“Being there has taken on a whole new meaning for me”
Before she got post-COVID – early 2022 – Sabine Tjon Pian Gi had the energy of ten. She worked more than full-time as a clinical psychologist, studied, exercised intensively, baked cakes and sang and danced with her children. “I literally ran and bounced through life. Now I spend an average of 22 hours a day lying down, most of the time in bed, without music, TV or books and often in semi-darkness. The days that I can make myself lunch and take a shower, I now call a 'good day'.”
No pretentiousness
“The first year and a half I still woke up every day with the idea 'don't be so dramatic, just keep going'. That was always my way of dealing with setbacks. In that phase I got a lot out of C-support. Marijke, my aftercare advisor did that very well. She took my complaints a lot more seriously than I did at first. That confirmation, that it really wasn't pretentious, meant a lot to me. What I also really liked is that C-support clearly had more knowledge than the rest of the care. At that time I thought my physiotherapist still thought it was all in my head and the company doctor encouraged me to find my limits. C-support advised me to take it easy and listen to my body.”
To choose consciously
In the first few years, Sabine tried all sorts of treatments to reduce her symptoms. “I’ve had just about everything in the alternative circuit, including fifty sessions with hyperbaric oxygen. But since then, it’s only gotten worse, in my case.” She also suffers from POTS, but it’s mainly a serious form of PEM that determines her life. “I call it Post-life Even Morsdood,” she says with a laugh. “Yesterday, for example, I had a friend over for half an hour, so I have to recover from that for an entire afternoon. But because I think it’s worth it, I accept that. That’s how it works for me now: very consciously choosing what I want to spend my limited energy on.”
Irritable
She is also extremely sensitive to visual stimuli, a complaint that she believes often remains somewhat underexposed. “From my background, I know that this is because your information processing is disrupted. Everything comes in very fragmented and you are no longer able to integrate that information. For example, when I walk on the sidewalk, I see all the seams, all the tiles separately. That makes you crazy and dead tired. And when I am really overstimulated, I can really lose my temper about the smallest things. Then I feel super guilty and I no longer recognize myself. Normally I am very gentle.”
You're not alone
According to Sabine, post-COVID means more than not being able to do many things anymore. “You actually lose your entire identity. And of course you are not alone. As a couple and family, you also have to adjust your future perspective. For example, my husband and I often went cycling together. We have lost that whole sporty vibe. And the dream trip that we were going to do again with the children is no longer an option. It really took a while before I could be satisfied with that very small life that I have now. 'Being there' has taken on a completely different meaning for me. I can no longer go to hockey, but I can now have tea with the children when they come home from school. And I can still comfort them when they are sad. I am still here. Despite all the limitations, I enjoy life and I am happy, partly thanks to the many lovely people around me.”
Freedom
Sabine has had a wheelchair for some time now. “With wide tires, it had to be a bit tough. To be honest, I haven’t used it that often, because going outside gives me a lot of stimuli. But the fact that it’s possible gives me freedom in my mind. And we can do more things together again. We recently went to the forest with the family. We have a lot of fun together. I do notice that it’s often shocking for those around me. Of course, people don’t see all that time that I’m lying in bed. The wheelchair makes them face the facts. Only then do they often realize how serious the impact is.”
Poetry as an outlet
Sabine has found a beautiful way to process it all. “Initially I wanted to write a book, but of course that didn't work out. Then I started writing poetry, initially purely for myself. I often do that after a PEM attack, when I'm a bit out of the slump. That's how I write down the anger, the sadness and the pain. By giving it a place in that way, I manage to be cheerful again for the rest of the day. My poems are sometimes quite intense, because I really have to name the pain of the loss for myself in order to be able to deal with it. But that's exactly why people see and feel what post-COVID does to you at its deepest level.”
Learning to involve others
This is what happened to her friends when she had the poems read. They were touched by it and thought Sabine should do something with it. They wanted to help. “I now write with a pen and speak the poem when I am satisfied. Then a good friend types it out and another takes care of the layout, after which I post the poem on my Instagram (#closertolongcovid) On LinkedIn. That is also something I had to learn: asking for help. I now realize that I can't do anything without the people around me. The great thing is that it also makes them feel good. The fact that they can do something for you also makes them feel less powerless. And it creates a connection. The bond with the people around me has only become closer.”
Moment of happiness – poem
