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
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