Adjusting to life with chronic disease
A year into being a long-hauler the concerns are different but no less present.
December 2019, the December before I got sick with Covid, I went on a solo trip to Iguazu Falls. I flew to Buenos Aires and got a connecting flight to Iguazu and explored the falls that rest at the intersection of Argentina, Paraguay, and Brazil. It was glorious. I’ve been blessed to have many adventures in this life but the first view of Iguazu Falls is not one that will leave me. The falls were incredible and massive and awe-inspiring. It is one of few things in life that lives up to the hype.
One day of my trip I went to the Brazillian side of the falls. I boarded a helicopter and saw the aerial view, when I came down I jumped on a boat and got driven as close to the falls as possible, I got into a white water raft and rafted out of the falls with a group of folks, once the river got calm I swam/floated besides the raft for a mile or two, then I got out and hiked 4 to 5 miles to experience every angle of the falls.
Aside from being a nice trip and thing to do for me, I give it as context to the level of activity I was regularly a part of before Covid turned my life upside down. If I was engaging in the world I was ferocious and exorbitantly curious in my exploration. I struggled with weight issues my whole life but it wasn’t until I found weight lifting 4 years ago that I really found a way for my insides and outsides to match up. What years of social critique could not possibly motivate, a desire to voraciously explore the world on my terms did. So when my life came crashing to a halt 3 months later after a hiking trip to Zion National Park, the halt was crushing.
What came next was the devastation of our world, our country, our communities, and for me, my body. 2 months of acute Covid and what is now over a year of Long Haul Covid. I had essentially spent the months of March through December in bed. Unable to do even the most basic caretaking of myself. I thought I was likely going to die twice in the middle of my acute bout. I fell in the shower five times over the last year as my body struggled for balance and the ability to sustain up for more than 15 minutes at a time. I had once injured my back so badly I spent two weeks in searing/screaming pain. I had an operation to remove a ruined Gallbladder in October. Used a walker for even short distance walks through March of this year. The pace of recovery has been glacial.
I fought that glacial pace for many months. Diving into research and different online communities even while I rested in bed and struggled to focus on words on the page. I was grasping for anything that could give me my “old life” back. I fought and fought and fought being chronically ill, until one day I listened to my body and let it guide me instead of insisting that my brain guide it.
The realization did not come all at once, there was no epiphany. I certainly had plenty of people telling me to stand down. Sometimes you just can’t hear something until you are ready to hear it. Something about the loss of my Tía Virginia and my Abuelita Lupe in October and December shifted the fight so significantly. These women, these strong and proud women in my life had been taken from us. All I could think about was how much they unconditionally loved me in ways I had always struggled to love myself. I put down all the war metaphors and started to just be. To allow loving rather than healing my battered body to be my biggest priority. It was then and only then that I started to see any improvement. It required my sleep, my rest, and my diligence in protecting those two parts of my life.
I find myself in this very odd in-between state now. I am neither well nor am I in the thrall of the sick. With enough rest and caretaking, I can present as healthy. I can spend down the capacity of that healthy with just a couple of tightly scheduled days and end up back in bed. This in-between state requires a kind of ruthless prioritization I have only ever deployed in my professional life. The goal is now to have as many good and enjoyable hours as possible and to engage in the world at all is to ensure that I’m healthy enough to do so. To spend my limited energy supply on the things that matter the most to me. Playing with my nieces, doing work that I believe in and enjoy, loving on my friends and family, and steadily increasing my physical abilities are all priorities that I organize my life around now.
It has put me in the odd position of getting good at saying “no”, for the first time in my life. I wanted to offer the rundown of questions I’m asking myself before, during, and even after I make commitments. The hardest “No’s” I’m giving right now involve things I would normally like to do but require of my body something I have to prioritize out. When your body is experiencing Long Covid you only have so much energy to give before a crash and you gotta cultivate not crashing. Have patience with me, beloveds, I may visually be able to appear much better than I actually am. If I crash, it is very, very visible. You can see it in my body, face, eyes, color. But the goal is to not crash. This means I have to say “no” much more right now.
- Can I rest a few hours to at least an hour before this event/outing/meeting?
- If I’m driving, will the length of the drive require rest when I get there?
- If I’m driving, will the length of the commitment cause my body to shut down if I have to add it to an hour-plus drive?
- Are there places to rest as defined by lying down in silence or lack of chatter?
- Is this purely joyful or is there a cognitive load to any of it?
- Was the day before the commitment stacked with concentration and will my reserves be depleted as a result?
- Do I have to use an alarm clock to wake up for this gathering/meeting/zoom/event or can I wake up when my body tells me it’s ready?
- Is taking my meds something I can do discreetly and privately without getting asked a lot of questions in this environment? (It gives me cognitive load to have to explain my situation over and over to people I don’t know)
- Have I had a Long Covid flare that has put me in bed within 72 hours of the commitment? (Signaling that my body is asking me for rest)
I offer these because so much of the writing on chronic disease has been helpful to me to understand the life I am living now. Sometimes folks say “Glad to see you are better!” and I’m like “This is a curated service to myself and the world. Not my current condition.” I’m struggling for how I say that without sounding like I’m poo poo-ing folks excitement or relief. To accept that even if my body never gets “better”, it doesn’t mean I won’t be living a life worth living. Even so, coming to that very hard prioritization is a necessity. It doesn’t come without hurt feelings from people who want to engage with you but struggle with understanding the new conditions of that engagement. It doesn’t come without explaining your new condition to the people close to you. It doesn’t come without creating boundaries you’ve never created before. It doesn’t come, at least for me, without guilt that I have to rewire.
So I publish this in hopes of supporting the healing that so many of us are doing now. One that has no endpoint because we haven’t figured out this terrible disease. One where doctors don’t have answers or therapies for anything but symptoms. The in-between is so hard. It requires over-communicating at a moment when communicating can be depleting and I want you to know it's okay if we don’t get it right all the time. This has been a mass disability creating event, and now that the world is opening up again, we’ll face much more pressure to “just be better” than we did when we were all restricted to our homes. We aren’t better. We may never be. Don’t get me wrong, that is not me saying let's give up on getting better. Far from it. I want us to care for us now, to create care plans for our now. To build a world inclusive and loving of us no matter our limitations. So that the day we “get better” we’ve built a world that allows for more people to be a part of it because we used this mass event to caretake for folks whose other illnesses haven’t been cured yet either.
