Living with myalgic encephalomyelitis (ME/CFS) is physically devastating – but the social isolation that comes with it is often less discussed. Family and friends don’t always understand the disease’s hallmark symptom, post-exertional malaise (PEM).
This is a worsening of any, if not all, of a person’s other symptoms after any type of exertion – be it physical, mental, or emotional. It means that people living with ME often have to pace any activity – however small – and spend hours, days, and sometimes weeks recovering afterwards.
What seems inconsequential to non-chronically ill people – washing, brushing your teeth – can cause PEM in ME patients. Any PEM also brings with it the risk of a permanent deterioration in a person’s health – meaning they won’t get back to the level of health they were at before the PEM.
ME/CFS has left me with ‘three comfortable hours a day’
Jane Rigg is a 66-year-old mother of four adult children, and an ex-lecturer- who also lives with ME/CFS.
Very occasionally, and unpredictably, she has been able to do a short walk or two each week, be driven to stay in a friend’s spare bedroom and manage a couple of short trips out in the week, and her neighbour invites her for Sunday lunch – but this is an ordeal.
Her life is meticulously paced. She can tolerate company for very brief periods. Jane says:
Thank goodness my children understand this when they phone or come to stay as my stamina is so poor. They take over everything to help me find a bit of social energy.
Jane was awarded her work ill-health pension, ESA, and PIP and uses the money on a cleaner and gardener. She lives alone and far prefers it that way, as she suffers with very bad air hunger.
She is naturally bubbly, lively minded, and happy. She has a few very simple hobbies and enjoys a lot of life through her children. But she feels very ill for hours each day, and maybe has a total of three relatively comfortable hours.
It’s not enough.
Jane wrote Rushed Off My Feet to describe hers (and likely many other’s) experience of living with ME/CFS.
Rushed Off My Feet
Will you come out to my party she asked,
Will you come out for a drink.
Will you come out for a walk she asked.
And I replied “Let me think”.
It’s Monday today, I fill my slow cooker,
It makes me eight meals to eat.
Then wash, teeth, and tablets; and tidy the sink,
“I’m sorry I’m rushed off my feet”.
Will you come shopping with me she asked.
A meal for my birthday treat.
“It’s Tuesday today; too much to do,
“I’m sorry, I’m rushed off my feet”.
It’s bin day tomorrow, I empty the bags
And drag it down to the street.
Then wash, teeth, and tablets; and tidy the sink,
“I’m sorry I’m rushed off my feet”.
Will you have coffee with me she asked
Or the pub; I’ll save you a seat.
But Wednesday’s the day that I water my plants
“I’m sorry, I’m rushed off my feet”.
I really am grateful, please ask me again,
I need a good rest; I’m beat.
Then wash, teeth, and tablets; and tidy the sink,
“I’m sorry I’m rushed off my feet”.
On Thursday my cleaner is here and I bathe
She does laundry and changes my sheets.
Then wash, teeth and tablets; and tidy the sink,
“I’m sorry I’m rushed off my feet”.
It’s Friday, I fill my dosette box;
Keeping track is a difficult feat.
Then wash, teeth, and tablets; and tidy the sink,
“I’m sorry I’m rushed off my feet”.
I notice you’ve not been in touch for a while
It’s nice to be asked for a meet.
But Saturday’s soup day; I make the week’s lunch.
“I’m sorry, I’m rushed off my feet”.
I chat to my family; my happiest hour.
Some moaning, some laughing; upbeat.
Then wash, teeth, and tablets; and tidy the sink,
“I’m sorry I’m rushed off my feet”.
You never did call me again; I tried;
But our friendship died incomplete.
On Sunday a stranger makes lunch for me.
He knows I’m rushed off my feet.
Featured artwork by Hannah Sharland
