Things I Would Have Told Jen

I’ve never been an athlete, but I used to be fit.

I enjoyed weightlifting and swimming, which I did four or five days a week. I also had about a million foods I couldn’t eat, and the combination of these things is the only reason I ever had anything remotely resembling a traditionally accepted female body.

Chronic illness changed a lot of that.

In my youth, the swimming was because of chronic illness. The water element kept me active and gave me the strength workout without being too much. Then the diagnoses came. Loads of them.

Then I couldn’t eat a million and two foods. My activity became more restricted. Also, pregnancy. Miscarriage. Pregnancy. Miscarriage. Pregnancy. Miscarriage. Pregnancy. Twins.

More diagnoses. But being me was still very doable. I understood that my normal had changed, and I lived by it incredibly strictly, not because I was particularly disciplined, but because it was what Body demanded. It was often not fun but it was doable.

Then COVID and menopause within three months of each other. Then long COVID.

More diagnoses.

In the last two years, something has changed again. And a friend helped me
realize the other day that it is time for me to accept that my normal has
changed. As challenging as my daily experience was before COVID, it
was a fucking cakewalk compared to what it is now.

Earlier this year, I asked a pulmonologist how I could exercise without doing myself in, because doing nothing isn’t shifting anything. For those who don’t know, when you have a connective tissue disorder (hEDS), you often have something called post-exertional malaise. 

I say that and everybody’s immediate response is, “Well, everybody has that.”

No. They don’t.

The next day after a hard workout, you might wake up a little sore. Maybe even a lot sore. But it goes away within 24 to 48 hours.

Mine doesn’t start until 24 to 48 hours after the exercise. And by exercise, I mean eleven minutes on Resistance 1 on a stationary bike. And by start I mean feeling like I have a flu for several days.

Nothing compared to what I used to be able to do two years ago.

I understand that the programming in my brain has to change to catch up with that. I’ve understood it for a long time. I can’t do as much. Sure.

But then there is the weight gain. The joint pain. The fatigue like I thought I could only experience with mono.

Eleven minutes on Resistance 1 on a stationary bike. That’s all. A week feeling like flu but not flu.

Post-exertional malaise.

I looked up whether it goes away with persistence, and Gemini said: start small. Build up. Eleven minutes is too long. I’ve been sitting with that for about a week. Pissed. Sad. Sore. Exhausted. 

Exhausted.

The catch-22 is that when I ride the bicycle longer than ten minutes, I have days where I’m kind of out of commission. But if I don’t ride it, my hips leave me hobbled. I literally can’t walk normally because they hurt so badly.

So. Five minutes it is. Because if there is anything I’ve learned about myself throughout my life, it is that when a message becomes vividly clear, I can’t behave any other way than what it says.

So yes. I have to ride the bicycle for my hips to not be in pain. There is no grand trajectory likely to be changed by five minutes. No weight-loss goal. No getting back to the body I had. No getting smaller. No traditional feminine presentation.

Five minutes.

Hips.

Walk.

Prayer to Body

Body,
I believe you.
You don’t have to teach me anything tonight.
You don’t have to solve anything.
You don’t have to prove that you’re hurting.
If there is something you want me to know, I’ll listen.
I don’t know what is happening yet, and you don’t have to know either.
We can be scared without deciding that we’re doomed.
We’re going to take this one piece at a time.
I am going to help you get care.
Rest tonight.