Diary Day 111: From Not Having ME to Having CFSME – What’s It Like?

This week I tried to explain to someone what ME is like.

I tried spoons, I tried symptoms, I tried the lacking of normality then that night I had a dream. It was so strong that when I woke up I thought that it was telling me what it was like.

Here it is.


Imagine you are standing upright in a light and bright room, it is open, wide and so sunny and full of light. 

Around you are windows that stretch all the way along the walls, they are in front of you and around you.

If you turn around they are behind you too. The room feels good to be in, enjoyable, meaningful and with potential.

They have no curtains but you can see edges of shutters that open and close on the outside of the frames and from where you stand the edges are wide open.

The light is extraordinary. It floods the space you are standing in, making you feel you are floating there, buoyed up and fluid.

Below is a firmness and if you rest on it you feel steady ground.

There’s nothing  in the room with you, there doesn’t need to be. Each view outside of each window are aspects to you and your life.

Outside each window is a different view and they are tangible; you can watch them or reach out and touch them if you choose.

You can float through the windows and join any one you choose like passing through air.

People are there, your interests are there, your likes are there (and your dislikes). Your memories can be played in each screen if you choose to.

It’s interesting, fascinating, light, easy and warm.


The ground becomes part of your feet, your legs, your arms, your head.

In the same space the views are muddy.

As you feel worse, more tired and in pain the shutters slowly close on each view.

It happens quietly and with no judder so you barely notice.

One, by, one, they, close, and, go. The windows become the walls instead.

As they shut you sink deeper into folds that open up to reach you.

The light matters now, it needs to shine darkly to be comfortable.

You cannot stand longer, your bones say: sleep, sleeep, sleep now.

Your head aches from the remaining light. You turn away.

You don’t recognise things now they are views of strangers.

Corrupted memories and vague reminders.

Your body curls up on the floor that softly envelopes,

There you perpetuate and remain.

Copyright Lindy 2016. 

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