I have not shared much about my life with long covid, though no one can say that I’ve been quiet about it, but I have had a few people reach out with grattitude for sharing a tiny bit of LC life and so if it can help others, I’m here for it. My symptoms have been consistent but also consistently sporadic. This past weekend my tinnitus had suddenly returned for an extended episode this time and it had me very alarmed. I had almost forgotten what hell it was to live with for months on end. I didn’t tell anyone about it when it was at its worst last year because I think I was afraid of being gaslit or being a hypochondriac. Now it is a random occurrence, usually less than five minutes. This time it was a little over two hours. While many of my symptoms have waned in severity, some go away for days or weeks and then come back out of nowhere. It is annoying for sure, but imagine already having your life so limited by this viral persistence and having more symptoms suddenly and then not and so on.
I have more good days than bad now and for that I am very grateful. The bad days are really bad though. Taking a shower can feel herculean in exertion sometimes, but for many months it was every time. It is hard to stay motivated and want to start your day when you don’t know if you can even make it through the day without collapsing. I have had such great improvement lately that when these random symptom episodes occur it kind of hits me harder, even though I was used to them a few months ago. My whole-body pain isn’t as bad as it was just three months ago, but then Saturday it was so hard to even move. Sunday I felt great and was able to do laundry and make my bed and other chores as well as doing my nails. Sunday night though I had the worst episode of chills since the acute phase of my only Covid infection last year. Mind you it was 65 degrees outside, so warmer inside by a bit, and I had full body chills that felt like my bones were turning into ice. I checked my temperature three times, convinced I was sick again. Nope, no fever. I was bundled in my down-alternative comforter as well as my usual summer comforter, and I was absolutely freezing.
Insomnia is kind of the worst part, at least in its variance of type and severity. I can usually fall asleep fine, which is huge for someone who has had insomnia for over thirty years, but I seem to always wake up a couple of hours later and then getting back to sleep feels impossible. I wake up feeling as though I was physically ripped from the deepest state of pleasant unconsciousness and then WHAM I’m awake. I have tried all the things I am willing to (I am not fucking around with the Ambien walrus – if you have other suggestions not OTC please share), but this is definitely long covid related. Same with my digestive issues. I went off all of my supplements by accident but was actually feeling really good about it for about six weeks. I just started my probiotic again this morning and have now added a simple multi vitamin. I was taking 8 different supplements every morning for about six months. The first thing that I noticed that really helped was a mushroom supplement that I am convinced got rid of my tinnitus. I thought that the natokinese had gotten rid of my brain fog, but wouldn’t that have returned after stopping it? Hmm…
Because every symptom is not constant, it makes it tougher to support. I can’t say treat because there is no treatment for long covid yet. I do all I can to support my symptoms with what I have access to, knowing full well that the medical world is not yet ready to even approach it and will predictably dismiss it as mental health issues. Ugh! I have had to learn how to support myself through some pretty horrific health crises these last few years. Long covid made that even more clear, that I have to be the grown up, for myself. I am glad I live alone most of the time because the way I have embraced openly moaning and groaning and whining when I’m feeling terrible has really helped me keep my motivation to at least try to do things that are hard or painful. When your entire body is screaming in pain, I figure why not join the chorus?! It sucks when I’m in pain like that at work though, it doesn’t happen often anymore, but I can’t openly groan in the office. Ha-ha!
Living with long covid for fifteen months is no easy feat! Only 7% ever fully recover, and since this is a SARS related thing, many from the SARS1 epidemic are still suffering its effects. That is an upsetting fucking statistic. I am hopeful for the future, but that future seems to be getting further and further away as more and more millions are suffering from this virus’ effects. What occurred to me today, after reading some LC community folks posting about their current symptoms, was how my brain fog hasn’t come back. I don’t wanna jinx it, but sincerely, it is the most fucked up thing to not be able to trust your own brain. Sure, sometimes it was funny things like only shaving one leg and then going about my day as though it was normal. Other times I would be standing in my kitchen not knowing at all what I was doing before or after that moment. I struggled to carry conversation, my bestie can attest to that one, as my thoughts would suddenly evaporate mid sentences. It was so frustrating and felt physically terrible too. I don’t miss it one bit but I also didn’t realize how long it has been since that was a pretty regular occurrence for me.
The absolute worst is fatigue. Oh my gosh! THE FATIGUE! This isn’t tired or exhausted, this is medical grade collapse, or at least that’s what I call it. Add the body pain on top of it and you really start to struggle to even see the point in existing. Adding more symptoms on top of those and so on and so on…fifteen months later and I’m somehow still kickin’! When the heart palpitations first started I was scared af! I used a heart rate app and would get so annoyed every time my heart rate was normal because it did not feel normal. The body can get used to alot of shit you would neer imagine it could. Ask anyone with a chronic illness, most would love to have former versions of their current condition, especially if/when medical pros have let them down at every turn.
If you see someone you know to be chronically ill smiling or going about their life seemingly “okay”, trust that it is no small thing to a chronically ill person. We may be having a better day than usual and trying to take advantage before the next crash. We are often put in a position to tend to and even coddle the feelings of others if we express our truths or even share that we’re in pain at all. Please read that sentence again. Most people don’t want to hear that anyone isn’t feeling well, but if you haven’t been feeling well for years, they will treat you as if it is entirely your fault. They will suggest the most absurd things to “fix” the issues you have been suffering from and living with. Or straight up insisting you’re lying/faking, or the classic, “Other people have it so much worse!” which forces us into further isolation and makes us not trust people. People you think love and care for you will slip away from your life without warning, notice or apparent reason, but you’ll know deep down why. People quickly become uninterested when you don’t improve. They assume, wrongly, that you haven’t done all you can to get better. They have very little grasp of what the chronic part means when it comes to illness.
I have been incredibly fortunate to have a job and a boss that is empathetic and understanding and so I have been able to continue to house and feed myself through my illness. Had I worked anywhere else I am certain I would have been forced to live on the street. I am often in disbelief at the good fortune I have had in my job the last several years. I’m an office manager, which is a lot of desk work, but it also requires that I get up and run around a lot. I have really struggled with both aspects of my job since getting covid. I did get my infection at work, from a teammate. I had taken off my mask for all of 2 minutes to drink some water, he didn’t know he was infected and had only met up outdoors with family. It takes literal seconds to become infected and the longer your exposure the more viral load you are taking on. There is no mild covid. Your initial symptoms through the acute phase are your body’s immune response in full battle mode. Many who have had no symptoms, asymptomatics cases are over 60% and the cause of most spread (in my opinion), or very “mild” symptoms are due to a lack of immune response. Some have called those with more severe symptoms as having a “loud immune system”.
I have had people insist I cannot have long covid because I haven’t been diagnosed by a doctor. If you know anything about covid, regular or long, you know that doctors don’t know shit! Not only do they not know shit, they don’t want to know! They will insist you have anxiety or psychosis and will tell you loudly and unmasked every time! The truth of my long covid is that I have far less anxiety than I did before my infection, I can’t explain why, but it is true for me. Going to any medical setting right now is more dangerous to my health than not seeking medical care. The medical industry has abandoned all sense and reason, I refuse to place myself in more danger of further and worse infection from a deadly and disabling pathogen in order to get an official diagnosis. Long covid has a set of symptoms that are pretty core and standard to those who have it, but most of us have a bunch of other symptoms due to our unique and individual systems. I knew about six weeks after my symptoms started to come back after the acute phase of the infection that I had long covid.
If you have read this far, I beg of you, wear a N95/KN95 mask or better (P100 and others exist!) any time you’re around other humans. The majority of people are either grossly misinformed or are operating on information from 2020. We are no longer living in 2020 and the current variants of SARS2/Covid19 are nothing like it was then. We must adapt to our current reality to survive. SARS2 is a vascular virus that damages all organs, but seems to specifically enjoy attacking our brains. It can cause cancer cells to reactivate, diabetes, hair loss, reproductive issues and so so much more. If you are a fat bodied individual, you already know how we get treated in healthcare settings. I promise you that this will not improve if you get covid or long covid. Each infection increases your chances of getting long covid by 10x. Like, for real, don’t fuck around because you will find out! Oh and our pets are getting it, passing it, and dying from it too. I cannot help but wonder if my puggo’s sudden illness and decline was somehow related to covid (my only infection was almost a year later).
Please be safe, stay smart, stay masked! Get your booster shots, the new Novavax formulated for the newest variants, gave me ZERO SIDE EFFECTS! I had to pay out of pocket, but it was worth it for me. I hope more people will speak up and out about this information, but unfortunately I know that most people are not able to actually listen to it. If you have questions or seeking resources for covid related things, please leave a comment or email me, I will respond. Take care.
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I’m here for realness and sincerity, honesty and vulnerability, I’m here for the good and juicy bits of life that shine for me when I know I’m heading in the right direction.
Rad Fatty Love to ALL,
<3
S
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