Tag Archives: neurodermitis

1 Year, 1000 cold coffees…

14 Apr

…and no change in sight.

A little over a year ago, I gave birth to our son. It was just five days after the first Covid-19 induced lock-down. We were lucky, that his dad could still be with us in the delivery room. Two days later this would not have been possible anymore. The days after I was not allowed any visitors at the hospital. Like Rapunzel, I would instead wave his dad from the window of my shared room and throw my personal documents down for him to catch only so he could order our son’s birth certificate – one of several surreal moments. Public transport felt like a haunted train, but it was convenient, when heading home with the baby. Little did we know then and after…

For the first ten months I was more or less caught in baby wonderland and parent leave was my official license for doing so. Not, that there would have been alternatives anyway. It was a given. These first ten months could be summed up well under the headline “Vollgekotzt und angepisst”. Every parent knows that.

The only difference might have been that our son inherited my neurodermitis. After all, we share this burden with about 20-25% of all parents and I have been living with it for thirty-seven years. We deal with it. Well, mainly it is me handling it. It requires some extra effort and some extra discipline and cleanliness. It may let a mother like me appear as a clean freak and already earned me the title of “nazi mother”. In turn, I lack discipline elsewhere. ¯\_(ツ)_/¯

In case anyone effected cares to read this, here is my way of handling neurodermitis: short daily showers and lotions are our ritual for avoiding exacerbation. Employing a very low dosed cortisone creme on inflamed skin prevents larger outbreaks, which would demand higher dosed cortisone therapy. Makes sense, no? Yet it feels like committing a crime. And just mention the trigger word cortisone…

Have you tried calendula? Or wool wax? Or black cummin? Oh, I thought the baby wool was okay for babies. Yes and no, thank you, so kind of you, but sorry no…

My experience tells a different story: while we were aware of the possibility that our son may have inherited my neurodermitis, we initially neglected it, even though the midwife remarked already during his first weeks that he had a “sensitive skin”. I tried cotton, silk and wool clothing, we bathed him 1-2 times a week and used oil and lotion available from the grocery store. After about four months and another vaccination period, he suffered a first and a second neurodermitis burst in the summer 2020. In follow I had to observe a rather intense care plan. I washed all clothing and bed sheets at 60°C. I applied a prescribed tincture for disinfection and low-dose cortisone creme on all effected skin areas (his entire chest and belly, legs, arms and throat). I also tried the suggested black tea compresses, but soon gave up on that, since he removed them instantly and only used the opportunity to scratch himself. I also sorted out all wool and silk clothing and switched to cotton only. No further experiments. It took about two weeks until his skin got back to ‘normal’. It was a nightmare and I was at the end of my rope, knowing full well that there are yet much worse degrees of severity.

Anyway, back to our now daily routine. Since then, daily showers and lotions are my way for keeping a controlled balance between protecting the skin from noxa and pathogens as well preventing it from drying out and maintaining a basic protective layer. As a result our skin is looking quite normal (apart from my hands, which are exposed to too much soap and water, because I have to clean everything by myself). This way I am frequently met with wonder when mentioning that both me and my son have neurodermitis.

Unfortunately I still encounter people, who are misinformed about this disease, either brushing it off as a fantasy or mistaking any skin rush for it. To clarify, neurodermitis is a genetically determined change in the anatomy of the skin. Neurodermitis skin is irregularly structured, literally thinner and hence more permeable for any noxa and pathogens than the average human skin. Allergies may develop from antigens permeating wound skin areas and reaching the blood system, thus triggering an immune response, when otherwise they would be ignored. This cannot be undone by attempts of ‘hardening oneself’, as some people still like to infer. To the contrary.

The best way of dealing with it, is to maintain as much normality as possible and give it not more attention than necessary. This has been my strategy since childhood and it works most of the time, as long as I can maintain the daily routines and avoid triggers. It is also the recommended strategy for handling neurodermitis. The itches are best encountered with distraction.

The first ten months went by in a second, as I was all busy with the baby, staying at home 24/7, no visits, not meeting anyone with one single exception. I was thinking about travelling, but Covid-19 and personal health issues soon put limits to my travelling dreams. Eventually Christmas came and another lock-down. My parents had still not seen their grandson yet. But also my parents were caught up in a divorce. So, in a way I was glad to be far far away from all this.

Else, the entire Covid-19 topic had effect our lives only a few times, namely when issuing the birth certificate and when receiving joint custody.

In January 2021 my parent leave ended. From one day to another my life was supposed to change. Getting back to work – what sounds like a wonderful promise of fully embracing my artist entrepreneur life again, currently looks like this: it is April and I am still at home with our son, who has been sick on off for over three weeks. Since January he effectively spent around four weeks at the day care – that is four weeks out of fourteen. My average work time amounts to ten hours a week – ten hours out of supposed forty. And that is if I am lucky.

Frustration is kicking in most certainly. I had romantic plans for a little Walpurgisnacht ritual, seeing that I have not been out at night for over a year. But our government just now happens to decide on a night-time curfew for the rest of the month. Well timed, Saturn, you son of a bitch.

About an hour ago I put the baby to bed for a second nap. This way I am able to type this off my chest, well knowing, that he is currently sleeping a little too much. The fever is gone, he is doing fine, still needs to recover though.

About an hour ago I also made myself a coffee and actually drank it. That is one out of perceived one-thousand coffees not turned cold. 🎉

Well, it is looking friendly outside. Time to move…