New kit gave me a real insight into living with MS
| Published date | 26 April 2023 |
| Publication title | Wishaw Press |
Although, as Amy explained, everyone's MS is peculiar to them, she experiences the most typical symptoms, which include problems with vision, limb movement, sensation and balance.
She's also had to teach herself to tolerate the constant pain, which easily surpasses that of childbirth - by a long shot.
Her children, Chrissy and Ruaridh, were aged only eight and six when, 12 years ago, she was diagnosed with MS after experiencing numbness in one side of her face, extreme tiredness and an inexplicable, uncharacteristic tendency to become highly emotional and dissolve into tears. Fearing how her visual impairment might progress, she asked husband Peter, whom she describes as "an exceptional carer," to paint their home in bright hues and plant flowers in the garden for fear she'd lose the ability to see colours.
When the left side of her face drooped like it had melted, it terrified her kids, making her son wail and run to his room.
She had to find a way of explaining to her own children, and to their friends, why she was "walking funny."
Amy needed them to understand that she wasn't drunk. And she had to make them appreciate that there was a reason why she could no longer do many of the fun things she once did.
That's why, after her diagnosis at the age of just 34, she set about creating a kit that would let other people, especially carers, experience what it is like to live with MS.
The kit began with Amy explaining to her children the 'spoon theory' - a metaphor describing the amount of physical and/or mental energy that a person has available for daily activities and tasks, and how it can become limited.
The theory was coined by writer and blogger Christine Miserandino in 2003 as a way to express to a friend over lunch how it felt to have lupus.
Giving her friend a handful of spoons, she described each of them as units of energy to be spent performing everyday actions, representing how chronic illness forced her to plan out days and actions in advance so as to not run out of energy.
The metaphor has since been used to describe a wide range of disabilities, mental health issues, forms of marginalisation, and other factors that might place an extra and often unseen burden on people living with them.
The spoon theory helped Amy's children...
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