Chronic pain and fatigue and why I really don’t want anything to do with COVID
February 15, 2022
Everyone handwaving COVID and omicron makes me want to bite something. It’s “just a cold”, it’s “no big deal”. Except for a lot of people, it causes Long COVID and there is not one thing in the list of Long COVID symptoms that makes me say yes sure sign me up! That’s because I know better – I already live with most of the COVID and Long COVID symptoms. In a nutshell, it sucks.
I talk about fatigue here a lot these. I talked about chronic pain here a lot over the years. I’ve lost a LOT to my chronic pain. My ability to enjoy most parts of life. My ability to function completely independently. My favorite hobbies in the world. My ability to care for myself. My ability to sleep. My ability to trust healthcare can help with anything. I was gaslit about my pain for over 20 years because they didn’t have the tools or training to help me.
I didn’t realize how much I was losing to my chronic fatigue, which I always chalked up to being tired of being in so much pain all the time – it’s exhausting walking around feeling like your entire body is on fire! It’s exhausting to experience inflammation in every joint. It was logical! After all if you’re twisted into knots with tension from pain, that’s tiring! Turns out that wasn’t the only problem.
Over the past two years, as my chronic pain baselines started to get lower, I noticed that my fatigue continued to get worse. That didn’t make sense. I’m not at all cured and I still hurt every minute of every day, but it’s less than before. Before was the equivalent of having various body parts clamped into a vise, cranked tight until just before you lose feeling, all the time. Now it’s more like it’s cranked halfway there. There’s a significant difference. Why is my fatigue still so deep?
I’m not just tired. Though, honestly, I don’t clearly remember how it feels for an adult human to have energy, I have an intellectual recollection. Once upon a time, if I could sleep, I’d wake up and feel like I’d slept. Not like I’d gone twenty rounds in a boxing ring. In the before times, if I ran to catch the bus, I’d huff for a while, catch my breath, and then feel ok enough to walk to my next stop. If I went for a run, I’d feel the burn, walk for a bit and then have a second wind to run back home.
That’s not how it works with chronic fatigue. When I sleep, I wake up feeling like I just hit pause on my downward spiral. I didn’t recharge or reset, I just slowed down the drain. When I walk or run, if I feel good enough, and I hit breathlessness, that’s where I’m stuck the rest of the day. But if I feel good, I have to take advantage of it because it’s going to go away no matter what I do. I can’t conserve it for later. There is no later for that very momentary bit of bliss where I almost feel like a human. If I choose to do an activity on the weekend, that’s the only one I get. I have to factor in a two hour rest period after the activity in hopes that will let me stabilize my tiredness enough to continue to function. If I’m fool enough to schedule two activities in a weekend, I will be scraping the bottom of the barrel for at least a week, probably two. If someone is a big enough jerk to expose me to their “just a cold” (a real cold), I will struggle to get back on track for six weeks and I will hold a grudge.
I start each day with the weight of an anvil on my chest. Bonus mornings bring with it 50 pound weights on each limb. Even worse mornings include all the above benefits PLUS the feeling of having been hollowed out so I could blow away with the next little breeze. Lucky I have those weights weighing me down! That’s how my day STARTS before I plunge into child caretaking, making breakfast, school dropoff, dog walking, more childcare, work, more childcare, more work, school pickup, more work and dog walking and household management and dealing with dinner and bath and bedtime or more work, then bedtime. I am (non sarcastically now) very lucky that PiC and I share the shareable load a lot without ever having to ask – he’s a fully capable responsible adult who wouldn’t dream of leaving it all to me. He always takes as much of the physical load as possible to spare me and I do much of the planning and logistics wrangling. But half of too much work is still a ton of work and I never start any day with a full tank of gas. If I’m particularly well off, I start with half.
All this to say: I DO NOT WANT COVID. I’ll never understand how people can blithely dismiss the risk to others if they had an easy experience with it. “We had it and we were fine, why vaccinate?” I hear way too often. I knew people were selfish but this is a PARTICULARLY awful kind of selfish that truly doesn’t care if it destroys lives.
In any case, I have no interest in arguing with those people. I’m not going to change their minds and my energy is far too precious to throw away on knuckleheads.
On the chronic fatigue front, I have been getting some medical guidance on managing it a bit better than I have been.
I used to take magnesium for restless leg symptoms I’d get now and again and a Vit B complex. We have added Vit D, zinc, coQ10, omega3 fatty acids, and Vit C. My doc also prescribed a medication recommended for fatigue as an off label use for days when I’m flattened and really cannot afford to be. It becomes ineffective if taken it on a regular schedule so it’s prescribed as “take on random mornings as needed.” Hilariously my doc apologized that the prescription sounded so weird but that’s exactly what I wanted. I’m not looking for a habitual medication-based fix, mainly because I know there isn’t one short of going with hard drugs (I hear that’s one reason cocaine was so popular and I get it boy do I get it but also boy do I not want to get addicted to cocaine), I just need some help to survive on the worst days. For the days that range between the worst and the best, I’m relying on lifestyle-based changes.
In some ways the lifestyle changes are a disappointing route to take. The major theme is don’t do the things. Don’t do all of them. Don’t do most of them. Only do the ones you can do without hitting your hollowed out, point of collapse, feeling.
You know how little that leaves me? With MAYBE one fun thing per week for up to two hours. Sometimes I don’t even feel up to that much.
It’s a hell of a way to live but I’m still more fortunate than most and I do want to make the most of what time I have. That doesn’t mean I’m willing to gamble with what I do have in the lottery of “will it be ‘mild’ COVID with long lasting effects or not?” I truly don’t understand people who blithely assume everything will be fine if they get it and that they’ll get great medical care if they need it. That has not been the experience of many people with long term illness or disability.
I don’t have any grand conclusion because I’m still living this chronic life. But I refuse to voluntarily make it worse!
Thank you for pulling the curtain back to let us see what it’s like on the inside of your body. I’m sorry it’s like that, as lame as that sounds. And I’m sorry (and angry, actually) that there are some segments of our population who don’t understand that there are vulnerable people out there who would be really, really negatively impacted by getting COVID, assuming they survive it.
Sincerity is never a bad thing. <3 Thank you. And as much as I take it personally, I know I don't have it nearly as bad as many other vulnerable people and my heart goes out to them.
So one of my colleagues who *never wears a mask* emailed to let all of us who were in the meeting he ran on Monday that he has Covid. His wife had been feeling sick since Sunday, but only tested positive on Tuesday, so I guess he didn’t see the need to mask or test or anything that could potentially protect people. He also sat next to me completely unmasked at a seminar last week (I was masked). Fortunately that was last week and fortunately I only zoom into meetings where my colleagues are unmasked. His office was also giving out valentines treats on Monday.
Our department secretary’s husband will die if he gets Covid. He’s waiting for an organ transplant. She has signs in her office requiring masks (that are probably against state law) and masks religiously, but people go in there unmasked anyway. She has to go to the department meetings where everyone is eating in person, though she never eats so she can keep her mask on.
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I hate these people so much.
With the exception of in-person school(which feels like a big exception), we are still staying home. We also still wear masks when we leave our own property. Everyone is as vaccinated as they can be, and I’m grateful to see the numbers dropping, but– they aren’t as low as they need to be for me to feel okay.
My kid got an invitation to a birthday party that took place last weekend. I was hoping to fly under the radar with the “no,” but it got talked about among the kids in the week leading up, because the whole class was invited. I had to talk with her about how and why I said “no.” She was understanding, but it sucked having an invitation and having to turn it down. The invitation was sent in January. If you are someone in our area who looked around in January and said, “hey, let’s plan an in-person kids’ party!” I already know enough about your probable vaccination/mask beliefs to know that I have to disappoint my kid and say no.
And the crummy vindication to turning it down is that we got a classroom exposure notification related to someone who was last in class on Monday. Two kids have been out, one of whom was the birthday kid.
We still mask everywhere too.
I’m sorry for your kiddo. Even when they understand, I know it’s hard to be the no on an invite like that. Given how people have been handling things this whole time, I would have drawn similar conclusions unless I was very close to them and had a transparent conversation about the whole thing.
Terrible vindication but vindication nonetheless.
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Yeah, one of my friends/contract pet sitting employees is highly immunocompromised and has had chronic pain as well since she was in her mid-teens. She has now had Covid twice because we live in Texas and fuck people. She has to nap between every set of pet sitting jobs and still has random days that she has to skip altogether because her blood pressure goes wonky (POTS, EDS, and something else I forget the name of).
She had bad (worst) days occasionally before, but now it’s much more often.
Covid isn’t a joke and our most vulnerable really need everyone to do just the very basic step of wearing masks and staying home if they have any symptom at all. That would have probably saved her from October and December Covid…
I’m so so mad on her behalf. That’s exactly the thing that I dread, a worsening of already shitty symptoms and conditions, and exactly the thing that healthy and abled people just apparently do not care about. It’s so infuriating.