Help Amy Recover from Long Covid and Severe MECFS

Hi, my name is Amy.

I was in great health until I got Covid-19 in April 2020, at the age of 23. I was taking precautions -- the whole city was in lockdown -- but my boyfriend at the time cheated on me, seeing multiple women behind my back despite promising to isolate to keep me safe. One of these women had a confirmed COVID infection, which he then passed on to me.

He recovered fine. I didn't. (If you're wondering, the last time I heard, my ex-boyfriend remains in great health and still thinks COVID is a hoax.)

My health declined from spring 2020 onward, with persistent migraines and fatigue, but it worsened significantly in summer of 2021 when I added cardio to my already intense lifting workout regimen. I started getting weaker and weaker and began experiencing classic post-exertional malaise (PEM) and the symptoms of Postural Orthostatic Tachycardia Syndrome (POTS). I went from being able to knock out 10 consecutive chin-ups and lift 300 lbs in a barbell hip thrust (the glutes are the strongest muscles in the human body) — to struggling to walk a few blocks.

I did my research, though, and started resting and pacing, with hopes that I would recover and be back in the gym in a few months. But in December 2021, I took probiotics combined with medicine (GCMAF), which was prescribed by a prominent ME/CFS specialist, whom I trusted. I should not have trusted him. Because this caused me to descend from mild/moderate to bedbound in the space of a week—a worsening that I still have not recovered from.

At this point I was forced to move back home with my parents, as I was unable to care for myself. I have now been 95% bedbound for over three years, since December 2021.

I am suffering tremendously every day. I live with horrible symptoms that include severe PEM, POTS, MCAS, constant tinnitus, brain fog, heat and cold intolerance, GI symptoms, malabsorption, migraines, and many more. I am no longer able to watch television. I must fight every day to not worsen even further from over-exertion. I work very hard to pace myself and limit the allotments of time I spend on the phone or reading. Over the summers of 2023 and 2024 I was significantly better and could do several hours a day of reading/writing/phone and computer usage a day, but still remained mostly bedbound due to severe POTS. I did manage to get outside a few times (see pic below).

Since then, at the time of writing this, I have worsened again and must now spend upwards of 20 hours a day in total sensory isolation.

The purpose of this GoFundMe is to raise funds to help me have more autonomy. I am currently reliant on my parents for housing, food, daily care, and many of my medical costs (besides, of course, the supplements, doctors, and medical treatments that they do not agree with). Unfortunately, I feel that my father in particular does not believe in my ME/CFS diagnosis (which I received from three separate doctors). He has stated that I am “lying in bed all day because [I am] afraid to grow up and get a job” and that I have my mother, whom I rely on to bring me food and water, “wrapped around [my] finger.” He has sarcastically referred to my mother as “waiting on [me].” The last time my mom wasn’t home and I asked him for water, he refused to bring it upstairs to me—even when he came upstairs a couple minutes later, it was without the water. I feel that he believes I am perfectly capable of going up and down the stairs as many times as I please.

One of the worst parts is that my (semi-retired) parents may be sending me to a care home in the not-so-distant future. My mother herself has said blatantly, numerous times: “If you can’t make it to the bathroom anymore, I’m putting you in a nursing home." I dread going to a nursing home in my twenties or thirties, because it is very unlikely that a nursing home will understand what ME/CFS is or how to help me. There, most likely …

- my MCAS and AIP dietary restrictions will not be respected and I will be forced to either go hungry, or eat foods that drastically worsen my condition

- there will be no understanding of the sensory overstimulation problem in ME/CFS; the noise, light, and ceaseless stimulation would cause me to crash constantly

- I will be surrounded by strangers, instead of my beloved dog Lily and my mother (who isn’t perfect but whom I definitely love and feel more comfortable with than with nursing home staff).

- due to, again, the lack of understanding around ME/CFS in nursing homes, I would likely be forced to do physical activity. How many nursing homes or assisted living facilities have knowledge of severe ME/CFS? Not many. Probably none, actually. Remember Karina Hansen? I do.

- would it be a snazzy nursing home? Doubt it. Given the fact that my mother’s money is going mostly to her retirement needs (her father just turned 98, so we are a long-living family), it would probably be a shitty facility that they can shove me in so that I am “out of sight, out of mind.” My family is a real sweep-it-under-the-rug type family, and I really do not want it to be me who is swept under the rug!

With all that I am dealing with, I am under tremendous stress on top of all my life-altering symptoms, which is only worsening my ME/CFS. I hope that gaining more autonomy and some financial independence will relieve some of the stress by allowing me to be in control of my life, my rights, my body and my healthcare choices. All funds will go directly to supplements, foods I can tolerate, medical care costs, and other than that, building a bank account so that hopefully, eventually, I will be able to live independently again.

Thank you from the bottom of my heart for any help you can give me.

Amy

(a rare outing with Lily, in the summer)