Meet Willeke

Willeke moved to Ireland from her native Belgium in 2002. Diagnosed in 2005, she was intent on being a voluntary advocate for people with MS after her retirement 4 years later. Willeke has been described as inquisitive, tenacious and very independent. She hopes to keep on writing when her eyes permit her to, and to help others see sense in what is often MS-nonsense.

Like everyone diagnosed with MS, you go through motions and emotions. You attempt to find solace with your family at first, your friends sometime after. When I was diagnosed, my family was in Belgium, 880km south east of Ireland. The fact that I was diagnosed 2.5 years after moving to Ireland, the country of my dreams, made my diagnosis feel very raw at first.

When the day of relocating to Ireland arrived, after many ways years of trying to fit in in Belgium, I was over the moon. Invincible. I felt like Wonder Woman without the funny costume. I enjoyed my job, built a new life and loved every minute of it. Then my body started misbehaving and it seemed a little too weird for comfort.

In between feeling those first symptoms and being diagnosed, it went fast. Rollercoaster-ride-times-ten-fast. Perhaps that was half my salvation, as I simply didn’t have time to fret about it. Then it happened, Beaumont Hospital, a neurologist, everything that didn’t fit in with what I hoped my life in Ireland would be like. But it happened, and I had to cope. Just like everyone else with MS.

After being diagnosed, I worked hard at the expense of my physical being and social life. The odd thing was that I loved every moment of it, because MS gave me a new attitude towards life: whatever you do, do it well, but enjoy it. Laid back attitude before diagnosis, truly philosophical after.

As time moved on however, absences from work became very frequent and lasted longer and longer. I became a liability to myself and to my employer as I refused to see that retiring was the only option left. Four years after my diagnosis, fatigue, trigeminal and other nerve pains decided it was time for me to go. 

Retiring was a shock to many, but professionally, it was the best decision ever made. Somehow I felt as if I was presented with a new life, no more falling asleep at work, in cinemas, at parties or lying awake at night of facial and neuropathic pains. From that day onward, I was able to breathe and sleep whenever I needed to without having to justify why.

The first year of my retirement was spent talking with family and friends, readjusting priorities, going to many GP and hospital appointments and reaching out online. Friends kept telling me to write a book about my experiences in Ireland and I laughed at the idea, but slowly a little seed started to grow and eventually I sat back and started to write.  

I am still avidly blogging on ‘Ireland, Multiple Sclerosis & Me.’ It became a chance to give to other people the strength I felt under MS’s spell. Giving a very honest account of what life with MS is, voluntarily advocating for and with MS Ireland, and writing now fills my days, even when I have to rest and sleep every 3 hours. Nine years after diagnosis: carpe diem. Every single day.