Waking up in the morning always brings some kind of attention to my body, to my senses. I notice a sound or a movement nearby, the crook in my neck from how I slept, perhaps a dry mouth, a calm breath, or a racing heart. I try to decide if I’m still dreaming or not, then for a fleeting moment I long for the dream that I just woke from, trying to hold on to that fading emotion or memory of something not quite real but real enough. I accept reality and slowly let in all of the noises, the family chatter outside the bedroom, the alarm buzzing away, or perhaps it’s the rude reality of the cat walking on me and begging for food (again). I stretch, I feel my body ache and groan, and I roll my way up to a seated position no longer able to hold back reality.
After finally recovering from my (re)infection(s) in January/February, I noticed in my body a kind of awakening, a change. It happened quickly, like waking from a dream or rather, a nightmare in this case. I tested my body, mentally poking and prodding, trying to feel around for the change and put some kind of a label on it. Chronic illness is this endless game of questions. Why me? What can I do about it? When will it go away? But in this case it was a different set of questions: What am I feeling right now? What is this sensation? What is this change? These are often unknowable things but with time, we can slowly put some questions away and answer them outright or just shove them back into the dreams and nightmares from whence they came (and yes, I’m really satisfied with using the word “whence” in a sentence).
I was alone with the kids for a week in February while Sabine was on vacation, and so I had some things to do for the family. I paced myself and planned my days to make sure I had energy to prepare meals, order groceries, clean and tidy the house, and so on. As the days ticked on and I continued my pacing, I couldn’t shake this feeling that something had changed in me, that my pacing was maybe even too much, like I was holding something back. I knew exactly what this was, but at first I was unwilling to even say it. Friends, I was feeling better. I had recovered from the acute infection and had not gone back to baseline, but better than baseline. I continued with my daily activities and after weeks of being sick it was hard to remember what baseline even was. Luckily for me, I have data for that. Wearables and apps, subjective scores and objective, physiological measurements. In my momentary disbelief, I looked back at some of these metrics. I had to look twice, at least. Heart rate was down, mood had clearly improved, I had fewer symptoms and the symptoms I had were less severe. Friends, I really was doing better!
I tested the waters by doing a little more than I normally would. I spent time on the laptop catching up on two years of taxes (I know, I know), I took the kids to the climbing gym (with friend even), I took Luisa and her friends to the ice rink for her birthday party. I didn’t climb or skate, but I drove, I sat, I walked, I cooked, I cleaned, and I didn’t crash. As Queen said: Is this the real life? Is this just fantasy?
So what do you do when you start to feel better? Well, do more of course. I’ve learned the painful lesson of PEM over and over again though, so I did more, but in a controlled fashion. I walked more, I went shopping (yes, outside the house, in a real store!), I baked, and I even started doing yoga again (like, barely anything, but anything is something). I continued pacing while testing the waters and trying to keep the activity levels up in a sustainable way. My crashes turned into just “bad days”, I recorded my best days yet, and I continued to adjust to find that sustainable, new baseline.
As you’ve already read, there are a lot of scary parts of this chronic illness. They come and go and take many shapes and forms and this is yet another one of those moments. It’s that moment a few weeks after feeling better where I was continuously wondering if this will end. Is this the real life? Is this a fantasy? After 15 months of pain, anxiety, and general suffering, will this improvement hold? It’s the question that will linger probably forever, but looking back on March at least, I can say for certain that I’m doing better. I’m doing more, with less medication, and feeling better doing it.
What caused this? What happened to make this step-wise improvement? It’s not something I can know unfortunately since there were a lot of things happening at once. Aside from the re-infection, there was the Paxlovid which may have contributed to helping remove any reservoirs of persistent virus in my body. I had also just started taking some supplements like nattokinase aimed at improving blood circulation, and busting the microclots that I may or may not have. You don’t hear me talk much about these kinds of treatments (I will eventually make a post about what I tried and what I think has helped so far). But that’s because that’s not the story of Long COVID I think the world needs to hear. Me and my fellow suffers do often spend an inordinate amount of time researching and seeking any medication or supplement that could possibly, maybe, help in the slightest way against the myriad of theoretical causes of our illness. But that’s not the story. The story of Long COVID is in the people that experience it and those that experience it with us as caretakers, friends and family. You, my dear reader, are part of my story. We’ve been through the pain, the horror, grief, sadness, frustration and anxiety. Today, together, we go through the wondrously complicated combination of fear and relief of not wanting this improvement to end, but finally being able to bask in the sunshine of improvement.
Wow Josh, what a next step of your journey to read!! I felt myself holding my breath throughout. So pleased to hear about the month of March.. I'm hoping April is going just as well. West coast hugs to you and Sabine! -Brett
Hey Josh. I just finished reading the entire series of posts. Thanks for sharing… Man, what a journey! I found your balanced perspective and approach (the analytical and emotional) very inspiring. In your weakest moments (physically), you showed just how strong you really are. Keep staying positive, and I hope one day soon we can cross paths again and share some laughs. Big hugs from Edmonton, Canada.