Me and ME
A blog post about my experience of living with Myalgic Encephalomyelitis
Back in early 2021, in the middle of the pandemic, I was given my diagnosis. It was unrelated to Covid – I’d already been ill for the five or six years previous to that. My problems began in 2014 when I found out that I had an underactive thyroid. Hence the delay in diagnosis – further thyroid problems had to be ruled out. And given my age, menopause had to be considered too.
Finally, in late 2020 I visited a rheumatologist who confirmed what i already suspected – ME/CFS. ME is a chronic multi-system disease which makes just about everything go wrong. It can affect children and young people as well as older people. It’s nasty. And there’s currently no cure.
There are a few things that make ME different from regular exhaustion. The most important and frankly the worst one is the bizarrely named Post Exertional Malaise (or PEM to those unfortunate enough to know it well). This is the after-effect of any kind of activity and is the thing that makes ME different from other conditions.
The worst PEM I’ve had to date was after a particularly stressful period in my life. Again, early 2021. I had just been diagnosed and I had also been going through an intensive screening process to try and foster my nephews. We found out we were unable to foster them and then the day after, the PEM hit me like a wave. I was in pain everywhere and had no energy – it was like I had flu.
PEM is unpleasant – it can (and often does) feel like you’re dying. I become breathless and fluey and sometimes my temperature goes up. But hands down the worst thing about it, is that every time it happens, it means you’ve made your condition worse.
When you’re initiated into this club that nobody wants to join, you find out that there are many, many people who are much worse than you. People whose bodies are so far gone that they literally cannot move from their bed, can’t tolerate light or sound, can’t eat. And that at one point, they were like you. Cautionary tales abound in the ME world – people who wish they had taken the illness seriously when their symptoms were mild.
So that leaves you in the very weird situation of being physically capable of doing a lot more than you should – with no clear indicator of where that line is. That leads to a constant cycle of spells of imposter syndrome followed by guilt that you’re not taking the condition seriously enough. Am I sacrificing my future by doing too much in the present? Am I signing my husband up to years of being my carer because I haven’t learned to manage my condition by resting?
It comes with all sorts of other illnesses too. It’s damaged my heart. I have to be on beta-blockers because my heart beats too quickly (a very common situation for ME sufferers). I have constant pain all over my body and have started walking with a stick. I’m likely to need a wheelchair in a few years and I’ll almost certainly have to leave work once I’m no longer mild-moderate but in the moderate category.
And then there’s the other side of things. Other people.
In the eighties, ME was called yuppie flu – a thing you got when you just couldn’t be bothered to work. The fact that they’ve now found an indisputable physical basis for ME (thank you Decode ME project) doesn’t deter people from thinking you’re lazy or exaggerating. I’ve been assured that lazy people don’t get ME – because they know how to rest. ME sufferers are often the ones who overdid things. I’m no exception – when I first got ill I was training a lot as well as caring for my young family and working part time at a manual job. Then I got ill, and gradually found myself unable to do the things I’d always done.
One of the problems with ME is that in the mild- moderate stages you don’t particularly look ill. You have this odd relationship with adrenaline which means if you’re out and about and your body is awash with adrenaline, you feel better than normal. So you can socialise, run a meeting, teach a class and look perfectly normal. Then the adrenaline wears off and you’re ill, and shiverey and in pain. But nobody sees that, apart from your nearest and dearest.
It’s hardly surprising that some people will assume you’re faking it or exaggerating your symptoms. You get used to not being believed. You get used to being given terrible advice, even by health professionals. It’s frustrating though – and every now and then it does get to you when somebody infers you’re lazy or depressed or just not trying hard enough. I remember trying to explain my situation to a friend and being told to be more positive. I am positive. It’s how i cope. But the reality of ME is shit and no amount of forced positivity will change that.
So here’s the thing. If you know somebody with chronic illness and you find yourself thinking well, she looked fine yesterday… just pause that thought. Instead, consider that maybe there’s a whole side of things you’re not seeing. That maybe they’re already dealing with a lot, and what they need is support, not ill judged and unnecessary comments.
While
NaPoWriMo 2024, day 3 – The prompt was to choose a shortish poem that you like and to write it’s opposite. I chose While by Christopher Reid, one of the first poems I really loved. It’s about a man going for a walk while his wife stays behind, too ill to leave the house. I love the imagery in this poem and the sense of freedom beyond the confines of a sick-room.
My version considers the feelings of the wife – her world shrunk to one small room. I’ve drawn on my own experience of chronic illness.
I’ve included the original first for context.
While by Christopher Reid
While you were confined to the gloom
of our hushed and shuttered room
I stepped out into the sun
olive trees all the way down
to the hidden, then sudden valley
where I hoped to see things more clearly.
Each tree with unique, twisted grace
asserting rights in that harsh place,
hugging its shade to itself
while flaunting an enigmatic wealth
of drab yet glittering foliage
under which – and this was the knowledge
I’d come for – it formed its fruit
from a pressure like unspoken thought.
While
While you step into the light
And shrug off the memory of night
I stay here with dog and chair
In this place beside the stairs,
Listening to the little sounds
A house makes when no-one’s around.
We laughed when we saw this place –
The gloomy florals, the lace.
Leaded windows, closed fast
imprisoning the house’s past.
A dusty picture of femininity
A glimpse of someone else’s memories.
All my movements forced and slow.
I’m trying not to wait for you.
The Day After
You don’t know what to do –
when your days have been
defined by visiting hours and
your thoughts consumed by
the care of her – of getting
drinks and food and worrying –
and suddenly all that’s gone.
Suddenly her soft salt-and-pepper
hair is no longer there for you
to touch. She no longer needs
you to call the nurse.
Your thoughts are no longer
consumed by numbers on
screens or the colour of her
water or how warm she is. And
then you have to begin to try
to remember what else there
is besides that small room
into which you poured
so much of your love.
This Is What I Know About Blessings
Something which from a distance appears to be a blessing
may easily turn out to be a curse. The reverse is also true.
Sometimes they go unrecognised. Sometimes they are
invisible. The good fairy isn’t always good, or competent.
Sometimes walls crack and dandelions grow in the spaces
that are left. Bread runs out and isn’t often replaced by cake.
Daylight hours are not enough. One day you’ll hold my
hand and wonder how it got to be so old. Time is both
a curse and a blessing. So is love.
Day 25: Forever Young
Today’s prompt was to write about the experience of live music. I think this will be my last of this year’s NaPo – I’m lacking energy and inspiration. But it’s been good while it lasted!
Somewhere several rows back I’m there, in
black Doc Martins and a blue dress (probably)
my long hair plaited to my waist (definitely). I’m standing in
mud. We’re all standing in mud. I don’t know these
people and they don’t know me but we’re there
to see the man with the hazy brown hair and the
electric guitar. Bob Dylan. Glastonbury 1998.
I’m wide eyed and half starved and I had to wade
to get here, and now I’m standing in a dirty dress in a
flooded field surrounded by strangers and
I’ve just watched Nick Cave belt out Do You Love Me?
We did.
Now Dylan’s guitar is chopping through
Just Like a Woman. A dark, muddy sound.
I’m as happy as I’ve ever been.
The rain doesn’t stop but nobody cares.
The guitar, acoustic now, plinks a rhythm
and Dylan’s voice starts to creak out Masters Of War.
Later I’ll remember listening to Forever Young in that field
and it’ll become a self-defining moment, my Woodstock.
I was young. I thought that would last forever.
He never played that song.
Day 25: Let’s Write A Song
Let’s write a song together. We’ll soak
the world in a feathery blue dye. You strum up
a riff steeped in They-Might-Be energy
and I’ll scribble out some words
with a Giants vibe.
Let’s write a song together. We’ll build
something new that clacks and jumps
like a robot army. We’ll stitch in notes
that divide and spill and run
into the cracks we’ve created.
Let’s write a song together. Throw it
against the wall of the birdhouse and we’ll watch
it sloop down, leaving a silver trail. You’ll
finger-pick the remnants which have
gathered on the sandpaper floor.
Let’s write a song together. Let’s wring it
out for good sounds and intentions, which
puff out from it like blue spores. You’ll
provide a fine bass-line and I’ll rustle up
a crunchy lyrical side salad.
Let’s write a song together. We’ll create the
thing that lights up somebody’s shore. It’ll have
the rhythm of rocky sand and glow
like a night light. Let’s write a song which buzzes
and sings and fizzes on the tongue of the world.
Day 23: Birdsong
The jumble of song – that’s the sign I wait for.
There’s such a stillness about the canal through
winter, and then this release, like breathing – a delicate
lacework of sound above the quiet. They don’t
care that I’m here. There are more important
things to think about than a human with heavy feet.
Nests to build, lives to grow. It’s comforting, this
world that keeps on going. New leaves, yellow
and green, catch the shaken song on its way down
and hold it there, thrilling in the life that thrums
from it. An opera of spring. We’re here, they say,
and the trees are full of our music.
Update
I haven’t posted for a few days because I’ve been busy over Easter weekend, but now that’s finished I’m feeling unwell with my usual health issues. I think for the rest of April I’ll just write when I feel up to it and not pressure myself, as right now I’m pretty exhausted. Such is life with a chronic illness…so watch this space basically.
Day 18: Singing
Ritual. The swapping of the same jokes,
the same gentle jibes. Wrapping yourself
in the familiar and its sense of continuity,
all the while knowing that things are about
to change. Singing in the car. Card games
at the table. Vestiges of your childhood
more for me than you these days I suppose.
Every now and again a glimpse of the
child you were, when you’re overtaken
by uncertainty, some new experience
you haven’t quite mastered. Sometimes
you still turn to me, less often now.
But your sky is wide open and flying is
what I trained you for. So I’ll let go, when
I need to. Perhaps we’ll still sing,
differently.
Friends
I decided to write a villanelle for this. It was surprisingly easy, as the prompt was vaguely surrealist so it gave me loads of word options! It’s about the friendship between two surrealist painters, Remedios Varo and Leonora Carrington.
My dove, my love, my pot of jam
My sister witch, my ginger cat
You understand me as I am
My rocking horse, my friend, my lamb
My freedom call, my bowler hat
My dove, my love, my pot of jam
My open door, my window jamb
My horse, my house, my tit-for-tat
You understand me as I am.
My life, my leaf, my wild yam
My unicorn, my chew-the-fat
My dove, my love, my pot of jam
My sorceress, my give-a-damn
My vagabond, my caveat
You understand me as I am
Amusing muse, my epigram
My Sunday best, my laundromat
My dove, my love, my pot of jam
You understand me as I am
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