“My life with Mr. Long”: diary of a patient – part 4

“My life with Mr. Long”: diary of a patient – part 4

Living with Long COVID – what does it mean exactly? In her diary, Annette Scholer writes about wandering pain, messed up plans and mindfulness.

Under the title “My life with Mr. Long”, Altea publishes a series of entries from Annette Scholer's Long COVID diary. Annette Scholer metaphorically describes her disease as “Mr. Long”, with whom she now has to live. Already released: Part 1, Part 2, Part 3

“Mr. Long is once again asking me to write about him. Unfortunately, he really likes being the center of attention, and this has been happening more frequently recently. Previously, he’d turn up really intensively maybe twice a week, meaning that I’d need to take an entire rest day to recover. Now, almost every day is a surprise, and I don’t like surprises. I’d love to know what’s going on and what I can do, but he just says 'you’ve gotta be joking!'.

Mr. Long has been literally getting on my nerves for a while now. He usually makes himself at home near my spine, and he really knows how to push my pain buttons. Recently he’s been making even more demands on my body, and has been making my entire back burn in pain. After he got bored of hanging out in the area between my lower back and ribcage, he made a beeline for my chest, right up to just below my neck. And he’s not holding back.

I have to take painkillers to be able to tolerate the pain. When I was taking cortisone, things improved quickly. I took this course of treatment for almost two weeks. After the two weeks, I wanted to stop taking the cortisone since I was doing better. But Mr. Long took revenge. He doesn’t miss a thing... So with cortisone, I’ve been able to gradually reduce my pain killers again.”

“I take bets as to where the pain will turn up next.”

“I’ve got a new business idea. I’m going to set up a betting shop where people can place bets on where the pain will turn up next. Will he spread himself over my entire right leg tomorrow, or will he find it funny to return to my back? He also seems to like my face. He knows all of my body’s weaknesses inside and out.

One thing that’s new is that the left half of my face now has a mind of its own. Depending on the exertion, whether physical or mental, Mr. Long will take hold of my face and make me look old.

I’ve already wondered whether to get a job as Frankenstein on the ghost train, seeing as one of my facial muscles sometimes contracts and swells, including my eye. That’s the precursor to exhaustion. It’s when I know I need to rest.”

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“I’m a perfectionist and I like everything to be clean, tidy and in its place. Discipline and a perfectly timed schedule used to be key pillars of my life. It was very rare that I’d be late or have to cancel an appointment. As a single mom, you need to be a well functioning person who has everything under control; everything planned out and organized right down to the smallest detail.

So deviating from a schedule really stresses me out and throws me off balance. And then along comes Mr. Long to throw my whole well-planned life into disarray. Sometimes he turns a blind eye and allows me to go on a longer trip with my family. But I can only do this with a second driver. When it all gets a bit much for Mr. Long, he gives me a sign that it’s time to hand over the keys. And I’m happy to obey.”

“I feel like a pregnant woman – worn out and with no control over my own body.”

“Mr. Long and I have to deal with each other a lot. He demands more and more compromises from me. Once I’m back home, my recovery phase can be veeery long. Then I go right back to zero, and I lie on my back feeling like a dead fly.

But despite everything, I don’t feel unwell – more like a pregnant woman, worn out and with no control over my own body. With pregnant women, it’s hormones that are out of control. With me, it’s Mr. Long.”

“Mr. Long is fascinating, too: I’ve never needed to get to know myself like this before.”

“Mindfulness has become really important: weighing up what’s still possible and what can fit into the day, and otherwise taking a more relaxed approach to life. It’s something my daughter is really pleased about: for her, it’s new to have a mom who works differently to before, with a lot less conflict and arguments. My boyfriend finds me easier as well – I give in a lot more and let him get on with things.

I find Mr. Long exciting and fascinating, too. I said this to my doctor, who was astonished and just laughed. But when you have to really find out how you work and get to know yourself from scratch – which I've never actually done before – then the whole thing is really very interesting.”

» to  Part 1, Part 2, Part 3