Carlien (37) has MS: ‘I didn’t know if I could take care of a child’ | Stories behind the news

“I literally wake up every day with MS, as if I’m putting on a coat of complaints on the edge of my bed. Walking is difficult, I suffer from fatigue, balance disorders, tingling in my body and sometimes I see less well. I have also regularly suffered from bladder problems for years, caused by the signals from my brain not being properly passed on to my bladder.

When I was younger, I suffered from urine leakage. I’ve had periods when I walked with a Tena Lady in my underpants and felt like an old man. That was very bad and it made me insecure. The incontinence has passed, but nowadays I suffer from an overactive bladder with periods. Sometimes I’m fine for months and then suddenly every two weeks I can get huge stings in my bladder and lower back, like my bladder is wringing itself out and I’m peeing bits of glass.

I really can’t do anything anymore, except take painkillers, drink a lot and take rest. Sometimes such an attack lasts a few hours, sometimes a few days. Because I don’t always feel whether I have urinated properly because of the MS, I am also sensitive to bladder infections. That too is annoying and painful. I notice that bladder problems due to MS are not often discussed. I am not ashamed of it myself and I always talk about it openly. I have had a lot of support from the guidance of a specialist nurse, but in any case this is one of the most annoying symptoms of MS for me, because it can really put me down when my bladder plays up.

Searching for balance

MS is a capricious disease and at times the symptoms are more severe than at other times. It is every day a new search for balance. After twelve years I don’t really know any better, but it is sometimes accompanied by literally falling and getting back up again. After a busy birthday or if I do too much in one day, I sometimes have to relax for a few days. MS makes me sensitive to stimuli. I always have to keep that in mind. MS taught me to live from day to day. To accept the bad days and then be extra kind to myself and to enjoy the little things. Drinking a cup of coffee in the sun, going outside with Ties. I have a good life, also with MS.”

Not between her ears

Before being diagnosed with MS at the age of 24, Carlien had suffered from fatigue, bladder infections, dizziness and balance problems for years. For a long time she thinks it’s between her ears. Until she notices in the shower that her skin is numb, her left leg starts to twitch, she loses her balance more often and after a working day she no longer has the strength to cycle against a small bridge.

Via the GP she ends up at the neurologist for examinations. “I remember very well that he told me the results, took my hands and said: ‘So it’s not between your ears’. That was a real relief for me.” The impact of MS actually only dawns on her later. Where girlfriends enter the phase of working and living together, Carlien’s life suddenly looks very different. Soon after the diagnosis, she is declared completely incapacitated for work.

“I had a hard time with not being able to work anymore. I have now found my way in life. I am happy with my family, like to make it cozy at home, do fun things with friends and enjoy being with family. I exercise once a week under the guidance of a physiotherapist and love being outside.”

Doubts about motherhood

Because of her illness, Carlien has long doubts about motherhood. “I didn’t know if I could take care of a child. I only got the answer to that question once Ties was born. The first year was very difficult, partly due to a violent birth and a revival of MS complaints afterwards, but now things are going well. I’m so glad my husband and I took the plunge after all. I love playing with Ties in the playground and going to the petting zoo or the woods with the cargo bike. If I’m not doing well one day, we watch TV together. I never wanted to miss this.”

Happy

Carlien wants to emphasize that a diagnosis of MS does not have to mean the end of the world. “I also have days when my body does not want to at all and I am angry, sad and frustrated, but despite that I am happy. I hope to be able to enjoy it as healthy as possible for a long time to come.”

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