For those of you not familiar with the medical term “fatigue,” let me describe it. I experienced it while having mono, undergoing chemotherapy, and again now with #LongCovid.
Think back to a time when you were as tired as you’ve ever been. Not sleepy, but completely physically exhausted, to where you couldn’t wait to get into bed.
Now imagine that you’re in bed, but you don’t feel as if you’ve laid down yet. You’re still that tired. Hours pass. Maybe you sleep all night. You wake up, and you’re still that exhausted. The exhaustion is deep in your bones, and nothing can relieve it.
You can’t think straight. You can’t hold a conversation. You can’t read because holding a book or tablet is too tiring and you can’t focus anyway. You can’t watch anything.
You don’t let yourself cry because then you’d have to blow your nose afterwards, and you’re too tired to do that.
Maybe in a day or two you start feeling as if you can get up and do something, so you tackle the most urgent thing. Or you get a burst of adrenaline and manage to deal with a crisis. Then you’re back to being that exhausted. It goes on for days, or weeks, or months.
You feel as if you should just make yourself exercise a little, and then it’ll get better. You do something small, like a walk. Or you get online for a couple of rousing discussions. The next morning, you wake up exhausted again. You overdid it. Of course you hide this from your friends and colleagues, because nobody wants to hear the same thing every day: “I’m completely exhausted.”
This is what millions of people with #LongCovid are experiencing, and we don’t know yet how to treat it or when it will end.
got infected with #COVID19 most likely in the hospital while getting #chemo. was in 6th week of twelve. had a two week stoppage to recoup but, nope, now i have #LongCOVID and it's so bad they had to change my infusion because it triggered ANAPHYLAXIS.
people do not get the immunological angle of #COVID: if it doesn't kill you, it will maim you. (which, btw, was part of Nietzsche's point but since nobody really reads his books... anyways.)
am half bald, lost most of my eyebrows, have no eyelashes left, am about 40 lbs overweight and paler than death but i did it, AM DONE WITH #CHEMO AND I GOT TO RING THAT FUCKING BELL!!!
next up: radiation and a year of immunotherapy. but for now am greatful. it could have been worse after landing in the emergency room TWICE, once for #COVID19, the other for a blood clot that also had me a week in the hospital.
i rang that bell with my sons, and i got to say with my whole chest, #fuckCancer.
UPDATE: The CDC just updated its COVID wastewater data.
COVID wastewater levels continue to rise, exceeding levels at the same time last year. COVID wastewater levels in the U.S. are at their highest since Omicron in 2021-22.
RELATED: this is a thread about my experience with #chemo after getting sick with #COVID19 almost a month ago. the fatigue has affected my ability to walk unassisted. had to ask the doctors to prescribe me a cane. am here with a stage1 cancer that am supposed to survive but now my chances are in danger due to COVID19
so am using a cane these days after being unable to walk a few steps w/o fatigue or vertigo. am happy as it's what i need to get better from #cancer.
but the excitement of walking to my new oncologist's office, which is at a subway entrance, was squashed by Hochul deploying armed Nat'l Guards in our subways. that means cops are everywhere in the area.
cops kill the disabled at alarming rates. am now a disabled BIPoC.
since 9/11 am almost always stopped on account of either looking Arab or having an incorrectly sounding Arab name (Sabater is shoemaker in Català).
so now that i have no hair thanks to #cancer, i wear a head scarf. so not only am i looking MORE Arab. now that i use a cane thanks to #COVID19 and #chemo,
am also being surveilled for a potential weapon.
that's exactly what happened when i went to a store next door my oncologist.
Has anyone got any chemo survival tips? I've got my notebook and several pens, my puzzle book, a bottle of water and an extra jumper, and a cool cap. What else do I need? Trying to turn this into a positive experience. #breastcancer#chemo
what will it take for Americans to treat #HealthCare as a Human Right and not a commodity?
someone cancelled my #chemo and didn't think to tell me. what's worse? the hospital doesn't have a protocol for dealing with these kinds of screw ups beyond a 'sorry.'
it's not the in-take clerk's fault that i had to demand they pay for my ride back home because i cannot take mass transit as a #cancer patient. it's the job of the administration to foresee these errors and have a contingency plan. /1
Getting #chemo left me w/ #ChemoBrain. Very often, specific words feel elusive, like they're in my mind but I can't grab them. I have to re-read sentences for comprehension.
Others dismiss my symptoms as typical of aging, but I'm in my 40s, far from elderly.
The #BrainFog of #LongCovid reminds me of chemo brain. Now if I mention chemo brain, others say, "Oh yes, I have that too, we're just getting older!"
Somehow they've normalized cognitive decline & don't consider it might be long covid. 🤷🏻♀️
When my hair fell out from #chemo, I packed away all my hair care products and accessories. Two years later most have been recalled to service, but I couldn't find the hair-ties! Hundreds of them, huddled together in a too-secure location, while Mr Willoughby and I fought for custody of the two hair-ties and one head-band I'd found in the car.
Clearing out some shelves this week ... miracle! Hair-tie stash unlocked! My babies!
IN OTHER NEWS #chemo was bound to do a number on my immune system but then came #COVID19 and it's been a double doozie on my body.
but here's some anecdata: THING1 got me some lactose free choco milk cuz I thought it would help with my dwindling appetite.
nope.
started wheezing and coughing within minutes. even as "lactose free" something in the milk (and i know it's not the chocolate) triggered a response. so i backed off for a couple of days. guess what happened?
am afrocarib, so i know my cow-dairy issues (which, btw, i don't have with goat milk products like Manchego cheese).
but am flabbergasted by how fast it triggers my asthma and all the related symptoms; which also are symptoms of #LongCOVID but not necessarily of #chemo.
so here's what i wonder: could LC19 on some people be the consequence of allergic reactions they don't know they have?
we need work done on the connection of allergies and COVID.
i had 3 anaphylactic reactions, at the beginning of #chemo (MD had to change the infusion) and they did a number on my stomach and on what i could eat: eggs, cow milk, wheat, unfermented soy (aka edamame, soy milk and flour; tofu and other fermented soy products are ok).
i think i have eaten shakshouka once and this one looks yummy; but am so afraid of eating anything that made me sick during chemo.
so, today was my first day of #radiation therapy (for the new, breast #cancer). was not prepared for the itchiness and sweat of a radioactive boob.
had to get a tub of Aquaphor. apparently, should've been using that all throughout #chemo & my crocodile skin as well.
been moisturizing with almond oil like my life depends on it, but my skin seems to absorb this vaseliney concoction like it were the last drop of water in the desert.
the one thing that has kept me going these past few #chemo weeks, has been banana smoothies i was making with a vegan pea protein shake they gave me at the hospital (during my last hospitalization for a blood clot).
ran out of those little shakes, so am making them with Oat milk. they really make my day! #chemo has done a number on my stomach & appetite but the smoothies are like a little blanket of love for my tummy.
IN OTHER NEWS
it's 1:56, Friday morning and am up because it's still the Thursday of my #chemo and got ultra pumped with steroids.
#COVID19 did do a number on me, immunologically speaking. this was the second session since i got infected and it was the 2nd anaphylactic reaction i got from the chemo solution.
the day started not so good because i don't look like myself. my face is swollen, gained more weight, can't walk unassisted due to fatigue and am losing my hair. #fuckCancer indeed.
IN OTHER NEWS
washed what's left of my hair and no hairs ended up in my hands. i guess am on my way to recovering from #chemo. can't wait to have my eyebrows back. also, #fuckCancer
🧵 (1/2) TODAY IS THE 10TH ANNIVERSARY OF MY MOTHER'S DEATH.
She was told she had "Stage 3 malignant #cancer" and given #Chemo. Her doctor didn't do ANY follow-up between treatments, which resulted in severe pneumonia and being rushed to the hospital.
The hospital screwed up, resulting in a collapsed lung after only 1 week.
3 days after that, she went into Cardiac Arrest. The collapsed lung hindered #CPR and left her a vegetable for 9 months.
today was the first time i went out to a food market in weeks.
crowding wasn't that bad but, JFC #COVID19#fatigue is real. i was just getting the hang of managing my #cancer#chemo fatigue. now this has made it worse.
IN OTHER NEWS
yesterday was the first thursday in months that i had no #chemo and i today feel like a ran a marathon. went to bed earlyish and have spent most of the day shlumpped. #radiation starts soon but am reckoning how traumatic my #cancer therapy has been so far. my body knows it and it’s like i can finally relax.
at some point we have to talk about how traumatic health care can be ―even if you have the some of the best doctors taking care of you.
BTW #COVID19 delayed my #chemo, so we cancelled our annual Dim Sum shenanigans with friends.
i did go out the other day, but TBH am even more paranoid about any kind of infection, #flu#theCold whatever since ending in the emergency room.
so even though my sons are here, it's been a very #sociallyDistant holiday season since turkey day; but my chosen family understands and that makes me happy.
Y’ALL
but for the allergic reaction to that lotion, today is another #chemo#fuckCancer win! no acid reflux, no stomach pains, no running to the bathroom a kabillion times a day. I GOT THIS 🥳