The Impact of Long COVID

Sandra van den Heuvel, 46 years old, lives with Chris and their daughters Mees (14) and Fee (13) in Oss.

“Before April 8, 2021, I was an active, sporty, social woman who lived healthily and enjoyed family, friends, sports, vacations, walking in nature and, not to forget, a good dose of social conviviality. I worked an average of more than 4 days a week as a (team) coach and HBO teacher. The balance and combination between private and work, with fantastic colleagues and great challenging assignments, was exactly what I wanted would like to. After April 8, 2021, there will be nothing left of this life..” This is how Sandra's book begins: 'Long Covid? How I experience it.' (available everywhere).

It feels so different

15 months ago now, the day started with a sick partner who tested positive for corona. At that time, Sandra could not have foreseen that that day would be etched in her memory so much. Two days later she became ill, after two weeks of being seriously ill she thought she had seen the worst. But nothing could be further from the truth. She thought she was getting better, but something seemed wrong. It felt so different. Due to the lack of focus and concentration in addition to the physical complaints such as fatigue, headache, shortness of breath and loss of voice, Sandra reported sick and expected to be back after a week or two. In the end, everything turned out differently. “In the beginning I could still do a few things,” says Sandra. “Everything slowly, because I was tired and short of breath, but instead of improving I gradually got worse. Walking 400 meters is the maximum for me, talking is also very tiring. I was so stuck in my own limitations and could not cycle, walk or exercise to clear my head that I wanted to put my thoughts in writing. Only a few lines each time.”

Satisfaction

Sandra missed the satisfaction of being fully involved in the family or in work and tried to find a purpose again. At one point she had so much material that, if she were better, she would like to use it to help other people. However, she gradually realized that getting better could take a very long time. She really couldn't put it together herself. Thinking in solutions, she wondered: 'but what is possible then?'. Who could help her? She asked her colleague Marjowella Stael to put it out in her network, but she said: 'I'm going to do this myself. I just have to do this for you.' "The notes were not readable and not editable for Marjowella, so I started dictating them into Word. 5 minutes in the morning and 5 minutes again in the evening. That way it went pretty quickly. It became a booklet, and the question was, where do we stop, when is this process over? When I found out that there was actually no book of experiences yet, I wanted to publish it quickly to help other people with long-term COVID complaints. That's why 'the cut' is set at 10 months. And who knows, there might be a sequel."

The Impact of Long COVID

Sandra is rightly proud of her book, it gave her the insight that with help, something is always possible despite her own impossibilities. She has always experienced a lot of understanding in her immediate environment. Especially Sandra's immediate environment, even people who were really close, thought they knew what her world looked like. And they were, after reading the book, incredibly touched. What Sandra's life really looks like instead of the thoughts about it. She had not expected that. The recognition of people who are Long COVID patients themselves, but also the amazement and emotion of people who do not have it themselves. Long COVID is so serious that nothing is self-evident anymore. It is really unimaginable that wiping a dishcloth over the counter is already too much. "At the worst moment, I actually could not even hold my own tea mug," says Sandra. "That made me feel short of breath. It was just too heavy. People often do not realize that on a bad day, cycling through the city or nature for 15 minutes on an electric bike is the only thing I do that day. When people see you, they think you're okay. But you're not."

C-support

Sandra has been registered with C-support since August 2021. “At the moment, a few months after the infection, that I actually realized that things were getting worse and that recovery was not yet in the cards, I found information on the C-support website that was really useful to me. I wanted to register for the moment that I would really need help. At that moment, that was not immediately the case, because my care had already been fully initiated and I also experienced support from my employer. At C-support, I found information about what Long COVID entails and how to deal with it. Also useful webinars and research with a report on my personal situation. And knowing that help is available for the moment that it is needed, for example for advice on treatment, work and, if it comes to that, WIA application…”

Wish

The diagnosis of Long COVID has forced Sandra to lead a completely different life. In her book you can read how she experiences this. Her ultimate dream is to find a solution for herself and the large growing group of people who are severely limited by the virus. She would love to see a different system in the Netherlands, much more effective and efficient. Where central money is released so that all research in the Netherlands, but also worldwide, no longer consists of separate fragments, but is linked together so that it forms a whole. This book is a link for her to keep Long COVID in the spotlight until then. With perhaps a sequel one day. In the hope that the much-desired solution will actually come.