There's only one way to deal with the undignifying symptoms of chronic illnessesby Ruth Nichol
After she was diagnosed with multiple sclerosis, Shona Daubé learned how to live with chronic illness with a smile.
These days, her essentials include wet wipes, incontinence pads, spare underwear and emergency snacks. “I’m on a special diet called the overcoming multiple sclerosis diet and quite often you can’t buy the right kind of food to eat,” she says.
She also packs extra multiple sclerosis (MS) medication and sometimes she takes a walking stick (she has four of them, each decorated differently).
“We often joke about those large bags full of every conceivable thing a parent of young children might need when on an outing,” she writes in Does My Bum Look Big with this Stick? “Going out with a chronic illness is no different.”
The book, which Daubé is selling online and also distributing free to people with chronic illness, is subtitled “How to maintain a sense of decorum and style when your body lets you down”.
“It’s not a how-to book,” she says. “It’s just saying this is part of our lives and we need to have a bit of a laugh about it. It’s about maintaining your self-esteem. If you can laugh about it, you can come out with your dignity intact.”
The list of potential indignities is long: urinary and faecal incontinence, flatulence, sweating, fainting, falling, brain fog and vomiting. And although these can affect people with conditions such as MS, Parkinson’s, muscular dystrophy and irritable bowel syndrome, Daubé says they are rarely talked about.
“Even when people with these conditions get together, they have to feel really relaxed and safe to say that these things have happened.”
Daubé, who was diagnosed with MS five years ago, wants that to change. She doesn’t mind admitting that she is occasionally incontinent – one of the consequences of the drugs used to treat MS and also because the disease can cause loss of muscle control.
She’s particularly outspoken about New Zealand’s general lack of public toilets. “It’s as though the fact that people go to the toilet is a hidden secret. It’s something that every person does multiple times a day, but we don’t have a sufficient number of public toilets to cater for this.”
Existing public toilets often lack the facilities needed to carry out “remedial work” after an unfortunate accident. “We’re not asking for much – just a few hooks to hang spare clothes on, a few handrails and maybe an incontinence pad dispenser.”
She points out that at least women’s toilets have sanitary units to dispose of used incontinence pads, but she wonders how men cope.
For Wellington man Jeremy Seed, coping involves trying to avoid getting into a situation where cleaning up in a public toilet might be required. The desk-based army officer was diagnosed with MS in 2011 and, like Daubé, he has experienced occasional faecal incontinence.
He’s made a point of getting to know his body’s rhythms and patterns and is always aware of where the nearest toilet is. “It’s more about behavioural modification and being smart, so you don’t have a coffee [which can stimulate a bowel movement] until you’ve been to the toilet.”
Incontinence isn’t a problem for Sela Brass, who has chronic regional pain syndrome, a nervous system disorder that causes pain throughout her body and especially in her eyes. But vomiting is. When her pain gets too bad, she throws up – and not always in a convenient location.
Rubbish bins can be useful, but her preferred receptacle is the air sickness bags provided on planes; she gets friends to collect them for her. However, she has found they’re not always vomit-proof. In an incident described in Daubé’s book, she once vomited into a bag during a job interview, only to discover it had a hole in it.
Like Daubé, Brass tries to see the funny side of chronic illness. “You definitely have to be able to laugh at it. I also try to practise gratitude every day and form good relationships with people. If I didn’t do those things, I would just stay at home and put the covers over my head and say, ‘Flag it, it’s just too hard.’”
Does My Bum Look Big with this Stick? by Shona Daubé (Pink Cottage Publishing)
This article was first published in the October 6, 2018 issue of the New Zealand Listener.
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