Can you tell us more about your illness?
“In 2009 I was diagnosed with the autoimmune disease Multiple Sclerosis. MS affects my nerves. Stimuli no longer flow well to my muscles. When I was diagnosed, I had difficulty walking and tired quickly. Those complaints arose, but ebbed away just as quickly; a characteristic of the early stages of MS.
I deteriorated and the symptoms continued. After three years, I could barely walk and was confined to a wheelchair outdoors. MS is a progressive disease and according to my neurologist I would get worse and worse. My vision of the future collapsed. I thought it was terrible, but I didn’t want to give up. I am no longer wheelchair dependent, because I have started to listen carefully to my body. I took my chance when my body felt good enough to move and practiced so much that I no longer have to use my wheelchair.”
What is your way of life?
“The foundation of my lifestyle is what I call a ‘growth mindset’. I turn problems and setbacks into opportunities and possibilities. I live very consciously according to the pillars of nutrition, exercise, stress, environment, health care and communication. I pay attention to those pillars through which I am in constant conversation with my body. Every day I ask the question: ‘what do you need?’ The answers my body gives are not always pleasant to hear. The result is that I have to make choices that are not always fun. For example, I found out that my symptoms worsen when I eat gluten and sugar. Lactose doesn’t make my system happy either. I can only drink alcohol in moderation.
I try to move as much as possible when my body allows it. I also have a special morning routine; I drink one every morning bullet proof coffee. That is black coffee with MCT oil or butter oil, ghee. That fat coffee is really my boost to start the day.”
Are you currently at your target weight?
“New. At the moment I am in menopause, my hormones are running away from me. I eat neat, but my waist size is more than it ever was. My weight is not increasing to an extreme degree, but is getting heavier. MS has no influence on that, by the way, this is just part of the menopause for me.”
How are your children coping with your illness?
“My children were teenagers when I was diagnosed with MS. It was very confusing for them, they did not know the disease and the future was still uncertain. We are a strong family of four, but the uncertainty makes it hard. Sanne and Niels keep watching me. They see from a great distance how I am doing.
No one can say how my disease will develop. It is and remains a progressive disease so I can’t rule out that I will get worse. But it gives me hope that I am so much better off now than I was 10 years ago.”
How often do you exercise and what do you do?
“I prefer to cycle daily, but my body has to allow it. I want to take a long drive of an hour and a half once a week. I also try to do yoga and abdominal exercises every morning.
I make sure I always have a new goal to work towards. For example, this year I’m going to climb a mountain in France by bike. Ten years ago my husband took part in the Eleven Cities Bike Tour. Tears streamed down my cheeks as I sat on the sidelines in my wheelchair. I really wanted to participate but I couldn’t because of the rules of the event. I could have easily competed on an e-bike, but understandably the event didn’t allow it. I was sure there were a lot of people on the sidelines with me. To change that, I founded the Leef! set up.
Together with my son I organize ‘unlimited’ events, in which people can participate instead of standing on the sidelines. In Friesland this is the Unlimited Eleven Cities Tour and in Brabant the Unlimited Vuelta Brabant. Everything is allowed: electric drives, rollators, wheelchairs, half stages, people are even allowed to participate for only 10 meters and then cross the finish line to loud applause. People with a chronic condition or a disability already live like top athletes. They deserve appreciation and applause.”
A neurologist on MS
“Multiple Sclerosis, MS, is an inflammatory disease of the nervous system,” explains Willem Bouvy, MS neurologist at the Diakonessenhuis in Utrecht. “Patients can suffer from various neurological complaints, whereby the complaints often come and go. Many patients with MS have progressive complaints, in others the disease can disappear somewhat. Permanent complaints can arise, especially later in the course of the disease.”
Bouvy: “You can’t help getting MS. But treatment in hospital, combined with a healthy lifestyle, does have a beneficial effect.”
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