After a very difficult year, there is finally good news again: I feel much better. And because a lot has accumulated lately, today will be a bit of a long post. With a big thank you to old friends, a blood test, and an amazingly full schedule in front of my window.
Others have to leave the house for variety. At my place, even weddings and farm machinery come by now.
I am feeling much better
In the past two weeks I have made a huge leap forward. This is not just a cautious „Maybe things are a little better today,“ but a change that I can clearly feel. After last year, this means an incredible amount to me.
I very much hope that this improvement will be permanent this time. At the same time, I don’t want to announce that everything has been overcome already after just two good weeks. That is still too clearly implied in this „hopefully“ statement. At the moment, I am happy about what has improved, without immediately wanting to make a prognosis for the next few months based on that.
Better also does not mean healthy. My daily life remains severely restricted. But within these narrow limits, an improvement can make a huge difference. Sometimes, this is manifested precisely in things that would hardly be worth mentioning to others.
For example, on a combine harvester. More on that later.
What great friends I have
First of all, I would like to thank you. To my friends, all the supporters and everyone who thought of me during the difficult past year.
Your messages and photos have been very helpful to me. They have brought a piece of your life to me, while my own daily life was quite limited. Knowing that you haven’t forgotten me was important. Very important.
I would like to mention a few actions in particular: There was a fundraising campaign for me on my own birthday organized. On a day when you could be the center of attention yourself, to be thought of and to invite others to help – that really touched me.
Then came a handwritten letter. Six pages! Just the time and attention that goes into it. Six pages written by someone for me are a gift that cannot be expressed in euros.
And suddenly people started to contact me again, with whom I had not had any contact for many years. From my elementary school days in Berlin – after about 30 years. A friend from skiing after about 20 years. A friend from college after 13 years. And an ex-work colleague after about ten years.
Thirty years! That gives „nothing much has been heard from each other“ a whole different dimension. Apparently, you don’t have to write off a connection too quickly just because there has been a long gap between the two events.
This is not meant to be a competition of grand gestures. Even a short message or a photo can mean a lot to me. You don't have to write six pages or wait until the anniversary of our last encounter. I look forward to hearing from you.
There was a lot going on outside my window.
A combine harvester as a gauge of progress
The field in front of my window has been harvested. For most people, that would be the end of the story. For me, not.
In 2021, when I lived in Nufringen, the noise from the agricultural machinery was a brutal ordeal. „Disturbing“ or „uncomfortable“ hardly describes what I experienced at the time. It felt like torture.
And this time? No problem.
That sounds unremarkable, but for me it’s a huge news. It wasn’t about whether I particularly liked the harvest. What mattered was that I could tolerate it without that torment from back then.
I wouldn’t have thought that a combine harvester would appear in a post about my health progress earlier either.
With trumpets, without trumpets
Next, there was a bridal pickup right outside my window. With drums. No trumpets – so there was still some musical freedom.
Fortunately, things were already getting better for me at that point. So the whole thing was more or less bearable. Not exactly my ideal situation right in front of the bedroom, but I was very glad that I could tolerate the noise somewhat this time.
In any case, my window is developing into a rather versatile venue. Unfortunately, I have little influence over the programming.
The awning made a departure
And then the awning in front of my window also fell off. While I'm checking in here, some of the equipment is being taken away first.
Fortunately, she was Repaired again the very next morning. I am very grateful for that. After harvesting and picking the bride, this additional program point wouldn’t necessarily have been needed.
What else has changed
Also the I updated the website. Among other things, the Description of my health condition Now the current status. For those who would like to read more about my situation, the updated information can be found there.
In addition, there was a change in the care staff. This time, my caregiver comes from Latvia; Otherwise, they were nursing staff from Poland. However, this is not a completely new face: this nursing staff was already with me once. So, here too, we are meeting again, fitting the title of this post.
At the service of science
The research was also visiting me: Dr. med. Susanne Delecluse came to take samples. The contact was made through the LU regional group. There, participants were recruited for a study on ME/CFS after an infection with the Epstein-Barr virus (EBV) I was wanted. I provided blood and saliva samples for that purpose.
The study materials describe the investigation of Herpes virus reactivation in humans after kidney transplantation. Biomarkers are being sought – measurable biological characteristics that could predict a renewed activation of the viruses. In addition, it is being investigated whether certain genetic characteristics influence this reactivation. This therefore also concerns the question of which individual factors play a role in this process.
What particularly interests me about this is the overarching question: Why can infections have such different health consequences in different people? Especially from my perspective as someone with ME/CFS, this is a question to which I would like scientifically-based answers.
My participation is not a treatment; there is no immediate benefit to my own treatment. Nevertheless, I am pleased to be able to contribute with my samples for research. Even from bed.
Source for the described study objective: Study information „Identification of biomarkers for the reactivation of the herpesvirus and associated diseases in kidney transplant recipients“, Version 1 dated 12.06.2025. The ME/CFS reference for participation comes from the request regarding the LU regional group.
Here again. And the view goes forward.
To conclude, there are two songs today.
Westernhagen's „Back here“ It fits my life motto. I’ll get back to you – not with the claim that everything is back to normal, but with the joy that more is possible again.
Westernhagen: „Back here“ (MTV Unplugged) to listen to on YouTube – official audio version with cover art.
And then Oasis with „Don't Look Back in Anger“. For me, today this thought is foremost among them: The focus is on the future. This difficult year will not be forgotten, but I want to look forward and also rejoice at what is now possible again.
Vote and let me know in the comments which of the two songs appeals to you the most. Maybe you can also connect a personal story to it.
But most importantly: Thank you for being there. Keep sending me your messages, your photos, and little glimpses into your daily life. Even if we haven't heard from each other for a long time.
I look forward to seeing you all.
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