Marielle has been struggling with severe fatigue since puberty. At a young age she was diagnosed with CFS, chronic fatigue syndrome.
Always tired
Mariëlle (38): “When I was twelve, the first symptoms of fatigue presented themselves. I was tired all through high school. I suffered from muscle pain and a strange, kind of sluggish feeling in my legs. The doctor was puzzled. Every school year I was tested for mononucleosis once, but nothing came up. My school years were marked by stress, flu and high fever. Especially after busy times, for example after my exams, I needed a long time to recover. I was sick for a week at Christmas.
At the end of the school year I was walking on my gums. It’s very difficult. You are an adolescent and you want to do fun things, play sports and go out, but you can hardly do anything. And if you make it late one night, you have to pay for it afterwards.
Particularly frustrating was that I couldn’t just do everything my peers were doing. For example, I remember when we went to school camp with the class. My father had to take me by car, because cycling there was already too much of an effort for me. That weekend was 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 care. In the meantime I had found a way to deal with my complaints. I started to arrange my life in such a way that I could at least continue to do normal daily things. For me that was going to school, eating and sleeping, and also as little as possible. But during my HBO-VM training, which I followed afterwards, things went wrong. I did internships in different departments. That was a true exhaustion for me and I had to stop my education in my third year. That was such a heavy 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 ended up in a big black hole. I was then severely depressed for a year; a combination of exhaustion and being mentally very heavy.
CVS
When I was twenty-six, a suspicion clinic came to our hospital. My doctor was skeptical about it, thought it was very commercial, but I decided to go anyway. My blood had been tested many times and all kinds of diseases had already been ruled out, but I very much 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 tone was extremely high, one of the hallmarks of CFS. It was a miracle that I was functioning at all, the doctors said.
I had been diagnosed with CFS at the age of 20, but I had been told then that there was nothing I could do about the fatigue. Now it was examined whether there was still profit to be made, for example by administering vitamins in high doses. This cost me tons of money and it didn’t yield me much. In the end it came down to the fact that the search for balance in my life was the most important thing. And it still is. As long as I take it easy, I’m fine. That means my weeks and the rest points in them are all planned. A morning of shopping is followed by an afternoon with a book on the couch. Sometimes it is to become frantic. 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 can’t see from the outside that I’m sick, and because CFS is quite a vague disease, people around me have not always been very understanding. I really had to learn to deal with that. You don’t always get thanked for canceling birthdays, never staying late, and staying away from parties. For example, we have a seasonal pitch on a campsite. I can have a drink there with friends or neighbors for one night, but not two nights in a row. Sometimes I get a message from friends. ‘Are you coming for a drink?’ Oh no! I think then. Reading it already 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 medicines, there are none, but I have drastically changed my diet. I no longer cook with packages and bags and make sure that I hardly consume any sugar, so that my sugar level remains stable. That hurts enormously. In addition, I have tried homeopathic drops. Outrageously expensive, but they didn’t help. Being alert to my diet and rest help the best.
Not cozy
I have a husband and three children. I knew in advance that I would have a hard time physically during my pregnancies. But the desire to have children was so great that I had the extra complaints about it. With our third child I became completely burnt out, with a burnout as a result. I only weighed fifty kilos. The doctor arranged for me to receive home care. Someone who came into our house, took the elders to school and did all kinds of household chores, so that I could relax again. My husband took over on the weekends. He has rheumatism himself, so we accept each other’s limitations and know how important it is to listen to your body and set boundaries.
I now work 15 hours a week in healthcare. That’s exactly right. Running an extra shift once is not an option. Sometimes I do, but it rarely works out well. If I work more or go away 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. An evening four-day walk with my children is not possible.
All kinds of extracurricular activities are organized at the primary school. I simply don’t have the energy to take my kids there and pick them up again. They can’t participate in it unless they can ride with someone. That self-evidence of ‘Oh, let’s get in the car and go’, is not there with our family. My son plays soccer, but I’m rarely on the line. I leave that to my husband. The games are often early in the morning, but that’s when I’m at my worst. I have startup problems and have to gather energy every morning to face that new day. I do participate on weekday mornings, but when everyone has left the house, I plop down on the couch to recover from the morning rush hour. I always go to bed early too. My children watch television on Fridays and then I go to sleep. But I’m not complaining, mind you. There are people with CFS who can’t get out of bed, who can’t lead a normal life at all. Fortunately, I can do that, albeit with the necessary adjustments.
Recognition
Not being able to work at a higher level in nursing and not being able to do all the things I would like to do every day is a grieving process for me. It is saying goodbye to wishes and ideals that 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. Prior to this, the Health Council had written an advisory report to 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 a cause for the fatigue complaints has never been found until now, CFS patients were often told that they were acting up. I am glad that the recognition of the disease is now there. For me, living with CFS is mainly a matter of clearly feeling and indicating your limits, and looking at what is still possible and possible.”
This article originally appeared in Marie Claire November 2018.
Text: Natasja Bijl | Image: Molnar Balint (Unsplash)
2023-07-23 11:15:40
#confidence #Ive #dead #tired #twelve
