ME/CFS: When I sold my wife’s bike I said ‘goodbye’ to a healthy life, for now
It’s a win for the disease. But to the former skiers, climbers, campers and weightlifters: I salute you all.
A few years ago my wife bought an electric bike, hoping that her lack of mobility might be aided by the extra nudge from its battery. She was hopeful. But she barely got to use it. We watched it gather a thick coat of dust in our garage in Amsterdam and eventually she asked me to take it back to the same shop from where we bought it from.
I walked in and asked the shop owner if she would consider buying it back from us and she looked at me puzzled.
“I don’t understand, is she not using it any more?” the shop owner asked me.
“No, she doesn’t need it,” I replied.
“I am sorry. But what has happened to her?” she then inquired.
“She has a chronic condition called ME, and is at home all day. She can’t work any more and doesn’t need a bike,” I said. The short version. The long version is here.
“I am so, so sorry to hear that, Rob,” she said. “I didn’t realise things had got so bad. What can I do for you? And please send Marjolein all of my love. I am so sorry.”
When you get ME you are forced to stop leading your former healthy life. In its place a new life emerges that is limited in geography and heavily restricted. Instead of nights out with friends or family, you spend more of your time researching your own condition — desperately trying to hack your own body — and talking to fellow patients, lawyers, doctors and therapists. And occasionally, the odd government disability assessor.
My wife’s world is now two rooms — her bedroom and our living room — where she lies on the floor for several hours of the day. ME, Long Covid, Chronic Lyme or any other chronic illness, means an abrupt end to pretty much everything you did before. Gone are spontaneous things like an outing to the cinema, a city weekender, day trips or walks in the park. And along with it goes a whole lot more.
Selling her bike was a victory for the disease: a sharp reminder that her mobility is gone, for now. That this is our life and that returning to normal is optimistic, at best. The loss of things you loved: the missing bike, the climbing equipment that got mothballed, or the total absence of music. None of this can be captured neatly in a disability claimants form, and it is precisely the kind of moment that sums up life with chronic illness.
It’s only when you share a story and its effect quietly ripples across cyberspace — and someone else replies — that you realise that she’s not alone. All ME patients are forced to trade in their healthy lives, in quiet despair, and adjust to the restrictions that this disease places on you.
So, it’s a win for the disease for now. But here’s to the former bike owners, the skiers and snowboarders, the runners and climbers, the skaters, swimmers, dancers, campers and weightlifters. I salute you all.
The office worker:
The snowboarders, skiers, surfers, hikers and runners:
The horse rider