reflections on 2021…

Hi friends.

It has been a minute. I’m not great at keeping up with the blog lately, mostly because I don’t have a lot to say.

Working From Home…

I am back working from home again, not because of the pandemic (despite the significant rise in cases here), but because we switched office locations in September and due to the supply chain shortages, we are still awaiting the arrival of our new office furniture. This marks the 5th time since March 2020 that I have had to transition back to working from home. 

In the past 21 months, I have worked from our kitchen table, dining room table, upstairs home office, and downstairs guest room, with long stints at my official workplace in between each. I don’t mind working from home. I don’t mind working at the official workplace. But I hate this back-and-forth shit. Every 3 months I’m somewhere else. The lack of consistency is draining, makes it difficult to focus on my job, and is forcing me into an existential void of constantly wondering where I am and whether I’m supposed to be working or eating dinner at that table.

…While Husband is (Not Working From) Home

Husband has been unemployed since September. His work environment had become toxic, and despite working for the same employer for 20 years, his benefits and ability to take vacation were slowly stripped, yet he was expected to work 1-2 hours of overtime daily. It caused enormous stress for him while working, and for both of us at home, as I had to take over the majority of the household duties on top of my own work schedule while he worked late.

As husband is more and more removed from his previous job, he’s much less distressed, whereas my anxiety increases with every day he’s not earning a paycheck. I like working. I want to work. I (and I will venture a guess that most chronically ill people) would prefer to go to work than to sit home feeling unwell. It helps me feel like a productive member of society and reminds me that, despite the sometimes overwhelming evidence to the contrary, I’m not the dumbest person in the world.

But there are three people who live here (we’re caregivers for my father-in-law), and bearing the responsibility for the bills is stressful. I get the legal minimum amount of paid time off per year, which is 5 days. Someday I will write a longer post about the challenges of working with a chronic illness in an economic system that values profits over all else (don’t get me wrong, I love capitalism). Many of us with chronic illnesses who are able to work (which, admittedly, is much more attractive than the alternative) settle for jobs that have flexible schedules in exchange for minimal benefits. I can take as much time off as I want for a POTS flare – I just won’t get paid for it. Which was perfectly fine when the financial state of the household didn’t rest solely upon my shoulders.

2021 and Other Things That Are Lonely

These days, I spend most of my days working, and most of my evenings creating transcripts of the POTScast – the POTS podcast – for the hearing impaired. It has been a year of isolation, perhaps even moreso than 2020. Last year, it felt like with friends and family, we were apart but together. Sending texts and having video calls and mailing care packages. There were online concerts and beer tasting and planetarium shows in 2020. Lots of ways to still feel connected. We don’t do any of that anymore.  We met up with friends in November and then again on Christmas Eve, but prior to that it was probably June when we last saw friends.

Our Christmas was quiet and lonely. Husband and I had a few days to ourselves (which hasn’t happened in 3 years), as his dad went to visit his brother. We were hoping to take a road trip for a few days since, as caregivers, we never get to go on trips together. It was scheduled to rain during the entire trip, so we ended up cancelling. So it was just the two of us, plus this handsome boy:

We didn’t see or even talk to any family on Christmas Eve or Christmas, and they felt like any other lonely days.

I think I handled Pandemic: Year One satisfactorily. As an introvert, the isolation was a nice change of pace, and a much needed time of reflection as I processed the grief of losing my mom. But Year Two: The Sequel is bullshit. I expected that once vaccines were rolled out earlier this year, life would be recognizable again. But it’s not. I don’t know if that’s caused by the pandemic, or being home all the time, or taking care of any 80 year old, but I miss how the world used to be. I miss feeling connected to other human beings. And while I’m grateful I have the husband, it’s easy to settle into mundane and hollow day-to-day conversations while neither of us is working outside the home.

The Health Sitch 

On the health front, I have an appointment with a GI doctor in January that I’m nervously excited about. It’s actually with a GI nurse practitioner, as her waiting list was only 2 months, compared to the 8 month waiting list for the gastroenterologist. I have had good experiences with NPs in the past and find that they often know their shit in more depth (and are able to communicate it more delicately) than the MDs.

I debated making the GI appointment for years, as I don’t have gargantuan GI concerns – mostly some nausea and abdominal pain which has increased in frequency as of late (and no, I’m not pregnant, sister, but thanks for asking for the millionth time). But I’m tired of the instability in ferritin and vitamin D levels. That will most definitely be the subject of its own post, as there is a lot of information on iron deficiency in POTS (see, e.g. https://pubmed.ncbi.nlm.nih.gov/23720007/) My ferritin dropped 30 points in 3 months, despite taking large amounts of iron daily. Vitamin D dropped 40 points in 6 months, despite taking 8x the recommended amount every other day. It feels like an exercise in futility to continue to take things that are not being absorbed. So, I’m ready to ask for help in figuring all of this shit out. I hope Nurse Practitioner is enjoying a relaxing holiday in preparation for our visit, because it’s going to be a doozy.

Peace Out, 2021

I was going to end there, but after rereading this post and reflecting on its rather depressing tone, I wanted to end on a more positive note. Because despite this shitty sequel, I have high hopes for the next installment of this pandemic trilogy. I hope to do a better job at creating meaningful connections and hopefully calm my existential dread through writing, reading, and,  hopefully, real people.

So, in the spirit of starting the year off with a wee bit of optimism, I will share a few good things that happened this year.

• I didn’t take a beta blocker at all this year.
• My fantasy football team came in first place this year and is in the league SuperBowl this weekend. In a year otherwise filled with mediocre and satisfactory occurrences, I’m relishing in being good at something. Even if it is playing pretend games of a sport I know little about.
• I finally learned how to do a burpee – and then proceeded to do hundreds of them throughout the year.
• I got to see my dad 3 times this year. I didn’t get to see him at all last year. He tells the silliest dad jokes and gives the best bear hugs.
• Spent a couple days staying at the beach with my sister.
• Learned how to correctly pronounce Worcestershire.

Friends, tell me something good that happened in 2021.

“We tell ourselves stories in order to live.” – Joan Didion 

Happy New Year.
Linds