As I write this, it’s right around sunrise, which is my best time of day. As my day starts, I usually feel pretty good. My dogs and I leave the house before daylight, getting coffee and spending an hour or two outside — writing.
I come back home and go on my daily walk, which is now up to over 45 minutes (roughly two and a half miles). Then back home, I turn the music up in the backyard for a few hours; exercising, absorbing the music, and finishing with yoga.
The fatigue is still intense, like nothing I ever could have imagined prior to getting sick. It really takes hold after lunchtime, so I take a much-needed nap every afternoon. I take it slow through the remainder of the day and try to get to bed early.
I visited my pulmonologist on Friday. He says my chest x-ray doesn’t show any improvement in my lungs in comparison to June’s x-ray. With my advanced level of respiratory failure, he has hope that in a year or so, I’ll start seeing noticeable improvements.
There’s a heaviness in my chest that seems to have become more pronounced with the humidity in the air from monsoon season here. I cough deeply, but not as severely or as often as in months past. It often takes effort to breathe, but in comparison to my months on supplemental oxygen, it’s not bad at all.
The cognitive issues don’t seem to be improving. My short-term memory has been affected, especially remembering things that literally just happened. I can’t multi-task like I could, and I forget to do things. I had a long period of hypoxia (oxygen shortage) — and I’m seeing the impact of that.
My neurologist ordered three tests to try to get more clarity on Covid’s impact on my brain. I’ve completed a Brain MRI, and a Brain EEG. Now on October 25th I will spend the afternoon having what’s called a neuro-psych test. Then on October 31st, I’ll go back to see him, and we’ll talk about the findings of all this.
Currently I’m on long-term disability leave from work. As active as I’ve always been, this has been an adjustment. But I’ve learned that the key for me is finding the routines that have the balance of allowing for rest but also challenging me. Pacing myself and not doing too much each day is important, as is staying patient and positive.
Shelly’s amazing. I’m her caregiver, and now she’s also mine. We are certainly managing to make the very best of every day, not letting much bother us and having as much fun as we can.
Music continues to be front and center for me. I am pacing myself to see as much live music as I reasonably can — Dylan and I are seeing the Gorillaz at the arena downtown tomorrow night!
I really am thankful for life.
I have a deep understanding that we never know what the future holds.
But I do know that I am going to continue to appreciate the beauty of every single day.
Ten Thousand Days 