‘It’s nice to be able to talk to each other’

She had a busy job in healthcare that involved a lot of responsibility. There was a lot going on at work and in her personal life, but Mariska just got on with it all. In the meantime, her symptoms were piling up: ‘I wasn’t sleeping well, I had headaches, dizziness, muscle pain and I could burst into tears at the drop of a hat,’ she summarises.

It turned out to be a burnout. It took a year to recover and build up from not working at all to working full-time again. Mariska continued to suffer from fatigue. The GP put it down to an after-effect of the burnout and, most likely, stress. But she didn’t agree: ‘I had already tackled almost all of the stress factors.’

One day, she went out for lunch with her mother who noticed a swelling in Mariska’s neck. The swelling turned out to be a symptom of thyroid cancer.

The diagnosis partly came as a relief. ‘I finally knew what was going on. I was told that this type of cancer had a favourable prognosis, so I wasn’t worried. I wanted to get the cancer out of my body as soon as possible, but after that I would be able to pick up where I left off.’

She had surgery and then received thyroid replacement medication. She had to stop taking the medication temporarily in order to have follow-up treatment involving radioactive iodine. ‘It made me feel much more tired than usual. I had muscle pain, joint pain and I put on weight. I felt like an 80-year-old.’ After the iodine therapy, she was allowed to take thyroid replacement medication again, this time on a higher dose in order to keep any remaining thyroid cells at bay.

But Mariska felt tired all the time and her symptoms continued. ‘I was constantly cold. Even if it was 35°C outside, my teeth would be chattering and I’d be sitting with a blanket around me.’

She clung onto the idea that things would improve once her dose of medication could be reduced. But that didn’t happen. ‘I have a nice endocrinologist who suggested all sorts of solutions, but nothing helped.’

A member of a Facebook group for people with thyroid cancer made her aware of ME/CFS. A few months later, Mariska was diagnosed with chronic fatigue syndrome. Her fatigue is different from that of other people after cancer, she says. ‘One of the characteristics of ME/CFS is that physical activity can aggravate the symptoms. It often gives me flu-like symptoms. Everything hurts: my muscles, my joints, my lymph nodes. I suffer from migraines behind my eyes, I have trouble focusing, I have memory problems and I have bowel problems.’

She stresses the fact that she is also constantly tired. ‘It feels more like exhaustion.’ She says that her life has changed a lot as a result: ‘I have had to give up a lot of things.’

She can no longer work, external home help services and her boyfriend do the housework and her social life has been put on the back burner. ‘On a good day, I manage to do some light housework myself.’

Unfortunately, there is no effective cure for ME/CFS yet, Mariska says. ‘But some of the medication I am currently taking may help.’

Mariska says she has benefited a lot from Untire. ‘At the beginning, I used the app every day. I used the Vase of Energy, I read the information on all the topics, such as limits and sleep. I also find the tips and the relaxation section really useful.’

She is an active member of the Untire group on Facebook. ‘My fatigue is not only caused by cancer, and so other cancer patients will have different experiences. But it’s nice to talk to each other, and I enjoy helping other people. Being open and positive in life helps me. It helps to think about what you can do, rather than what you can’t. You also have to learn to cope with the fact that your life has changed. Despite all my limitations, I feel very happy. I try to enjoy life. Fortunately, I’ve never had a day when I’ve thought it’s not worth getting out of bed.’