symptoms cause it’s had so many knock on effects. Losing friends, losing my education, my activities that brought joy. Having to fight day in day out for basic support, medical attention and access. Not having enough to occupy or distract me from the thoughts that go round in my head. They swirl around and overwhelm me. 

I end up wondering why it’s me suffering like this and what I did. The reality is I know I did nothing other than have a rubbish immune system and get shingles. 

But I’m so tired. Tired of fighting. Tired of wondering. Tired of the suffering this community endures. 

So here’s a ramble:

I’m in my head. 

And in my head I wonder… 

I wonder what you are thinking of me, whether you are judging me. 

Thinking I don’t want to get better or want to thrive. 

Thinking I somehow want this life. 

Or want the invisible attention. 

I wonder about my worth. 

Whether you see me as less because of my illness.

…I do. 

Clearly my friends did. 

I wonder why they walked away. 

Didn’t know me well enough to know I was trying my best. 

I wonder… 

Wonder why my life is like this.

Why everyday is a fight for a different type of support.

Why I'm constantly let down and neglected. 

Wonder what I did to deserve it. 

Why it’s me. 

How others go on about their lives. 

Making new memories, acheivements and adventures. 

Wonder why my life got put on pause. 

Wonder how time slips away yet doesn’t pass quick enough. 

I’m in my head. 

So deeply lost in there. 

I’m so tired. 

So tired of wondering. 

The thoughts spin.

The world I'm immersed in. 

Just my thoughts to occupy. 

…I wonder.

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.