Up and down it goes
Over the past few months, I have been sharing insights into living with a set of chronic conditions and some hard-earned lessons learned. How the art of losing becomes a new, unwanted life skill that one gets to hone on a regular basis. The strategies of pacing, prioritzing, and planning (more on those soon) that are the most important tools to get somewhat of a grip on Long Covid. Endless lists of transforming symptoms and a handful of medical procedures and interventions that might bring a slight relief.
My health kept deteriorating for almost half of 2023, roughly between April and October, which is when I was reinfected. Since then, I have started noticing tiny improvements, especially with cognitive issues, like brain fog, and utter exhaustion (now just, you know, normal exhaustion). I credit this new phase to the meds I was prescribed for my Covid re-infection (Paxlovid): The main side effect was a disgusting taste in my mouth at all hours of the day and night (described in the package inserts as “metallic” - if only), but in retrospect definitely worth it. There has been more balance - compared to before - in my symptoms; more predictability. Less oscillation between extremes.
Stuck in the middle…
In this phase, my chronic illnesses appear a little more manageable with continuous pacing, prioritzing, and planning (3 Ps). One upside is that I recently had a tad more energy for my so-called social life. Seeing family and friends more regularly is vital to my overall well-being, and while every meeting still “costs” me energy, the positive effect almost balances it out. To celebrate my loved ones’ successes, progress, and plans has been filling my pockets with joy, so much so that it is overflowing.
However, peeking my head out of my apartment and tiny bubble and dealing with less brain fog has also highlighted the relativity of time and my reality of it. At home on my couch, when I don’t know how to keep a comfortable posture due to muscle and back pain, tension, and frequent headaches, it feels like I live in another dimension where time moves at a different pace. In my little bubble, I live on chronic illness time, which means that simple tasks take longer and I am constantly miscalculating how long it might take me to, say get ready to leave the house or brush my teeth.
The day-to-day is very much determined by the 3 Ps and the varying state of my health on any given day. Successes are significantly smaller, like being able to vacuum my whole place in one go or sitting down and writing a text without searching my mind for words and phrases I cannot reach. My cats receive a lot of attention and help in maintaining a daily routine that is ruled more by their needs than my exhaustion.
Still, every now and again, I cannot help but notice that I feel stuck. There is no promotion, trip, or wedding on the horizon. No foreseeable end to my health struggles. While I never saw myself following a traditional life path, I also never saw myself as someone who would passively watch other people’s progress. At the beginning of my 30s, I was excited and sure that this would be an amazing decade. Well, every year has gotten progressively worse, so I really missed the mark on that one (despite my uncanny ability at times to “foresee” things - thank you, neurodivergence).
Opening up about these thoughts and emotions is not about self-pity. It is about vulnerability and giving these experiences space in my life and on the page, putting them into words. They need to be out there, they need to be acknowledged and not shoved down by positive thinking. That allows them to co-exist with my glimmers, my anger, my sadness, and only then can I continue to work on my own path and inch closer to navigating these times with more acceptance of my circumstances. I have done this successfully before (healthy) and I can do it again: create my unique way of being in a world that was not made for me; with all the complexities that come with it.
Words that remain
Glimmers
Glimmer: a micro moment of joy, awe, hope, safety; opposite of trigger
📺 Watching Good Grief on Netflix. While I expected a more encompassing treatment of grief, there were still plenty of deeply relateable moments. Just have some tissues ready 🩷 😭
🚶♀️My walks because the last few weeks were a little harder again and I couldn’t always go.
🩷 Friends who come for a visit bearing delicious goodies: Carnival season is officially over, so I’m glad I could enjoy some more Faschingskrapfen on Sunday 😋
A question that remains…
Do you celebrate carnival where you live? What was one of your all-time favorite costumes? ✨🥳🪄🎈
Another great post, Yvonne. You strike me as someone who could be a source of inspiration and hope for others who have had to accept chronic illness in their lives. I would love to see you publish a personal essay, somewhere very mainstream with potentially thousands of readers, who then would learn about your substack and possibly become followers. Your insights are deep and smart and your candor is rare. More people need to benefit from your experience and your ongoing processing of that experience. Happy to help you get something ready to submit to Huffpo or Shondaland. Thanks for this post. Your subtack is one of my glimmers!