When I caught COVID in March 2020, it came as a complete shock. I simply hadn’t considered that I might get it. I was very sporty and went spinning several times a week. The news mainly focused on older people, people who were overweight or people who already had health problems. So I thought: how could this happen to me? I was very ill for two weeks and extremely short of breath. After that, I never really recovered. I remained exhausted, had lost all my muscle strength and sometimes even fell asleep while eating.
It went on like that for at least a year and a half. After that, I slowly began to feel a little better, but I never fully returned to my former self. I could no longer exercise the way I used to. Nevertheless, I found a new balance. Until I caught COVID for the second time, in 2023. I immediately knew things were going wrong again. This time, the symptoms were different. I was less short of breath but struggled much more with brain fog. I couldn’t find the right words, could no longer speak in normal sentences, and developed severe muscle and nerve pain. Sensory overload made me feel ill.
Fortunately, more help was available by then than at the beginning. I tried several types of therapy, which did help. Over time, the sensory overload also became less severe. But when I’m tired, my head still feels as though it’s too full. I simply can’t think clearly any more. The fatigue remains the hardest part. It comes and goes. Sometimes I feel better for a week; at other times, I suddenly find myself in a slump that lasts two or three weeks. It always catches me off guard.
I still try to keep working, for a few hours a day. It helps me mentally. Fortunately, I have a lovely workplace where people are very understanding. I can rest whenever I need to, and no one puts pressure on me. That makes a huge difference. At the same time, post-COVID has made my world smaller. I used to have a rich social life, was always active and spent a lot of time with other people. Now I constantly have to plan, cancel and make choices. That isn’t always easy for others to understand, especially when they hear that I can work but don’t have the energy to meet someone for a coffee. It has also cost me some friendships, and that hurts.
Perhaps what I find hardest of all is not knowing how long this will last. I don’t know whether I will ever fully recover. There is no clear milestone to work towards. At the same time, I can see that I’m making progress, step by step. I can manage stairs better again, and I’m cautiously working on rebuilding my muscle strength at the gym. These are small glimmers of hope that mean a great deal. They give me something to hold on to.
I made a conscious decision to participate in the NMCB study. Not because I expect it to directly improve my own health, but because this research is necessary. I hope it will provide greater insight into post-COVID, its symptoms and what happens in the body. As part of the study, I also underwent the NASA Lean Test. For this test, you first lie down and then stand leaning against a wall for ten minutes while your heart rate, blood pressure and symptoms are monitored to see how your body responds to being upright. I found the test very confronting, and I continued to experience its effects for a long time afterwards.
Nevertheless, I’m glad I took part. I hope that, ultimately, a treatment will become available that is safe, affordable and accessible to everyone. As for myself, my main hope is that I can continue to make progress, one step at a time.”
