Marielle has struggled with severe fatigue since she was a teenager. At a young age she was diagnosed with CFS, chronic fatigue syndrome.
Always tired
Mariëlle (38): “The first complaints of fatigue presented themselves when I was 12. I was tired throughout high school. I suffered from muscle pain and a strange, kind of lethargic feeling in my legs. The doctor was puzzled. Every school year I was tested for mononucleosis, but nothing ever came of it. My school years were characterized by stress, flu and high fever. Especially after busy times, for example after my exams, I needed a long time to recover. At Christmas I was sick for a week as standard.
At the end of the school year I was running out of steam. It’s very difficult. You are a teenager and you want to do fun things, exercise and go out, but you can hardly do anything. And if you make it late one night, you’ll have to pay for it afterwards.
It was particularly frustrating that I couldn’t just do everything my peers were doing. For example, I remember when we went on a school camp with the class. My father had to take me by car, because cycling there was too much of an effort for me. That weekend turned out to be a complete disaster. It took one night and I had to be picked up again. I just couldn’t take it anymore.
After obtaining my MAVO diploma, I did MDGO-VZ, an MBO course in healthcare. In the meantime I had found a way to deal with my complaints. I started to organize my life in such a way that I could at least continue to do normal daily things. For me that meant going to school, eating and sleeping, and doing as little as possible. But things went wrong during my HBO-VM education, which I subsequently followed. I interned in various departments. That was a real battle of attrition for me and I had to stop my training in my third year. That was such a big downer.
Becoming a nurse was my big dream. That was what I loved to do most. I saw everything collapse like a house of cards and end up in a big black hole. I was severely depressed for a year then; a combination of being overtired and having a very hard time mentally.
CFS
When I was twenty-six, a suspicion clinic came to our hospital. My doctor was skeptical about it, thought it was mainly very commercial, but I decided to go there anyway. My blood had already been tested many times and all kinds of diseases had already been ruled out, but I really hoped that something could still be found at the fatigue clinic. I was examined there and x-rayed with electrodes. It turned out that my muscle tension was extremely high, one of the characteristics of CFS. It was a miracle that I was still functioning at all, the doctors said.
I had been diagnosed with CFS when I was 20, but then I was told that there was nothing that could be done about the fatigue. Now it was examined whether there were still gains to be made, including by administering vitamins in high doses. This cost me a lot of money and yielded me little. Ultimately it came down to the fact that seeking balance in my life was the most important thing. And it still is. As long as I take it easy, I’m fine. This means that my weeks and the rest points within them are all planned. A morning of shopping is followed by an afternoon with a book on the couch. Sometimes it makes you crazy. Then you just want to think about it less and go out spontaneously more often, just like everyone else. Unfortunately that is not possible for me.
Painful joints
Because you cannot see from the outside that I am ill, and because CFS is quite a vague illness, the people around me have not always been understanding. I really had to learn to deal with that. You are not always appreciated if you cancel birthdays, never stay late and stay away from parties. For example, we have a seasonal spot at a campsite. I can have a drink there with friends or neighbors one evening, but not two evenings in a row. Sometimes I get a text from friends. ‘Are you coming for a drink?’ Oh no! I think then. Just reading it makes me tired.
After being diagnosed with CFS, I was also diagnosed with fibromyalgia a few years later. According to the doctors, this was not surprising, because CFS and fibromyalgia often go hand in hand. At least I now knew where those painful joints came from. I don’t take any medications, there are none, but I have drastically changed my diet. I no longer cook with packets and bags and ensure that I consume almost no sugar, which keeps my sugar levels stable. That makes a huge difference. I also tried homeopathic drops. Outrageously expensive, but they didn’t help. Being alert to my diet and rest helps the best.
Not cozy
I have a husband and three children. I knew in advance that it would be physically difficult for me during my pregnancies. But the desire to have children was so great that I had the extra complaintwas willing to do for it. Our third as a child, I became completely burned out, resulting in burnout. I weighed only fifty kilos. The GP has ensured that I received home care. Someone who came into our house, the elders to school and all kinds of houseworkdid odd jobs, which made me… could relax again. In the weekends my husband took it about. He himself has rheumatism, so we accept each other’s limitations and know how important it is to listen to your body and set limits.
I now work 15 hours a week in healthcare. That goes exactly right. Working an extra shift is not an option. Sometimes I do it, but it rarely turns out well. If I work more or leave more often, I become less cozy at home and I can have less. That’s not worth it to me. Our children already have to do quite a lot themselves and help with small household chores, for example. I can’t go up and down the stairs too many times a day. They don’t know any better, but sometimes I find it difficult. Especially that I have to deny them certain things. A four-day evening walk with my children is not an option.
All kinds of extracurricular activities are organized at primary school. I simply don’t have the energy to always take my children there and pick them up again. They can’t participate unless they can ride with someone. That obvious thing of ‘Oh, we’ll get in the car and go’, that doesn’t exist in our family. My son plays football, but I am rarely on the sidelines. I leave that to my husband. The matches are often early in the morning, but that’s when I’m at my worst. I have start-up problems and have to gather energy every morning to face the new day. I participate on weekday mornings, but when everyone is out the door, I plop down on the couch to recover from the morning rush. I always go to bed early too. My children watch television on Fridays and then I go to sleep. But I’m not complaining. There are people with CFS who cannot get out of bed, who absolutely cannot live a normal life. Fortunately, I can do that, albeit with the necessary adjustments.
Recognition
The fact that I cannot work at a higher level in nursing and not be able to do all the things I want to do every day is a grieving process for me. It is saying goodbye to the wishes and ideals I had as a young girl. With a family everything comes into a different perspective. Fortunately, work is becoming less important.
In March 2018, CFS was recognized as a condition. The Health Council had previously issued a recommendation written in the House of Representatives, stating that it is a serious chronic disease that substantially limits functioning and quality of life. Patient associations have been fighting for this for years. Because no cause for the fatigue complaints has ever been found, CFS patients were often told that they were acting out. I like that there is now recognition of the disease. For me, living with CFS is mainly a matter of clearly sensing and indicating your limits, and looking at what is still possible and possible.”
This article previously appeared in Marie Claire November 2018.
Text: Natasja Bijl | Image: Adobe Stock
