A Living Death: Life with ME/CFS
Imagine spending decades living with pain, days on end unable to leave your bed, months feeling exhausted, endless tests and procedures and years without an answer to that lingering question. Almost half of Australian women are living with a chronic illness, with over 20% living with a combination of two or more chronic conditions. Over the next month, Mona explores how these conditions are affecting women in our communities. This week, we start this journey with Melanie Ifield's experimental piece about her challenges living with Myalgic Encephalomyelitis (otherwise known as Chronic Fatigue Syndrome).
I died aged thirty-three.
It wasn’t a sudden process, like ending one heartbeat to the next. It took me five years to understand it was gone, to look back and pinpoint the moments it slipped through my fingers.
I can picture it in my head. The fictionalised scene as life left me. I’m standing on a pathway. Just ahead is another me; my life. She turns to look back as a large black cloud boils up behind her. It claims her and the last thing I see, as she fades into it, is her outstretched hand begging me to save her.
I never do.
I never can.
It’s too late. It is like watching that Terminator movie when Sarah Connor tries to warn her future self through the wire fence. The apocalypse hits them and turns them to dust.
Oh, this sweet peaceful un-complication
enough to make my heart ache
this pain free existence I see
My head splits like ripe watermelon
can’t get around acceptance
throw it out as old grapes
fermented in the rottenness
of my own body.
And now curl around brief agony
while cuddling a forever
where pain is needle insidiousness working its way
like worms in a body
you no longer want – no one wants
as it ‘failed to deliver’
on its design specification.
It is mid-March over ten years ago. At least, that is the way I remember it. A warm and bright sunny day I would normally be out in, either exercising or helping in the garden. This day I am in bed, propped up on multiple pillows, as I can no longer sit up nor hold my head up. I have the TV remote under one hand so I only have to move my fingers for control. I am comfort-watching Buffy: The Vampire Slayer. Now, TV shows and characters fill the place of friends so I can switch them off when I am tired. They are a shadow of my old reality. I need safe, secure and stable, both in life and in my viewing.
Mum comes in with my hardboiled eggs. I am struggling to have the energy to digest anything, so the easier the better. I rarely leave my bed, so she brings it to my side.
'Lunch. You want to turn that off?' She nods at Buffy. I twitch my finger and it pauses.
She holds out the plate and I try to lift my arm to take it. There is a frightening pause after the message my brain sends. The arm doesn’t move. I simply don’t have the strength to lift it. I look at her in panic.
'I can’t! I can’t take it.' Tears gather in my eyes. Panic sends my heart skittering around my chest like a startled bird.
'It’s okay, honey. I’ll do it.' Mum sits on the side of the bed and carves up an egg with the edge of the fork, her eyes full of worry. She holds it out to me and I take a mouthful, tears leaking down my cheeks, leaving little trails of cold on my flushed face.
Embarrassment and shame, grief and despair; emotions I am going to know so well in the next few years are choking me inside making it hard to eat, as my mother hand-feeds me like a toddler.
I am thirty-six.
I have found, as many others with ME/CFS have, that if I overstep my body’s boundaries and try too hard to experience what others may feel is simply a normal day, the effect can be catastrophic. It is as though every radio station is tuned in at once. A barrage of information floods the system, unfiltered. Too much to look at, focus on, listen to, every piece of the information a separate stab as my overwrought senses cannot stream them seamlessly. Without red tinted lenses, or block out masks and earplugs my body is overwhelmed and can go into shock.
This presents itself as pain, migraines, or muscle collapse where I cannot hold my weight up nor speak at a volume anyone without their ear to my mouth can hear, vomiting and admission to hospital. Needless to say, I have learned to play within my body’s limits.
in my dreams I am running, jumping, swimming…
in my dreams I am walking up mountains and laughing.
In my dreams I am riding my beloved horses again,
Strong. Confident. Capable.
Dancing to my own tune.
In my dreams there is only joy, and for that brief time, no pain.
I am whole and myself again...
You cannot live in dreams.
It is widely recognised within the ME/CFS community that only about five percent of patients return to complete normal functioning and the life they had pre-ME/CFS. Twenty-five percent are bed, wheelchair or house-bound for the remainder of their lives, some so severely impacted they live in darkened rooms with no noise or interaction with others to cope with existing. The remaining seventy percent live on in a twilight zone of reoccurring symptoms, trying to function and often crashing. They quite often lose friends, relationships, jobs and homes. Not fully participating in life, but not dead, the term they use for themselves is ‘the living dead’.
Isolation is not a new thing for me or the millions around the world with ME/CFS. We have a head start on coping with the aloneness others are now experiencing in the world changed by the COVID pandemic. Many of the ME/CFS community have been isolated for ten, twenty, even thirty years. I am completing my fourteenth year unable to work or live in my own home and make my own choices. Instead, I live back at home with my parents who care for me, sometimes feeding me, sometimes taking me to hospital and always being my social contact for the day.
Years ago, I huddled at home unable to go out and participate in my old life, unable to interact with my old friends. Now, the world huddles beside me with this pandemic.
I listen to the stories of those newly experiencing isolation and the solitude of their own company, and my heart breaks for them. But oh-so insidiously, underneath my heartbreak for them, is rage — for the chronically ill community who couldn’t access telehealth or mental health professionals as they coped alone. This newly compassionate world makes many of them feel as though their lives didn’t matter enough in the ‘land before COVID-19’. Not until the majority were hurting and found themselves in the same boat were their plights illuminated.
I taught myself to walk and cook and eat again
but life as I knew was over. Door closed.
I prepare for the unknown future with a body I can’t rely on
praying, praying, for strength.
Improvement and freedom a dream
but they are my dream.
Melanie is an Australian writer of fiction and poetry. She has published two adult and five children’s novels, short stories in literary journals and poetry in three chapbooks. She also publishes flash fictions on Instagram. She is currently a judge for the Aurealis YA short story awards 2022 and completed her Masters of Creative Writing in 2022. Melanie's short story, 'The Lonely House', won first place in the Murrumbidgee Short Story competition and features in Issue 3 of Mona Magazine.