top of page
  • Kate Duder

"Me and ME" - a poem by Anne White

Updated: Jun 5, 2023

ME/CFS

"Me and ME" - a poem, 2022


Anne wrote this poem to get down on paper her situation living with ME, so she could refer to it, not just if needing to explain aspects of it to others, but for herself. She needed to clarify the ‘ground’ she ‘stood’ on.

It took a lot of reflection and a number of days for her to be able to articulate all this.


"I’m several years on now from when I wrote Me with ME, however it is remains my ‘ground’ and stable reference point in many ways. Although still around 6.5, I am now on Superannuation and that assured income, combined with being accustomed to living with ME, has allowed me to accommodate my limitations with more ease".


Me with ME

by Anne White

This is me

With ME

Some people call it CFS (Chronic Fatigue Syndrome)

But most people with ME call it ME

Short for Myalgic Encephalomyelitis

Inflammation of the central nervous system

Which impacts on

A number of systems within our bodies

Varying to some degree from one individual to the next

But typically asking us to live with batteries

Never fully charged,

Maybe never more than half or quarter charged

Maybe almost empty all the time


We have a scale from 1 to 10

1 being totally dependent for all care

10 being in remission

To date at my worst I have been around 3

I’m around 6.5 currently


Like many of us I look pretty well

But it’s hard if you ask me to do anything

Spontaneously


In order to be what you see

I need to pace myself

Consistently


This is particularly important

If I have a commitment

I hate to apologise if I can help it

Which is why I try to prioritise


It’s social outings I most commonly decline

Because timings and arrangements

Can be unpredicatable and complex

Will I be able to multitask if situations call for it?

Will I be able to eat the food or access the type of food I

need when I need it?

Will I be able to sit as often as I need to?

Will I be ok if there is noise and/or bright lights?

Will I be ok if there are environmental temperature extremes

or draughts?

Will I be able to stop talking or rest without seeming rude?

Will I be able to get home if or when I need to?


If you see me in the morning

You might not see me in the afternoon

If you see me in the afternoon

You might not see me in the morning or the evening

If you see me in the evening it might only be for a couple of

hours

Those other times I’m likely to be taking care of essential

activities of daily living … slowly

And otherwise …

Engaged in some kind of resting


People with ME typically get little quality sleep

‘tho they crave it

And unlike many people, for whom an active day brings a

restorative slumber

We’ve got more chance if our activities have been reduced in

number


I know when I’ve pushed beyond my energy envelope because …

My cognitive skills deteriorate

My mouth and nostrils and eyes become drier than dry

My blood pressure is more unstable

My tinnitus is louder

I may be dizzy

My feet are on fire

My cheeks are on fire

My swallow is more impaired

My digestion is worse

I may be nauseous

I may have increased flurries of abnormal heart rhythm

My internal tremor might rev up

My neck get more stiff

My joints more sore

My glands are likely to come up

Ulcers may quickly form on my tongue

There may be stabbing pains across the side of my head

Odd sensations on and under my skin are likely to amp up

I am physically, emotionally and mentally overwhelmed

At one and the same time I am hyperalert, can’t think

straight and have no energy for anything


Sometimes I’ll push the envelope because I’m engrossed or

forget

Sometimes it’s due to an unavoidable and unexpected event


With ME there can be a delay in the onset of pushed envelope

consequences - from a few hours to a day or two

It’s called post exertional malaise and

When we crash it can take days, even weeks or more

to return to the equilibrium we had achieved before


ME is thought to come with a hyperactive immune system

Perhaps this is one reason why I have such strong sensitivities

to alcohol and a number of medications

And why, whilst not anti vaccinations, I’m wary and

have been cautioned, due to potential for heightened reactions


ME is possibly an autoimmune condition

It’s also possible I’m in a subgroup, with another condition as

yet un-named


It’s possible I will fully recover

I stay open to this

And I also know, in older agegroups the percentage recovering

is really quite low


In any event I embrace smallness

And it’s rich life

On the quiet side


I’m grateful I have enough to

Keep me clothed and fed and housed

due to downsizing my home

Some are not so fortunate and

don’t have anything to downsize


I’m grateful I can

Read and

Daydream and

Write


I can drive short distances

And longer if it’s in the morning and

I’m well prepared


It means I can come up here

To this peaceful place where

I’m writing now

Surrounded by birdcall and insect busyness

And the distant roar of surf


This is me with ME

88 views0 comments

Kommentare


bottom of page