SOME DAYS I DON'T RISE
Some days I push through. Some days I don’t. Yesterday, I stayed in bed with the lights off, the TV silent, my hair tangled and a bottle of water beside me that still felt like too much effort to pick up. I didn’t find the lesson. I didn’t turn the day into a victory. I gave up on participating in it.
I Spent All Day Trying to Start My Day
What an ordinary day looks like when pain takes up almost all the available space
Yesterday, I had one goal.I wanted to sit at my computer for an hour.That's it.Not eight hours. Not an entire workday. Not one of the marathon project sessions I used to disappear into from morning until some unreasonable hour at night because I had an idea and couldn't stop until I made it real.
One hour.
I wanted my body to tolerate sitting in a chair and my brain to maintain one continuous train of thought for sixty consecutive minutes.
It took me most of the day to get there.
I Was Ready by 10:45
I woke up at 7:30 Sunday morning already exhausted. I wanted to go back to sleep, but I've learned that sometimes the longer I stay in bed, the harder it becomes to get moving.So I got up.Pain: 10. Again.For months, my pain had been fluctuating somewhere between an 8 and a 10. For the last three weeks, it has been 10. 10. 10. 10.Apparently my body thinks we're figure skating in the Olympics. I would like it formally noted that I did not enter this event and have absolutely no interest in a perfect score.At this point, I'd happily take an eight.My right side was already locked up when I got out of bed. The worst of it was around my right scapula, traveling up my neck and over my shoulder. Vice grip is probably the closest that I can describe it. It makes me want to stretch it, compress it, crack something, pull something, push against something—anything that might convince the muscles to release.I took my morning medications, and my fiancé, Rob, made me coffee. Then we walked. He turned around partway through because his back was bothering him. I kept going.By the time I finished, I'd walked 2.5 miles in about an hour.This is where chronic pain gets confusing for people.If I can walk 2.5 miles, how bad could I possibly be doing?
Pretty fucking bad, actually.
What I can force my body to do does not necessarily tell you what it costs me to do it.
After the walk, I started getting ready. Laundry in. Bed stripped. Shower started.
Rob washed my hair because using my right arm hurt badly enough that, while I technically could do it myself, I really didn't want to. I shaved my legs. Every stroke of the razor hurt. I dried my hair, trying to use my left hand whenever I could because I'm right-handed and every movement on that side seemed to tug on something already furious.
Then makeup. Eyeliner required stabilizing my shaking hand while also compressing my wrist because the pain had traveled that far down my arm. Eyeshadow. Eyebrows. Mascara. Lip liner. Hair. Teeth. Clothes.
Even getting dressed requires a body inventory now because something I tolerated last week may feel completely wrong today.
But I got lucky. First outfit worked.
I checked the time: 10:45 AM.
Two days earlier, this entire process had taken until 11:30. My goal is eventually 10. So 10:45 was a win.
Great.
Now I could start my day.
Except Apparently I Couldn't
I grabbed the smoothie I'd saved from the night before, filled my water, made another coffee, and walked into my office.The computer wouldn't cooperate. Reset.While it restarted, I moved laundry. Then the dishwasher. Then trash. Then kitchen counters. Then back to the office. Then back to the kitchen.At some point, a trash can ended up soaking in the guest bathroom bathtub because it smelled. It would remain there until the next day.I was also running one of the side-income experiments I've been testing because I haven't streamed in three weeks, and financial stress does not politely wait for your body to recover.Eventually I made it back to the computer. It froze. Restart again.And because sitting still meant having nothing to distract me from the pain, I got back up.I vacuumed litter. Emptied the vacuum. Walked around. Laid on the couch. Heating pad. Got back up. Tried my Body Braid brace. Five minutes. Nope. Back to computer. Up again. Couch. Zero-gravity chair. Nope. Heating pad again. Laundry. Office. Kitchen. Bathroom.At one point I found myself standing on the opposite side of the house in my bathroom with absolutely no idea why I was there.I had been going to deal with the laundry.Hello.
Why are we here?
My Brain Feels Like Tangled Wires
"Brain fog" doesn't quite describe what happens to me when pain gets this bad.
My brain doesn't feel empty. It feels overloaded.
I already have ADHD. My brain naturally generates ideas, tasks, reminders, and connections constantly.
Add severe pain to that, and it feels like someone took an electrical panel, ripped every wire out, tangled them together and then told me: Find the one that turns on the light.
I know the wire exists. I know the light works. I cannot reliably trace the correct connection.
Sometimes the original thought disappears. Sometimes five more arrive before I can finish the first. Sometimes my body keeps moving after the thought has apparently left the building, which is how I end up standing in a bathroom wondering what the hell I came there for.
Eventually I remembered. Laundry.
The sheets made it to the bed. The clothes made it to the bed too.
I looked at the pile and made a deliberate decision: Not now.
The goal wasn't laundry. The goal was the computer.
So the clothes could wait. The bed could wait. The blanket just needed to move to the dryer.
I went to the washer, pulled out the blanket and immediately thought: Why the heck isn't this wet?
Then I opened the detergent compartment.
Oh.
I had put the blanket in the washing machine. I had apparently mentally promoted it to washed without completing the small but apparently optional step of actually starting the washer.
Fantastic.
I pressed Start.
Progress.
The Invisible Work Before the Actual Work
The pain never stopped during any of this.That's important.There wasn't medication, then relief, then activity. Heat, then relief, then activity. Stretching, then relief, then activity.I tried medication. Heat. Compression. A lidocaine patch. Lidocaine cream. Different chairs. Different positions. Walking. Stretching. Bracing.
At my computer, I dug the edge of my chair into my right scapula because pressure sometimes felt better than nothing.
In the laundry room, I folded myself forward trying to find a stretch that would release something.
In the bathroom, I braced both arms against the counter and pushed my body backward.
When I walked around the house, I often held my right side with my opposite arm.
I wasn't moving around because I had endless productive energy.Sometimes I was moving because staying still hurt too much.Then, once I was standing anyway, my brain would notice something. Laundry. Trash. Dishwasher. Whatever. So I did it.From the outside, this can look remarkably functional.Look at everything she accomplished.Inside the day, it felt completely different.
I was doing enormous amounts of work just trying to become capable of doing the work I actually wanted to do.
Then There Was Coffee
At some point I decided my coffee needed to be warmed up.
Simple. Go to kitchen. Press button. Return to office.
Except Rob started asking about dinner. He wanted to take me out.
Normally, this is lovely. Yesterday, every question felt like someone unplugging whichever wire I had finally managed to locate.
Have you ever been to this restaurant? No.
Would 6 be okay? Yeah.
What about 5:45?
I looked at the time. It was already 4. Absolutely not.
Later? 6:30. Great.
Then seating. Outside? Counter? Something else?
I don't care.
And I genuinely didn't.
Rob wasn't doing anything wrong. He was trying to do something nice for me. He was trying to make plans with his fiancée.
But pain had consumed so much of my processing capacity that normal conversation felt like another task I had to complete.
Eventually, the dinner decisions ended. Back to coffee.
Then my brain noticed the water in the refrigerator needed restocking.
No. Not the mission.
Then: Check the mail.
Taryn. It's Sunday. There is no mail.
Coffee button.
At some point I was standing in the kitchen with my head on the counter, coffee machine sitting beside me, trying to accomplish the extraordinarily complex task of pressing one button.
Eventually I succeeded. Coffee made. I carried it back to the office.
Then I finally found a productive groove and focused hard enough that I completely forgot the coffee existed.
By the time I remembered it: lukewarm.
Of course.
Capability and Capacity Are Not the Same Thing
Here's where this gets particularly ridiculous.
I struggled to warm up coffee. I loaded a washing machine without starting it. I walked into rooms and forgot why I was there.
And then I sat down at my computer and successfully finished a custom icon system I'd designed for my desktop.
Because apparently my brain couldn't reliably execute: Press coffee button.
But it could execute: Build a cohesive custom visual environment for my computer.
This is why I get frustrated when cognitive capacity is treated like an on/off switch.
My brain works. Sometimes extraordinarily well. It just isn't reliably available to me right now.
I can solve a complicated problem while struggling with something objectively simple. I can create while struggling to sequence basic tasks. I can hyperfocus and forget everything outside the thing I'm focused on.
The capability is still there.
The capacity isn't matching it.
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