Everything is Harder, the Tuesday Edition

Is it Tuesday? No, I think it’s Wednesday. But I haven’t gotten to the one thing I wanted to do yesterday, and I’m all out of energy again.

I think this scene in the saga starts on Sunday, when we got three inches of water in 20 minutes and spent then next hour running around trying to keep our garage from flooding. 

Is it Wednesday? Yes, it’s Wednesday. And I’m still tired.

This morning I sent a couple of emails to members of a couple of committees I’m on saying I’m probably going to have to resign, and do they want me to resign now or wait until the end of the cycle. Writing is easier than talking, but I’m still worn out by the time I find all the email addresses and send both messages. In addition to the cognitive issues, it’s emotionally hard to send these messages, because the committees do important work, and I want to be able to contribute.

Then I talk through the portal to the provider for one of my medications. Talking is hard to begin with, but talking with dropouts because the wifi signal is weak (my end or hers? I’ll never know) is even harder.

I look at social media. Why does that always turn out to be a mistake? Someone has posted an FYI: CVS has the new covid vax! I want it as soon as possible, because there is anecdotal evidence that getting revaccinated can help with long covid, and I don’t want to get covid again.

I call the local CVS. The recorded message says they have the vaccine in stock. I try to get through to a human, to see if this is really true, but fail, because that’s the way the world is designed right now, because why let a human do a job you can farm out to AI? Shitty AI, if you want my opinion.

I run off to CVS. They don’t have the vaccine. I tell them the recorded message says they do. They know. I try to explain that I don’t have energy to run around like this, because I have very little energy, and misinformation is actually harmful to me. Do they get it? I don’t know if they get it. Talking is hard. Talking when I am already tired.

Then I have to drive to the doctor’s office to pick up the papers for the disability application. At school, Catherine comes out to meet me at the car to take them to HR.

Home. Lunch. Crash.

Meds, Cognition, and Time

I think I have finally found a way to manage all the meds that doesn’t take a ton of cognitive energy, which I have so little of, all day.

Between all the medications and supplements, there are sixteen pills. Then there are the two inhalers, one  I snort up my nose, one that gets added to food, and one that has to be dissolved in liquid. It usually goes in my morning coffee and—thankfully—has no taste or texture.

I have to remember to take two as soon as I wake up. There’s a hefty handful each with breakfast and lunch, and few more at dinner and at bedtime. 

I’ve had reflux for years, and meds have never helped it, so for a long time I’ve had to be careful what I eat, and when. Adding all these pills to the mix was a process of trial and error to make sure anything that might bother my stomach goes in relatively early in the day and with food. Rolaids and occasionally Pepcid come in if I screw up.

Sometimes I dread eating breakfast because I know it means I have to choke down six more pills.

Before Covid (BC?), I had a hard time keeping track when I all I had to take antibiotics four times a day. Organizing and remembering all of the stuff I’m on now, mostly for brain and lung damage, for which it provides some welcome relief but not nearly enough, has been pretty overwhelming, and it has taken me many weeks to find a system. And remembering if I took a pill or used an inhaler? Yeah, right.

After much searching, I found a pill organizer that is actually big enough for the breakfast and lunch doses. Bonus: the daily inserts come out of the organizer, which makes them so much easier to fill and empty than the kind where everything is connected.

And I’ve finally figured out how to use the iPhone “tasks” app effectively. I’ve divided up the day into two-hour intervals and I can check everything off when I do it, and then uncheck at the end of the day to be ready for the next day.

But, you know, I’m supposed to be finished with breakfast and all the morning meds (plus three full glasses of water) by 10 am. I just took the morning meds and I’m still working on the third glass of water and I’m an hour and a half late. I am trying to give myself the grace not to stress about that.

Pacing and Recovery

You have to pace yourself, the doctors tell me, the occupational therapist tells me, the physical therapist tells me.

Learning to pace myself, it turns out, is a constantly evolving challenge.

I’ve started recovering physical strength, with the help of PT, and I’m able to handle daily life stuff withouth getting out of breath. Taking a shower, unloading the dishwasher, running a couple of loads of laundry. I can even manage some of the medical scheduling on my own — Catherine was doing all of this for me for a couple of months. 

I walk Stella. Or does Stella walk me? A month ago, we left the house and walked to the end of the block and back. Now we go around the neighborhood park, a little more than half a mile. We stop a lot so she can sniff things: she paces me.

Last week, I went for my first two bike rides since before COVID, and started lifting again, with the encouragement of the physical therapist. And with a long list of limits and precautions. I saw several deer and a couple of turtles in the park, and I worked up a couple sweats, and it felt great.

I also went to the Apple Store last week because my phone battery was draining itself, and two hours later, I was exhausted, and I’m still not exactly sure why. A combination, I think, of social interaction, overstimulation from all that was going on, and just not being able to rest when I started to flag.

It took me four days to recover.

I have so much trouble with words, mostly finding them, occasionally understanding them. Writing emails is a cognitive challenge. Working on revisions to that overdue book chapter that is is a much bigger challenge. I read a novel a few days ago for the first time since before Covid. I picked it because it was short. I took a lot of breaks.

After I hit “publish” on this post, I’ll go lie back down on the couch.

Yesterday, I went to the beach for the first time this summer. It, too, was exhausting, physically rather than cognitively. I swam only where there were almost no waves, and even that was challenging. Being in the water made it hard to breathe, something that’s never happened before. There was a lot of walking.

I am flattened today. Today, I struggle to go up and down the stairs to the basement. I napped this afternoon, something I haven’t needed to do for a few weeks. 

How long will it take to recover?