Control!

“Have you lost control? “You’re too thin!” my mom wasn’t the only one who told me. I have never consciously starved myself. But I forgot to eat or lost my appetite due to stress. How much it drains you, how much it determines your everyday life, is often not visible to the outside world. I've already mentioned that I'm good at dubbing. After a day at work, I pick my son up from daycare and do the household chores. That's draining, it takes energy for everyone. But especially if you have pain, your muscles are weak or it takes effort to keep your fine motor skills under control. But I have to function. Stay in control.

And then there are these moments when I lie on the bed and cry in pain. Then every single joint hurts and there are a lot of joints. Then I let go of control for a moment.

Then there are those moments, and there are a lot of them a day, when I look at my fingers (like a tic!) or take off my socks in a panic when my toe starts to pinch. I look at my skin very carefully and listen to myself. But not too much, because then I would notice again that my fingertips are constantly tingling, that my hip hurts, that my cheeks are squeezing, that some cells in my body are causing damage. Uncontrolled.

Then there are those moments when I would like to give up everything and stop fighting this disease. Let her endure me. Give up control. Because then I no longer have to go to appointments, talk to doctors, or get pierced. No medications in my body and most importantly: no decisions to make. I don't want to deal with it at all anymore. No more having to google to have even the slightest sense of control. Control. I miss that. And I can't stand that. I've never been able to.

I am the type of patient who is particularly stressful. I don't like it when I know more about my illness than the person I'm talking to. I then tend to think of the person as incompetent. Or… not competent enough anyway. I have already canceled doctor's appointments in the middle of the treatment because of this. As a joke, I've often said, "I'll just study medicine and treat myself." But that's not the solution either.

Some are now involved in diagnosis and treatment. This makes me feel completely selfish, taking what I need from everyone. What I feel is competent enough to filter and use for myself.

Another person will join this group next week: a professor at the University of Ulm at the Center for Experimental Tumor Research. He is a specialist when it comes to my illness. And we have a phone date.