“To be, or not to be, that is the question.”
Starting May 2021, a monthly routine started for me as a patient in the Mandara study funded by AstraZeneca. The study was a randomized and double blind research to compare the efficiency and safety of benralizumab versus mepolizumab. Each month I became a monoclonal antibody administered. Which one was not disclosed to me. But as it was assured that there was no placebo used, I did not really care.
First of all, I recovered psychologically: Finally, I was taken seriously, received promising treatment, and I gained trust again. The team in the hospital was extremely supportive and gave me a lot of emotional comfort. I found a perspective for going on with life again.
Second, supervised by the doctors, I was able to slowly reduce the amount of prednisone. Starting with 20mg, I was down to 3mg 1 ½ years later. Over time, the side-effects of long-term use slowly disappeared. I regained my body.
Third, the symptoms of Churg-Strauss were kept at bay. I remained weak and fragile, everything felt strenuous. Slowly, I gained strength and could participate more in life. There were on average 2 hours each day, in which I was able to do something for real. It helped a lot that I was granted a temporary pension to support my recovery. I could go to town again, meet friends, participate in conversations, and watch a movie here and there. Finally I resumed Qi Gong. On good days, I even started sewing in addition to my crochet. Over time I could walk in the woods for up to 10 km, despite my aching feet.
We bought a Volkswagen camper to expand the range of my possibilities. The built-in heating made it a cozy mobile home, in which I felt safe and warm. Cautiously, my husband and I could start to explore the world again. For example, we were able to drive for a few weeks to the french Atlantic coast. The clean sea air was extremely beneficial and I could enjoy a wonderful time.
Our camper also supported the many, many visits to hospitals and doctors: While I was in the consultation, my husband joined his video meetings from our great mobile home office in the parking lot. Power supply and mobile Internet added to the practical use of our camper.
One beloved hobby became impossible: I could not spend time in the mountains any more. Is the altitude, variation of temperature, or the frequently changing weather and barometric pressure? I do not know. But several attempts to drive towards fresh mountain air failed miserably and I fled back into the flat country with a terrible migraine.
But regardless of what I did during the year of 2021 and 2022: I always had to be careful not to overstrain myself: If I longed for too much, I had to pay the price in the days to follow.
And yes, of course, there were also those really bad days, which fiercely reminded me of the sickness in me: strong headaches and migraine, tinnitus, painful feet, exhaustion, weariness. Days, on which I couldn’t really get up from my sofa. Days, when time just passed by without living my life.
The most dreadful pain in those times were the nightmares of the past, that merciless shadow of the university clinic, which still haunted my nights. I could hardly sleep 4 hours in a row, tossed and turned in my bed, bemoaning my fate. At one point a psychologist started to help me addressing trauma and insomnia.