Living with the sickness

Another stroll to our favorite tree next to home

"Walking with a friend in the dark is better than walking alone in the light.” 
(Helen Keller)

Moody sunset

For now, I was told, treatment is as easy as taking a high dose of prednisone to trigger a reboot of my immune system. The body will recover and my odds are splendid.

But Churg-Strauss kept its grip on me. In 2020, sweating, headaches, tinnitus, and weakness in the legs remained a permanent grievance. The biggest improvement in those days was the regained ability to breathe through my nostrils again! Also the blood count of eosinophils improved, but given the high dose of cortisone, it was yet strangely high.

My immune system was still malfunctioning, despite the attempt to “reboot”. I couldn’t do much. Most of the time I simply sat on the sofa idle. Communicating with people was strenuous. I could not focus my mind. Even the little walk into town was a challenge. On some days I turned back half-way. I enjoyed being surrounded by people in the fresh air. But I clearly sensed that the “lady fox” had transformed into a “snail”.

My favorite destination was a small peaceful shop selling knitting wool. My favorite occupation in those times, when I could gather a little focus, was to crochet. I sat sweating like crazy on the sofa, struggling with counting beyond five. But I produced lovely bags, shawls, and bonnets. What a joy for me! Crochet also means to connect to friends in real life and in social media. 

I did get a lot of support and encouragement from my colleagues of the pharmacy, where I used to work. Oh, I missed my job so much!

For me, the Covid pandemic strangely enough, brought significant advantages: As my dearly beloved husband worked from home, he could always be present and support me with his never-ending patience. My husband did the errands, bought fresh and healthy food on the local markets, baked bread, cooked dinner, did the housekeeping, massaged my hurting feet and head. Throughout my sickness, the two of us had an intimate time, which was an endless source of love and comfort for me.

As often as possible we did short strolls in the beautiful forests nearby. We watched the seasons go by and luckily 2020 had the most wonderful weather you could imagine. I enjoyed (and also needed) the many rests on lonely benches with their nice views on my home valley. Due to my extreme transpiring, I always had to take spare clothing with me. 

My crochet keeps me a purpose in life
Fog in autumn

With the passage of time we attempted to lower the dose of cortisone several times without success. Once below a threshold of 12mg prednisone, symptoms got really bad again. The soles of my feet ached severely and endless attacks of migraine passed by. In summer 2020 we complemented prednisone with azathioprine, which actually accomplished a significant relief of my enduring headaches. But as I was again struggling with infections, another attempt using MTX followed at the end of 2020.

While the Covid pandemic did not have much negative effect on my secluded life, it did cause a significant delay for my medical treatment: Appointments in the hospital were postponed multiple times. The time to respond to my symptoms and switch between the selection of drugs was extensively prolonged.

I also used the time for several additional check-ups on my own, like searching for parasites (as those could also trigger eosinophils) and conducting a bone marrow puncture (to exclude leukemia).

I also consulted a neurologist regarding the headaches and my growing feeling of being demented. But the doctor, like many others, refused to take me seriously. “If you can’t see it on the MRT, there is nothing”. Period. What he did confirm though, was neuropathy in my feet, which is a known symptom of Churg-Strauss.

At the end of 2020 I still kept fighting the disease. My crochet and small walks in the neighborhood kept the threatening shadows at bay. With the help of my husband and my friends love and faith prevailed.

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