Note the title. The play on words is intentional because if people bother to write it out, most people talk about a “typical day” in the life of a writer, a parent, or whatever, but nothing in my world is typical, and it hasn’t been for a long, long time. Prior to the pandemic, I was already disabled. 

NOTE: This post is a bit long but so important. Also, there will be lots of links as I believe in backing up my comments and giving more information about the various things impacting Molli and me.

For those who know me, you can skip the next two paragraphs if you wish. To everyone else, read on.

SOME BACKGROUND

I have a birth defect in my spine which has caused me severe pain and mobility issues since college. It was exacerbated by a car accident in my early 20’s and kicked off a decade of surgery after surgery, which ended up making it worse, not better. I also have primary Sjögren’s, which is a debilitating autoimmune disease, as well as Hashimoto’s Disease (or I did before thyroid cancer spurred the removal of my entire thyroid), Raynaud’s syndrome, and fibromyalgia. Nothing I did in life brought on any of these inherited, genetic conditions. I did not ask for this.

COVID decimated my life and eventually my wife’s life too. Neither of us asked for COVID and then long COVID to activate further issues. In me, it triggered diabetes, retinal eye damage, POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), and changed my sense of smell and taste forever (not in a good way). It also worsened by panic/anxiety disorder as well as my dyslexia, dyscalculia, and ADHD…by a LOT. In my wife, it gave her sleep apnea, MCAS, & ME/CFS severe enough that she has been basically bed-ridden since 2023. About the same time she was “laid off” right after seeking accommodations at work for her new disability.

SURPRISE?

Recently, I’ve had friends be very surprised when I’ve stated that Molli is mostly bed-ridden. While I’m very public about what’s happened to us since the pandemic began, sometimes I forget that social media doesn’t show everyone everything. People miss updates and information and then have no idea that when I say Molli is very sick and we’re really trying not to lose our home, I mean it. I’m serious. This is not hyperbole.

I’ve been wanting to write about our “typical” day or week for a while so here goes.

7:30 AM: Wake up. Even though I’m self-employed as a writer/artist and Molli is unemployed, our cats’ medications require us to get up at this time. No sleeping in yet. While I get up, take my medications (of which there are now plenty), and start prepping the cats’ medications, Molli takes about 30 minutes to be able to get out of bed because even though she’s technically awake, she’s already exhausted. (She already uses her CPAP. It’s not sleep related.)

8 AM: Feed cats. This is a two person job because otherwise, Riley and DiNozzo will try and steal everyone’s food. We have to watch them all eat until they are done. (By the way, DiNozzo is the most ADHD cat ever and takes forever to eat. He gets distracted by every sound or movement.) After the cats eat, we have to medicate all three, which is also a two person job. Riley gets 6 pills in the AM. DiNozzo gets 5 + a medication applied to the inside of his ear, which he hates. Malley gets a liquid medication that he hates because it tastes bad, plus a nasty paste-like medication.

8:30 AM Sometimes Molli is so tired, she takes her medication (which includes a medication that’s supposed to help combat the ME/CFS and sort of works) and goes back to bed. Sometimes she eats breakfast with me. Either way, because I am now diabetic, I have to eat breakfast so I eat. By this point, I’m exhausted and fighting the brain fog that comes with both long COVID and all the medications I take. I spend about 20 minutes doing word games to try and wake up my brain.

9 AM: I get dressed, brush my teeth, and all that normal getting ready stuff, only it takes me longer as I move slower and have less mobility to do it all. (For example, I can’t stand in the shower due to POTS. I have to sit and move slowly. That makes bathing and all that take a lot longer.) 

9:30 AM: If I’m lucky, I can finally start my day by here—two hours after I’ve woken up. If I overdid it physically or mentally the day before and thus, my symptoms hit me harder, I may have to go back to sleep for an hour or two, or go rest in bed, where Molli and the cats already are.

If I get to work “on time,” I log in to my body-doubling group on Discord/Zoom to officially begin my work day. Unfortunately, I don’t get to writing just yet. Usually, the first hour or two of my day is spent messaging doctors & veterinarians, scheduling medical appointments for us or the cats, researching a new medication or procedure to try to get our lives back, or scheduling other household appointments because we are so disabled, we’re relying more and more on others to do what we used to be able to do, like:

• Laundry. I miss being able to do and fold laundry without it exhausting me for days. Not an exaggeration. We often pay a company that picks up our laundry, does it, and returns it folded. Sounds nice but it’s $$ and unfortunately necessary. Otherwise we would be living in dirty clothes.
• Housecleaning. Because of my severe allergies, I’ve never been able to dust, vaccuum, etc. without consequences. Often like anaphylaxis level consquences. When I turned 22, my allergist told me to do whatever it took to afford a housecleaner to do it for me, so we’ve had that monthly for decades out of necessity. Now, because sometimes we can’t even load the dishwasher, we have a housecleaner who comes out weekly. That, too, is pricy.
• Grocery shopping. We are 100% relying on Instacart, Doordash, and Safeway Delivery in order to have groceries. These require delivery fees and tip, adding to an already expensive process. Besides the fact that going indoors with so many unmasked people is just asking to get COVID again (which we cannot afford), we don’t have the energy to walk through a grocery store, load groceries into a car, drive home, unload groceries, AND put them away. We just don’t.
• Any shopping. Like the above mentioned, if we can’t get it delivered, it isn’t being bought. I can’t tell you how much I miss being able to go clothes shopping.

Because we’re capable of doing less, we have to spend more. This is unmaintainable when Molli is unemployed and has been since 2023. We’ve been living off our liquidated 401K’s, which are super close to dry. Being disabled is EXPENSIVE. That’s not even getting into the fact that:

• our medication and medical expenses have quadrupled now that we have long COVID and various related comorbidities (not to mention diabetes)
• we’re paying out of pocket for health insurance, which costs us $2000/month to cover all our necessary specialists
• that the price of everything has skyrocketed while we’re not bringing in any income.

Even though we had to gut ALL of our savings & retirement to do it, we’re still able to pay our bills (at the moment). Because of this, we do not qualify for free healthcare, unemployment (which requires you to be looking for employment, which you can’t do bed-ridden), disability, or any government help at all. According to the government, we make too much. (Insert choking laugh-cry here)

Oh yeah, it’s now 11:30 AM.

Molli gets up and it’s time to feed the cats their lunch. (Their meds require regular eating schedules.) Then because diabetes and humanity, it’s time for lunch for the humans. At this point, I can try to work through lunch and get some writing time in (finally!). 

2 PM: It’s time to medicate the cats again. About this time, my brain is mush from working/focusing so much. Sometimes I need a nap or a rest break about here. After cat meds, Molli goes back to bed or, if she has the spoons, takes a shower. If it’s a good day, she might be able to one small, household chore like load the dishes into the dishwasher. If we are very lucky, Molli might have the spoons to cook something but those days are very, very rare.

4 PM: On a good day, I’m a bit more alert by this point and I try to do some throwing away trash/recycling, straightening up and decluttering around the house. I have to do this in spurts due to my various disabilities, but sometimes it helps me feel more awake. Doing this also cuts into my writing time but I have to take breaks every hour to stretch and move to prevent excruciating pain (thanks, spine!).

5:30 PM: Time to feed the cats one last time for the day. I’m likely done with any writing/art time for the day. Certainly not the full-time hours I used to keep. 🙁 

6 PM: Time for us to have dinner. Usually this is whatever can be thrown together quickly and easily. We live on our Ninja (toaster oven/convection oven thing), slow cooker, and rice maker. We also live for fruits and vegetables that are preparred for us (e.g. already chopped up and ready to serve). Of course, food like that is more expensive because it’s seen as a luxury but when you’re disabled, it’s a necessity. Like I said, being disabled is EXPENSIVE. Funny how you have to make under $1000/month in order to qualify for disability when disability is so freaking expensive. 

7 PM: At this point, I’m super-exhausted and need to relax, both physically and mentally. I read. I watch TV. I spend time with the kitties and Molli in bed. 

8 PM: Time to medicate the cats again. Continue to rest up.

10 PM: Last bout of medicating the cats—this time, only Malley for his pain meds. 

11 PM: Sleep time so I can do it all again.

WHAT YOU DON’T SEE

What’s not in that schedule is that in a given week, Molli, myself, and the cats may have anywhere from 3-10 medical appointments, which requires me to drive any or all of us to those appointments. Some are a short 10 minute drive but most require 30 minutes to an hour in the car. Driving is painful when you’re disabled. It’s exhausting AF when you have what we have. Molli doesn’t have the energy to drive so it falls to me. If you take three appointments, which are an hour long each + commute, I lose up to 9 hours of my work day in a week to those appointments. In a week where it’s 10 appointments, on average I lose 20 hours of my work time. So even if I was working full-time (which I’m not), I would lose HALF of my time available work time to making sure we’re getting the care that we all need. That means that even if I wasn’t also disabled and unable to hold standard or normal employment, I couldn’t anyways. Not with losing so much time to shuttling everyone around to various appointments. 

If anything is wrong with the house and requires repair people, contractors, etc., I have to research them, schedule them, etc. I get to juggle the bills, taxes, etc. 90% of the adult responsibilities fall on my shoulders. It’s no wonder I’m so exhausted and stressed out. 

How in the world can I write a novel or create art with so little available time, when I have so little spoons left after everything to even try? I do try, but that’s why I went from a successful budding career to…this. To occasional releases of work and a lot of blogging about how dangerous COVID is, how deadly and life-altering it is, which feels like screaming in a vacuum. You don’t have to be sickly to be struck down by this and find yourself jobless, career-less, and broke, yet too many people treat it like the cold–an inconvenience and nothing more.

BOTTOM LINE

We have enough money for a few more months to see if these new shots help us, but if they don’t, we will have to sell the house. If they don’t work, we have to try chemo medication next in hopes it will calm down our immune systems. See, that’s the odd thing about all of this. While ME/CFS exhausts us, so does MCAS—not because our body is weak, but because our body is fighting too hard. It turns the immune system on overdrive until our bodies are attacking every cell in our body. Every organ. People joke about needing to get COVID to make their immune system stronger but the joke’s on them. That’s what it does. But TOO much. Your body goes into overdrive and doesn’t shut off. 

You can’t get enough rest because your body never stops. 

These Xolair shots are supposed to make it stop some. If that doesn’t work, chemo meds should do the trick, but there’s a cost to that. Just ask anyone who’s ever had cancer. Speaking of, there are strong ties to folks having an increased risk of cancer post-COVID infection. It literally changes the body and damages everything. Ask me how I know. (It likely gave me my thyroid cancer.)

If none of this works, Molli will likely never work full-time (if at all) again, and I can’t even think about that right now as we won’t be able to afford life-saving medication for us, let alone the cats. Down that trail of thought leads darkness. It’s the stuff that lives in my nightmares and sometimes triggers my panic attacks.

Prior to this, I already had the struggle of making piece with my own permanent disability. With the fact that self-employment as a writer & artist would be the only type of work I’d ever be able to do again, as well as the knowledge that I would often need help at conventions. I’d made peace with the fact that Molli was cooking for me and some days, helping me dress. And then COVID hit.

I often have to do what I’d already discovered I couldn’t anymore, and it costs me. But what choice do I have? These things have to be done. This is why creating is hard right now. Just know I’m doing my very best, all things considered. So that’s our “typical” day or week in a nutshell.

And…of course, this doesn’t cover that all three cats came down suddenly with some communicable GI something. All three have explosive diarrhea (though Riley’s is finally clear after 1 week), which means we are doing massive amounts of laundry 4x a day, not to mention bathing cats (fun times) multiple times a day, and cleaning the litter boxes and the floor multiple times a day. We’re up at all hours to do all this so our sleep is shit (haha). We are exhausted on levels I didn’t know we could be and we were already exhausted. Today, we both broke down and cried at it all.

HOW TO HELP

Folks who know often ask what they can do to help. They offer to do our laundry, cook for us, clean, etc. We will be taking a few people up on some offers of help but really, the best thing you can do to help is this:

Recognize that the pandemic is not over and that you have a responsibility to protect others.

Some of you know what I’m about to say. Please don’t tune me out. I’m begging you.

If you are around people outside of your home, mask. Mask properly.

Wearing a mask isn’t about you. Yes, it can protect you (though the way some of ya’ll wear your loose masks, those masks aren’t doing much), but it’s about protecting others from you. See,  COVID is airborne. All you have to do to spread it is breathe. That’s right. Everyone needs to breathe. See the problem?

33% of folks with COVID show no symptoms and don’t know they have it or ever had it. What does that mean?

It means that you, unmasked, doing normal life stuff, could unknowingly have COVID, exhale on me, and kill me. Or Molli. Or someone’s grandma. Or the neighborhood kid down the street.

COVID doesn’t discriminate. Health people, unhealthy people, old people, young people, skinny people, fat people, it doesn’t care. Anyone can get it, and unmasked, you can give it to them.

Rapid tests aren’t good enough anymore. They often miss asymptomatic infections. Also, the more times you get COVID, the more likely you are to end up with Long COVID, especially “mild” infections. Don’t get complacent and think that your mild case was no big deal. We certainly can’t rely on the CDC and current administration to protect us and that means we have to save each other.

There is no treatment, cure, or prevention for Long COVID other than don’t get COVID.

So yes, if you really want to help Molli and me, wear your mask. Stop partaking in risky behavior. I don’t care that you want to “return to normal” and that you’re “tired” of wearing masks. I’m tired of being a recluse who’s watching my entire life, career, and loved one slowly waste away. 

If you care about others, you will mask so that no more people have to have our “typical” day.