Wow, it’s been like, six years since we posted on here. Initially, things had slowed down due to COVID hitting and needing to stay home when I wasn’t at work. Being an essential worker sucked, but it really reinforced a lot of the reasons that I was working on my masters degree so that I could get out of retail and become a teacher.
Since I wouldn’t be able to continue working and do my student teaching at the same time, I had to quit my job and say goodbye to my apartment in Seattle to move back home with my mom.
I don’t know if I ever got COVID asymptomatically from working with the public unmasked (back when we were told to reserve PPE for medical workers and the immunicompromised,) but once I moved home I crashed and I never recovered.
I made it through my student teaching and had a couple of months off before I could start subbing, and thought I’d be able to recover. I kept trying to take the kids for regular walks, especially since we now had a FANTASTIC paved trail a 5 minute drive from us, but I could only make it two or maybe three days in a row before I’d find myself back in bed for weeks.
Thankfully, I’d built a full size walk-in catio for them in my mom’s backyard that summer. They have access to it 24/7 (unless the air quality isn’t good,) and then spend a good amount of their days out there. So at least they still had easy access to fresh air and the outdoors.
I tried rehabing myself, assuming I’d just deconditioned after having gone from a super active lifestyle to being largely sedentary. No matter how slowly I worked myself up, I’d always hit a wall after a couple of days. I was completely baffled.
When I lived in Seattle, I worked a physically demanding retail job (lots of heavy lifting) 40 hours a week. Then, on my Friday, I’d drive up to my mom’s house, do her grocery shopping, her laundry, and clean the house. I’d stay the “weekend” so that I could volunteer at her school the next day for experience. On my “Sunday,” I’d volunteer for the morning class, then take my kids on a nice long hike, before heading back into the city. All this while taking anywhere from 12 to 18 master’s degree credits. I felt amazing. I felt unstoppable
After we moved home, I suddenly couldn’t even stay awake through the afternoon, and then the aforementioned issues with trying to be active. I kept trying and trying, and I kept failing. I also did PT for a few issues I’d been having, and while it totally fixed one of the issues, both sequences left me far worse off energy-wise. I couldn’t understand it.
Suddenly, I had a whole health care team I was bouncing around between. The cardiologist I saw while getting diagnosed with POTS told me that I had not actually deconditioned at all, which was my initial assumption.
Since we now knew I had POTS (thank you, Tiktok, for pushing those videos my way, haha,) I started trying to recover in a POTS kind of way. Starting super slowly, 2 minutes of very chill exercise on an elliptical I got off of Buy Nothing, increasing slowly. Nope, back in bed after a couple of days.
It would be 5 years from onset of symptoms until I finally got my ME/CFS diagnosis. I’d been having one of my regular appointments with my neurologist (who I was seeing for my POTS and migraines,) and I was explaining to her how it was so frustrating especially because I’d been so active before. I told her what a regular week used to look like for me before I got whammied, and she was like “you know you match the diagnostic criteria for Chronic Fatigue Syndrome, right?”
Which like, really fucking sucks. There’s no treatment and no cure. But at least now I know what I need to do to avoid making myself worse and losing more functionality.
So we don’t hike anymore. The kids loved it even more than I did, and I loved being able to give that to them, but it’s just not a realistic thing for me to do anymore.
I actually thought we’d lost camping, too. I tried a couple of times since becoming so disabled, but it was a bit of a mess, and would put me out of commission for ages. All while I was already getting worse from working my subbing jobs.
Since getting diagnosed with ME/CFS, though, I’ve been able to identify more specific things that make me worse, which allows me to eliminate or mitigate them.
Some big ones:
Driving: I’ve always found driving really relaxing. I’ve been the designated UHAUL driver for my extended friend group because it doesn’t stress me out at all. Once I drove 8 hours to my aunt and uncle’s vow renewal, hung out for the day, then drove 8 hours back, all because I could only get one day off from work for it, haha.
Now, if I have to drive half an hour somewhere, and then half an hour the next day, I’ll be in a Post-Exertional Malaise-induced crash for at least a week. I’ve found that if I only drive an hour, and then rest for the next day or so, it’s sort of doable.
Sadly, this means that every single one of the off grid wilderness campsites I used to go to is beyond my range. I’ve had to pivot to staying at paid campgrounds. This means that I’ve also had to do a bunch of research trying to find campgrounds that are open for tent camping year round, as I prefer camping in the off-season. Thankfully, with the Washington State permanent disabled parking placard I’m able to get half off of all campground stays in Washington State Parks. It also allows me to book ADA sites, and works as a Discover pass. Pretty handy!
Altitude: So, I live a bit above sea level. Which means the only way is up, haha. I really can’t handle elevation gain anymore. It can increase a little, but not a lot.
Bending over/lifting my arms/standing: My rollator takes care of the standing bit, but setting up camp requires a lot of bending and lifting. Neither are totally avoidable, but I’ve found ways to mitigate and limit how much I need to do either.
I bought what I call the “pop-up catio” that I can take for the kids to hang out in while we’re camping. It’s a screened in room with a floor, and a rainfly that can be put on. It’s incredibly sturdy, and easy to set up, with a pop-up roof, and walls that you pop out. There’s no working on the ground with poles, etc like there would be with a regular tent. This item was a real find, and none of this would be possible without it.
I also got (again, for free on Buy Nothing) one of those Yakima rooftop cargo boxes. While I do have to lift my arms to load and unload it, it saves me from having to super carefully Tetris everything into the car, which is less time spent standing, walking, and lifting. It’s a worthwhile trade off.
We’ve also pivoted to sleeping in the car when we go. It’s warmer, and I don’t have to worry about the kids somehow getting out during the night to go exploring (Sieh might try to go hunting.)
Anyhow, we’ve had to really change how we get outside. I plan on picking back up with updating this blog again, but it’s definitely going to look different from now on. No more hiking, and none of the road trips I always thought I’d be taking with my kids once I had summers off.
Camp Like Noodle 