My Experience with Long Covid

The last 18 months have been a trip.

Flash back to August 2021 - I had moved into a house I loved and the first few billboards I designed with @cryptoisreal_ had just went live in Austin.

I had momentum.

Then I went to an event, woke up sick the next day, and never fully recovered.

My main symptom - any type of exercise makes me mildly sick for 1-3 days afterwards. It’s counter intuitive.

On Saturday I played 2 games of spikeball and another wave hit me yesterday. My best option is to chill around the house until it passes.

Headaches, fatigue, high heart rate, heart pounding.

And if the physical experience is odd, the mental experience is odder.

When I tell people I have long haul, I can feel them subtly wince.

Nobody wants to believe that a bad pocket of air could disable them. I totally get it, and still, it’s isolating.

Have you tried turmeric? How about meditation? Maybe it’s depression? Have you tried a lymphatic massage? My friend had long covid, then he got a girlfriend and it went away. Do you think it’s just allergies? Have you tried magnesium?

Most of these boil down to - am I safe? Do I need to worry? Isn’t the virus over?

I don’t have answers, all I know is my own experience.

So many doctors. So many doctors who don’t have the tools to deal with it. Some who outright deny it because the medical handbook has no real answers. And a few who feel like heroes in the dark, up front about what they don’t know, following the research, and ignoring the mass gaslighting.

So many times I convinced myself I’m recovered, pushed beyond my limits, and wake up sick again.

The act of “trying” makes you sick. Not in the moment, but hours after. This aspect really fucks with you. And you go through the stages of grief.

I’ve listened to a lot of Ram Dass through this and one idea that’s stuck with me is that suffering is grace. It’s advice I don’t recommend saying to a suffering person, but at the same time, it’s true. Suffering is grace, at least it can be.

I can’t cure myself (at least yet), but I can make myself worse. I can drown in self-pity, anger, jealousy of the person I see on a run, of the person I used to be, etc. It would be so easy. You either find meaning in the suffering or drown in it. You don’t know who you are until you meet a challenge.

Luckily I’m still functional. I can do light activities with friends, cook dinner, work on my good days, meditate, etc. I also don’t have cognitive symptoms which are common in long haulers.

A healthy person wants a million things, but a sick person only wants 1 thing. It’s so true.

There’s something about repeatedly being gaslit about your health that almost drives you crazy, but actually makes you more sane.

God, the universe, whatever you want to call it - it has a sick sense of humor, and so do I.

It’s a constant, unwanted reminder to not take myself too seriously. To laugh at life and it’s wild turns. Not being afraid of my own mortality whenever that may come. Nobody knows when.

Hopefully I have a full life ahead of me but it’s out of my control. There is magic in every moment, and it’s so easy to miss.

If you want to learn more about my experience, the Ted talk below hits home. A wild aspect of my experience was learning that, for many years, people have gotten viruses and a small portion never recovered. The same exact symptoms (the Ted speaker has a much more severe case than me), but it was mostly ignored. The last 3 years have been a watershed moment for ME/CFS where it can no longer be ignored.

Doctors used to believe stress caused stomach ulcers until it was shown that H.Pylori causes stomach ulcers.

I have no doubt that they will find what causes long haul, hopefully soon. Until then I’m grateful for the experience. Life isn’t about winning or losing, it’s about grace in both. Holy doesn’t mean good, it means whole. Incorporating the light and dark.

The best thing you can do for anyone in your life with long covid or ME/CFS is to learn about it and believe them. It’s a crazy illness that is poorly understood and widely experienced.