Long Covid: Seventy Two Hours
There's a fine line between constantly bitching about something and reporting what's accurate in my world. Unfortunately, the later looks more like the former.
Aside from my Long Covid "healing journey" which is beginning to sound like a ridiculous phrase or an oxymoron (aka Jumbo Shrimp, Army Intelligence, or the TFG claiming to care about the average American) I try and maintain a shred of hope and dignity along the way. Unfortunately, puppies and rainbows and progress aren't exactly a thing lately.
At one point in my journey early on, I'd kindly asked (notably family members) to quit asking me, "how are you feeling...are you doing any better?" Mainly because this thing has moved at a glacier pace without improvements and as someone with "conflict avoider" tendencies, sometimes I just don't want to talk about it. Going to a larger event like a wedding where I'd see a bunch of people I haven't seen in awhile gives me angst as I get tired about talking how tired I am.
The fact is I'm unemployed, on disability, as someone with a chronic illness.
Perhaps to share insight into the world of someone with Long Covid, it would be helpful to share seventy two hours of the life of someone with Long Covid.
Wanting to maintain some level of normalcy, I'd agreed to meet with a few good friends including a good friend (Beth) from High School, a mutual friend (Cynthia,) my wife, sister and her husband for dinner. Evenings are my worst and sadly I typically refrain from doing anything at night but that's not entirely fair to my wife either as she's bearing the brunt of "income earner" and (even before getting sick,) I'd joke that there won't be a third Mrs. Godwin.
The day leading up to dinner was "laying low" as overactivity would have cancelled or lead to a miserable dinner--the last time we'd met when Beth was in town from Singapore, my body was raging the moment I'd sat down for dinner in the restaurant and I knew I was not a fun person to be around.
Symptoms were tame on Saturday, (or am I just getting used to this?) I mainly felt the fluish body aches (arms sensitive to the touch) throughout the day. That evening, I was closest to my normal self in that type of social situation I'd seen in awhile. To the point that I wondered, "am I turning the corner on this thing?" I'd later have "Lucy" pull the football out from under "Charlie Brown."
Regardless, I went into the night feeling it was a better than average day. I was able to take some sleep medication before bed as the last few weeks and months my sleep has been horrific--mainly with the neuro issues (restless legs, burning feet, and chest spasms.) Nighttime is also when evil thoughts enter my mind when I constantly look at the hours go by without falling asleep.
The one consistent thing with long Covid is that if you overdo it--even slightly, your next day you will pay for it--medically known as PEM (or post exertion malaise.) That was the case here as all the long Covid "devil knobs" were turned up on Sunday; shortness of breath, body aches, fatigue, and "nutty things" going on with my legs. I fell down the stairs for the second time in the last few months as my equilibrium is off. Last time resulted in a broken toe, this time was a contusion (goose egg) and bruise on my forearm.
Wanting normalcy and some fresh air, I took the twin dogs for a walk. Breathing was a major challenge which still feels alien to me as a previous decent/high-performing marathon runner. A walk around the block should not have me heading to the couch.
With a POTS tilt table test planned for Tuesday, I couldn't take any medication or supplements for 48 hours prior--that meant no sleep help. Depression was thick as I tried to slip into sleep as I turned on our Bliss Lights stars on the ceiling (yes, just like you'd try and get a child to sleep) along with a Tidal (we bailed on Spotify due to the gross and deadly podcast drivel from Joe Rogan) on our SONOS system. Ten, eleven, midnight, one AM, two AM all passed without falling asleep. Horrible thoughts entered my head;
"Will my life ever come back to what it was?"
"Why would my wife still be with me?"
"Will I ever get my brain back?"
Most of the answers spiraled me into a deeper depression abyss. I should point out that I think about mortality, but I'm too much of a coward and would not want to ruin other's lives (notably my wife and kids) by intentionally cutting my life short. Sorry for the brutal honesty, but this blog is cheaper than therapy.)
My week started with "one battery square" as no sleep really puts me "behind the eight ball" for my day as I'm sleep deprived on top of exhaustion. As I shared in my last post, "Pete, Why Did you Sell My Mortgage," (cue the Boomtown Rats' "I don't like Mondays) I received my third letter from BSI Financial Services (fancy name for a third rate collection agency) threatening Foreclosure on my house. You can read the other post, but short version is I applied for CARES Act Forbearance on our loan with Universal Lending who promptly sold our "paper" to BSI. "Thank you sir, may I have another!"
My brain fog was especially thick on Monday and I've been pursuing a holistic approach to working on the center of my neuro issues--the brain, with Braincode centers. Hard to explain but fundamentally getting a "baseline" of brain function that would be followed by treatments to recondition the brain. Makes some sense as one of the Dr.s at Mayo Clinic described "long covid as the brain sends signals to the body with "stress" that's not necessarily there. Think of it as this;a small town where ambulances and fire trucks are sent out to squash fires and floods and mayhem but those maladies aren't there...but those trucks wind up creating the issues in the process.
Anyhow, strongly considering it, but it isn't cheap. A common dilemma among people with Long Covid--loss of income combined with high cost of medical care.
In terms of symptoms, all the "knobs" were turned up again which sent me to bed in the afternoon to curb the body aches, fatigue, and severe shortness of breath. In terms of sleep, Sunday night my body was hot--not in the Instagram influencer kinda way, but in the body temperature regulation sense. Monday night, I couldn't get warm so I used a heating pad and all the blankets. I woke up dripping in sweat. Sleep was better--perhaps a few hours of sleep before I headed out to National Jewish Health for my POTS Tilt Table test.
Mental health remained poor on Monday as I was off the anti-depressants (as required for the test) or perhaps it was from watching Netflix' "Windfall" and "Deep Water" (spoiler alert--neither are comedies or healthy marriage shows) over the weekend. In the case of my Windfall metaphor, Jason Segel is the Covid monster that comes to visit Jesse Plemons (me as a not nearly as rich but equally rotund Jesse,) and my wife taking a break from "Emily in Paris" to star as my technology wife (Lily Collins.)
Perhaps this gives you a better idea of the daily life and struggles of someone with Long Covid. Mine is one of the worst in terms of length (now 26 months,) and severity, but honestly, mine is one of the better ones as others have not survived the depression aspects and are completely wiped out financially struggling with loss of jobs/careers and inability to get (even) Social Security disability.
Sorry...I know this is a tough read, but it's a day in the life. Tonight? (written a week ago) Rallying to meet my daughter for her birthday dinner. She (and my wife, and boys) keep me going.