M.E. isn’t tiredness, But I’m tired of this…

M.E. isn’t tiredness, But I’m tired of this…

I am tired of being neglected by the medical system. Left without care or treatment. 

Tired of seeing people left at death's door, pushed to it or through it by medical professionals. 

Tired of friends and I going to hospital, being so worried about how we will be treated and whether we will be made worse. 

Tired of fighting for my needs to be taken seriously. A different fight every day. Fighting and being let down. 

Tired of begging for help and being thrown crumbs. 

Tired of the petitions that only we take interest in. The awareness only we raise. The fight only we engage in. The protests we can’t attend.

Tired of not having the energy for that. 

Tired of worrying whether we will ever make it long enough to meet in person. 

Tired of trying to convince people of my illness. 

Tired of trying to get recognition and understanding from people who show no empathy. 

Tired of charities not doing enough. The government doing nothing and everyone just watching on or unaware. 

Tired of being in this situation and not having the energy to fight for the better we need.

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.