M.E and Me

Today is M.E Awareness Day

I got ill in 2013

After I got the flu

For years I was told over and over 

‘It’s just Post Viral Fatigue Syndrome,

With rest you’ll recover’

But I did not recover 

I felt frustrated 

I blamed myself 

I couldn’t work out why I couldn’t snap out

Of my overwhelming fatigue

And fog that clouded my brain

And why every step I took

Felt like I was being weighed down

I thought it was me

I thought I was doing something wrong to feel this way

I tried everything

Then in 2017

The 4th July to be exact 

I finally got a diagnosis 

I got told I had M.E

Myalgic Encephalomyelitis

Suddenly I could stop blaming myself 

I had a name

My symptoms were not my fault 

What I was feeling was real

But there was no cure

Not even a treatment 

No magic pill to make the M.E go away 

I must simply learn to live with my M.E

As the years went by

My M.E faded into Severe M.E

I am a statistic 

1 in 4

The 25%

One of the #MillionsMissing

I live in my bed most of the day

I get around in my wheelchair

Rare trips out to feel the fresh air on my face

My Batec is my happy place 

Where I feel free 

I try to have some normality 

Spend time at my craft desk

Or even do activities in bed

But for every action there is a reaction

And the M.E protests with

Post Exertion Malaise

Those three words

Mean such a lot

Sometimes the smallest thing

Will flare up my symptoms 

It’s like having the flu

And the worst hangover 

And not having sleep for a week 

All rolled into one

That’s how I feel all the time 

What did I do to feel so bad

Was doing that really so bad

For the M.E to over react 

For my M.E to leave me

Unable to sit; to talk; to move

Only able to lay there in the dark

With only my audiobook on the lowest volume for company

The pain in my body

In my legs especially

To high for the pain score to register 

How long will this crash last 

Days, weeks, months

Or even years?

I’ve only ever stabilised and dipped 

I hold onto hope each time I dip

That I will recover back to how I was before 

There is no end in sight 

Help is hard to come by 

Doctors don’t understand M.E

Services are a postcode lottery

Care was a fight

I only got care

When I became so unwell

I cannot care for myself that much

I rely upon someone else 

For all tasks of daily living

Medication only offering me some relief 

Trying every option

My mental health affected

By my chronic illness 

Quality of life 

Sometimes I wonder what that is

I’m only 32

When will this M.E nightmare end

DecodeME was promising 

Changes in my DNA

Markers in my immune system to explain the onset

And in my nervous system to explain my pain

Proof that it’s not all in my head

Hopefully they’ll develop a breakthrough 

Some sort of treatment 

Each day is a struggle 

A fight with my multitude of symptoms 

Treading on eggshells 

Trying not to overdo it

Trying not to crash 

Grieving for me pre-M.E life

For now until a cure is found 

It is just M.E and me