Thread by @ExUtahSports

March 16, 2020. For some reason I took this photo. Odd bc I hate selfies. Next morning fell getting out of bed unable to breathe. Months later so ill my son had to leave & live with his mom.

Lost all: job, car, house. I live with my dad. I'm 49. #LongCovidAwarenessDay #cirs twitter.com/i/web/status/1…

I debated posting this reminder all day long. It's not a pleasant one. Wrote two books about this hell on Earth; I'd rather not be reminded of it at all. But I am every time I wake up and I can't move like my legs are stuck in quicksand.

When people tell you that you're full of it, that doesn't help matters. When people look at you weird while you're wheeling your motorized cart through the grocery store and you need help bagging your own damned groceries at self-checkout it's a helpless feeling hard to describe.

When your doctors tell you that your effing disability is only short-term--as if your disease is going to miraculously disappear in November it's a feeling that is hard to describe. It's a feeling that creates fear which causes my CIRS to flare up again.

I have been stuck down the same effing rabbit hole now since this stupid day. My team of 24 doctors tells me that if I gain enough weight there's a chance they can do the surgery necessary to repair my vagus nerve damage. It's literally the only thing they found was wrong so far.

Yet I'm on 11 different meds, five of which I must take on time, every day, for breathing, for walking, for talking, for living a very uneven, abnormal life. I've had one MaB for the one time that I tested positive and that was because it was literally a life-or-death situation.

If it's a good day I can work for about 3 hours on my writing [I still have a PT reporters job]; if it's a bad one I crash for 20 out of the 24 hours in a day. But I'm not looking for anyone's pity--I want a way out. It's the same reason I wrote those damned books. I want HELP.

I'm tired of being in this much pain from the nerve damage. I'm tired of not being able to do the things I used to do as a child behaviorist, as a college prep soccer coach--as a normal, functioning human fucking being. I'm just tired of being tired. And I'm tired of writing this

I just want to be able to talk normally to my kids again. I want to be an adult who feels like he has a purpose in life, isn't ridiculed by some, and treated like an infant by others. I just want to be able to lift my head up again, and feel like I matter. I'm sure I'm not alone.

I hope not. All I know is that when people talk to me I can't sort my words out in response. Every morning my dad issues simple commands with the victive that if I can't answer he's to call my care team ASAP. He did the same for my mom who died from a stroke last May.

I've had to work hard to get to this point where I can talk. Sometimes I can't control my bowels very well and have been on pump inhibitors since April 2020, steroids since June of that year. My beds elevated 30°; I wear mercury stockings 24/7 that cause fungal issues on my legs.

So I have infections tied to CIRS developed from inhaling mold in 2001. For some unknown reason I can't hold my face up for long. Drs suspect ministrokes but they don't know for sure. My family was kind to ensure they were vaxxed at Xmas. 1st time I've not been alone in 3 years.

When I was alone and couldn't talk I wrote what I saw. I had no other way to communicate with the outside world. Both books are under review at a major publisher [a decision is expected later this mo] but were self-published since no publishers were open.
amazon.com/stores/Brian-S…

I think I'm ready to wrap this whole thread. I don't have all the answers; hell if I did I wouldn't be writing this asking for help, crying out for a way out of this pain that I wake up with every morning in my legs, this gnawing sensation that at first made my legs go numb.

Now my tibias just ache and throb. Now I walk like a zombie around this sepia-tinged hellscape. Hell, we all do. I feel like Ed Reed walking around Bethune-Cookman knowing atrocious, despicable acts were being committed right under our very noses.

Right under our very noses. But how do you smell out a rat if you can't smell it? I don't know the answer to that question. But somebody does. Somebody holds the key to our very survival, that which was taken from us, sped up our rate of aging by 10 years, on average, 10 years!

It's enough to make a person go red with rage! blue with anger! Walk through streets demanding change, if only we had the strength for such a thing. Instead, we're bedbound, we're tired, we're strapped to bodies that don't function properly, we take meds to stay alive.

But just like Ed Reed said, there's pure evil in those buildings! EVIL! Hell, we've got evil among our own #longcovid PEOPLE!! People who aren't even who they claim to be, impostors. Scamming good people who are too ill to fight back! Hiding behind fake accounts and personas!!!

Hell I talked about these people in my 2nd book. It's enough to make one go mad knowing that these evil people would do such a thing, crank the machinery so tight that the mere action FORCES us all the way toward the back of the line! So I'm tired.

So when people ask me, hey, are you still advocating? Hell yes I'm advocating!! But the ones who truly ARE ill, they don't hide behind a fake persona, behind a fake account, behind some sense of entitlement. I don't know why they're doing this TO us--but it isn't helping us.

It didn't help us when an embarrassment of gofundmes overshadowed those who truly needed it. They actually DIED bc the marketplace was so oversaturated with scams and scumbags, yet I named them ALL in my damned book. Because it wasn't right. It still isn't. It never will be.

It wasnt right we uninsured got pushed to the back of the damned lines every time some new drug or treatment came out. We had no other choice but to lay down, cower inside of our homes, endure the abuse from the establishment. We may be/may have been trapped inside our own minds.

But I'll be DAMNED if these people get away with this scot free! So help me God I'll do EVERYTHING in my power to ensure these evil people see JUSTICE. So like I've done for the past 3 years bc my body is broken, tired, and my adrenaline is out of control I have to rest. 🛌 🙏