Lisa Bloem was first infected with corona in March 2020 and suffered long-term complaints. The first few years post-COVID had an erratic course for her, which is recognizable for many patients. Also the unfortunately so familiar picture: therapists who don't know what to do with her, lack of understanding from doctors and the UWV, friends and acquaintances who just can't understand what post-COVID does to you. "And I understand that too. You can't explain to anyone that after ten minutes of video calling you can sometimes be in bed for three days."
See what is possible
Lisa quickly discovers that traditional therapies and reintegration programs do not work for her. “They are based on a linear progression; one step further each time, a few minutes more practice, a few hours more work. But post-COVID it doesn't work that way. I have learned to listen very carefully to my body and to see what is possible at any given moment. That can differ per day, per hour, even per quarter. I always keep looking at what is possible.”
Less trouble with MCAS
Fortunately, things have been going a lot better for her in the past year. Lisa has mainly noticed progress since she started a low-histamine diet at the end of 2023. “I now suffer much less from the symptoms associated with MCAS (mast cell activation syndrome, ed.). In addition, a harmful mold was discovered in my house. That may have played a role, because since I have been living here, on my boat, I have much more energy. I could barely climb the stairs and now I even do my shopping on foot again. I get on the bus and train again and I sleep again! That has also been a problem for years.”
Getting used to progress
According to Lisa, what also helps is that she is now fully disabled. “That saves a lot of stress. Now I have the freedom to work on my recovery in my own way. That is an ongoing process. For example, I really have to get used to the fact that things are going better again. Eventually, you start living completely from the limitation, unconsciously. That constant alertness puts your entire nervous system on edge. I am trying to let go of that now by seeing every day more as a new adventure. Then it sometimes turns out that I can actually do something again, but sometimes I have to adjust my plans on the fly. That is how it is.”
Listening ear with expertise
“On my path with post-COVID, C-support has helped me a lot. Always a listening ear with expertise. That started with the extensive intake. Finally the recognition: you have post-COVID. But also as a source of information. I learned that the setback I experienced after physiotherapy had a name: PEM. And that I would probably benefit more from occupational therapy. When I had questions about my benefits and the required procedure at the UWV, I even contacted an employment lawyer from C-support. I also recently asked my aftercare advisor for advice. And if there is anything else, I know where to go.”
To be truly seen
Finally, she has one thing to say, in the interest of other patients. “Since corona, video calling has been very quickly adopted, because it is supposedly less stressful. Also by insurance doctors and occupational experts. Now I personally find that very tiring, but more importantly, they don't get a good picture of you as a patient. On the screen, they don't see how you come in and move and what the journey does to you. I think that physical effort is really worth it to make it clear what post-COVID does to you.”
This story is based on the personal experiences and perceptions of the patient in question. We at C-support like to share this because we know how patients can inspire each other and because professionals also can learn from those personal experiences. The content of this story can no advice is taken from C-support.
