Part 9: Taking care of business

April 2023 - June 2023 (Month 16-18)

When I last sat down to write (too many months ago) things had just ticked upwards and I had made a small, incremental improvement. Recovery from the last COVID infection in February (and whatever else was going on) left me in a good place with new found energy and more importantly, a slow return of capabilities. It’s late October and 6+ months later now as I write this post and that phase feels like a lifetime ago, so let me catch you up on what’s been going on.

Back in November 2022, a couple months after stopping with the crazy idea I (and unaware doctors) had that exercise was going to help me, and after adapting to starting on beta blockers, things really seemed to stabilise for me. It was a good month of rest, pacing and just generally settling down. With the stability came an increased sense of wanting some normalcy back in my life. Truth be told, after nearly a year of chronic illness, I was beginning to crave something concrete to do, something engaging and productive, and maybe most importantly of all, something to keep my mind off of constantly being sick. I missed work.

I decided to reach out to my manager at work and check in with how things were going. With the support of my doctor, my manager and my colleagues, I turned it into a regular Zoom call just once a week for an hour to get back in touch and learn about what I’d missed in the previous year. By around Christmas time though, I stopped doing the regular call. People were busy, I was busy and shortly after that was the February “COVID plus COVID rebound month of hell”. But the working trial was successful in the sense that I caught up on the major events of the year, and I started to feel motivated for a return.

Spring had sprung, and with it, a new beginning at work.

In April, I officially started back at work on a return-to-work program (Stufenweise Wiedereingliederung). In Germany we have a special kind of arrangement for exactly this scenario of returning back to work after a period of extended illness — the Hamburger Modell. It’s supported by four parties: the patient (me), my doctor as the advisor, the health insurance company, and my employer. It works like this: the patient and the doctor agree on an incremental return to work plan, and in this time the employer agrees to support and abide by the pre-defined schedule of hours, while the insurance company continues to pay sick leave. At this point, I also had an end-date for sick pay — June 26, 2023. So in a sense, the clock was ticking in that I also needed to return to some level of work in order to have any kind of income flow myself, in addition of course to what Sabine was earning.

Here was the plan:

• April 1 - April 30 (1 month): 2 hrs/day, 4 days/week, 8 hrs/week, 20%

• May 1 - June 15 (1.5 months): 4 hrs/day, 4 days/week, 16 hrs/week, 40%

• June 16 - July 31 (1.5 months): 5 hrs/day, 4 days/week, 20 hrs/week, 50%

• August 1 and onwards: 6 hrs/day, 4 days/week, 24 hrs/week, 60%

As was expected, I started very slowly and spent April just testing the waters, watching recordings of major meetings and events, reading some academic papers, having some re-introduction Zoom calls, and generally just catching up. I basically couldn’t do more that, and with just two hours per day, there really isn’t a lot to dig into. But that wasn’t the point anyways. I was going from zero hours a week of work to eight and I didn’t want to crash and burn before actually getting anywhere. The name of the game was to build up endurance, both physical and cognitive, in order to have a sustainable work load. I think this was also the first experience I really had during Long COVID where the fatigue wasn’t made worse by physical activities, but cognitive. At the beginning, I was limited to maybe 40 minutes of Zoom, with a break after 20 minutes being required. I tried two Zoom calls back to back once, and it floored me for hours afterwards. But I kept at it, and followed the plan, pacing and learning my new cognitive boundaries and physical limits. After some time, things indeed got easier, but as with every other phase of this illness, it was painfully slow progress.

Napping and cat cuddles were still required.

I look back on this phase with a lot of joy as well. In a way it was like starting a new job. I knew many people already of course, but I got to almost re-introduce myself. I had a kind of fresh start to define not only how I wanted to work but also who I wanted to be at work. I had to learn to fully respect my own limitations and not push beyond what my mind was capable of, not only my body. And maybe most importantly, I had to practice openness and full transparency with my colleagues. No hiding behind excuses or lies. The plain truth was that I just couldn’t do more than what I was already doing, and both they and I had to be ok with that.

This is all a theme we’ll revisit in later posts I’m sure and is something that I remember reading about in other peoples’ recovery stories too. This is the place where the comeback stories begin, the phoenix rising (in ultra slow motion) from the ashes. This is the phase in which lives are reshaped not in the form that they were before the illness, but in a new form based on the experiences and learnings brought about from chronic illness.

And with that, I was welcomed back with open arms and the full support of my employer, Elastic (and yes we’re hiring). April went by in a blast, as did May and June, all the while I progressed through the plan and a couple weeks before my sick pay would officially end, I switched back to the company payroll. I was gainfully employed again!

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