Recognizing my progress, despite the challenges this year has brought

So it’s once again time for A Chronic Voice’s monthly linkup. This month’s words are exhausting, exciting, socializing, indulging, and cutting.

Like most people, Covid-19 had a large impact on my life, and not always in expected ways. Join me in processing just what changed this year and the lessons I’ve learned from that.

Fear is exhausting

2020 has been an emotionally exhausting year. The global pandemic has impacted most people in some way, and giving most people an additional big scary thing to deal with.

I’ve had a bit of extra congestion the past few days and had a sore throat one of those days.

Most years, I’d be a little concerned about it possibly turning into something worse. This year, I’ve been closer to paranoid.

I’m concerned about the slight possibility that I’ve now contracted Covid-19. I haven’t yet decided if I’m going to get tested for Covid. I talked to my doctor and she agreed that it wasn’t a huge concern, but was absolutely fine with me getting tested.

Unfortunately, with my partner working and me not driving, it feels like going out to get tested may be more dangerous than just waiting it out (if I had more symptoms, or felt worse, it would be a different story). I am feeling better today, so hoping that it really was just an allergy flare.

On top of the usual increase in fatigue and general low energy, I’ve got the extra stress of Covid-19 fears amplifying both my fatigue and my awareness of symptoms.

I’ve written about the relationship between stress and Covid-19 and about how many conditions (including FND) are stress-responsive and increase under stress.

This year has contained an extra-large stress—the fear of getting a potentially deadly disease just from talking with other people.

Hugs feel dangerous.

Hanging out with friends isn’t so safe now.

The degree of risk has varied, but since March, we’ve had this fear and worry hanging out in our brains, wearing away at us.

For me, that’s expressed as extra fatigue (though my medications may also have played a part—I’m taking a pretty heavy dose of a medication that used to knock me out when I took it), a higher “standard” anxiety level, and a higher likelihood of getting symptomatic after any additional stress. It’s not fun, but I’m living with it.

I also recognize that while it’s been stressful for me, others have had even more stresses and fears.

On top of the systemic racism that white people are just starting to recognize en mass, Covid-19 has also led to widespread job loss, causing many households to be at risk of eviction, food insecurity, and all the fear and stress that accompanies these risks.

Staying in a state of heightened anxiety isn’t good for anybody, and I believe most of us have been dealing with that since awareness of Covid-19 really spread. I’m sure I’m not the only one tired of worrying about Covid-19.

Exciting progress—I’m on podcasts!

Despite all of this, though, I’ve been working away on this blog and on my coaching. I’m feeling proud of myself because I’m really starting to reach out and trying to publicize myself and my offers!

My first podcast appearance was earlier this year, with Nicole Neer who runs the Spooniepreneur podcast. This was my first time, and I really enjoyed our conversation. I hope that’s obvious from the podcast!

Since then, I’ve been interviewed several more times, though the podcasts haven’t all been released. I do believe that each of them is worth a listen for folks who like podcasts!

My interview on My Blurred Opinion will be published next Wednesday, and I’m really excited to share TJ’s work with everybody.

He’s legally blind and, like me, believes that the disabled community is at its best when we all connect and recognize ourselves as a single community.

We had a great conversation about making the most of life with a disability, and how we can always try to thrive with our conditions.

Monday morning, I was interviewed by Brian Vee for his podcast, Why We Work. His podcast focuses on motivation and mindset. We had a very interesting conversation about my work experience and the desire of disabled people to work.

I explained how the US social welfare system (and most others) damage people’s sense of self-worth and makes it harder for disabled and poor people who use those systems to regain our self-worth and return to work even if we become physically able to. He posted the interview that evening.

Last week, I talked to Monica Michelle, whose podcast, Explicitly Sick, is part of the Invisible, Not Broken Network. We had a great conversation about being disabled and how very broken the social welfare system in the US really is, and how that impacts us as disabled people.

That episode should be out before the new year!

I’ve also scheduled a conversation later in this month with Domo Jones, for her podcast Don’t Let This Disability Fool You. We haven’t yet discussed when that episode will be published, though she did tell me it wouldn’t be during 2020.

It’s been a great year in that sense—it’s exciting to start sharing what I’m doing more broadly and to get into these conversations with disabled (and occasionally abled) people—conversations that I think are really important for our community to hear.

Finding alternative ways of socializing

With Covid-19, I lost my typical ways of rewarding myself and of socializing.

I’m normally a very extroverted person, and had been putting a lot of my emotional energy into BiRequest, a bisexual social and discussion group.

I was actually going up to New York City rather often, sometimes multiple times a week, which was very energizing for me. However, things have, of course, changed somewhat dramatically since then.

I have not gone to the city since things closed down in March, and I don’t intend to go anytime soon. BiRequest itself is now meeting entirely online, as the current safety limits are keeping the LGBT center closed.

I decided to step back from BiRequest shortly after Covid-19, when calling out another member of leadership’s ableism left me feeling disrespected and unsafe.

Since then, I have chosen to stay in contact with many of the people I had met through BiRequest, but have no intention of returning to the Zoom meetings, and am uncertain if I will attend events in person whenever they may happen.

In an attempt to give myself some social connections, I have been more active in connecting with fellow bloggers, and have been making phone calls to talk to others many of the days I go out on my walks.

I’m doing the best I can to attend online events, reach out to my friends, and reconnect as much as I can.

I still have only a few friends geographically near me, but that doesn’t matter as much as I’m connecting with everybody predominantly by phone and video chat.

It’s a big change and one I’m still trying to make the most of (for example, I’ve been talking with friends in different time zones more often than I would otherwise), but I am doing my best to roll with the differences this year has brought.

Cutting down on time with my partner

One of the other big changes this year is that my partner, Al, was able to find a new job.

He had applied very early in the year, and the market that he’d applied to seemed to take forever to respond. When they finally confirmed their interest, they gave him a start date of March 16 (aka the day everything closed down).

They called him the Friday before he was scheduled to start and told him that due to the shutdown, they were going to wait a bit longer to start him so they could get a better grasp on the situation.

He didn’t actually start the job until early June.

He has been out of work for a few years, so I’d gotten very used to him being around the house. One of my big emotional triggers is feeling alone or abandoned, and one of the things that often sets that off is physically being alone.

I am thrilled that he has found this job and very happy that he is working again—but it’s been a big adjustment for me as instead of him always being around, now he’s out of the house for the better part of the day, four days a week.

Knowing that he’s also now at higher risk for Covid-19 exposure is an additional anxiety trigger that I do my best not to think about.

While intellectually, I’m very happy he’s working, it’s still a few layers of extra stress for me to have him not be at home with me like he was at the beginning of the year.

While we have a smaller quantity of time together, we make sure to enjoy our evenings—part of the time most nights is spent enjoying a meal together while watching (often bad) science fiction and horror movies (with a lively commentary).

We’re also really good at sharing space while doing different activities, so we’ll often snuggle up on the couch with him playing a video game while I either play a game or do some low-spoon activity for the blog.

Indulging in low-effort foods

I have been having Al take the lead in food preparation for over a year now, and he hasn’t been very into cooking—so was mainly putting meals together from prepackaged or semi-premade food.

Since he started work, I’ve intended to start cooking again (preferably healthier food), but it very simply hasn’t been happening.

Instead, we’ve been selecting prepared food, frozen meals, and other things that should require minimal effort.

However, there have been days where even that felt like too much, so we’ve also been getting more takeout, deliveries, and other :we didn’t make this at home” options—so too much fat and salt and cholesterol, and not enough fruits or vegetables or whole grains.

I’ve gained some extra weight this year, and having just gotten some blood test results back, it’s looking like I’m going to need to be much more aware of what I’m eating—which means thoughtfully preparing healthier meals for us.

I’ve got my work cut out for me—but I’m hoping that this was just the push I needed to get back to that healthier meal planning.

Al and I both deserve to live long and healthy lives, and I’ve been working on being better about my morning (sometimes afternoon) walks, but now I know the next project I need to work on is preparing healthier meals.

It’s been quite a year

While this year has been challenging for most people, there are ways that it’s been easier for me than for others, and I have also faced down my own unique challenges.

I’ve spent time focusing on how grateful I am for the positives this year. I have a roof over my head, access to food, a loving partner, pets, and the energy to work on improving my life.

Despite that, I’ve spent the year under extra stress due to Covid-19, though I’ve tried to make the best of it.

My partner’s employment has been a blessing, but has also added more anxiety to my life.

Despite all of that, I’ve been able to expand my goals for this business, get clients, better define what I have to offer, and appear on multiple podcasts!

I’ve kept myself focused and moving forward.

And while some things (like healthy food preparation) have slipped, I’m ready, willing, and able to step up and face this, rather than feeling overwhelmed or exhausted by the idea of more work to do.

It hasn’t been an easy year, but I believe it’s been one of growth.