Episode 1
Autoimmunity, A Life Sentence PART I
This episode is part I of my medical history where I narrate the painful story of being diagnosed at a young age with an autoimmune disorder, and how it has shaped me, my days, and the story of my life.
This is the first time I have really talked about it more than running it in my head as if I’m telling my person, whom I have never met. I talk about the painful confusing period until I was diagnosed, the shock of being diagnosed with a lifelong, incurable autoimmune disease, the struggles to continue with life instead of running away, the way my disease comes for me and my life over and over again, how I rebuild my body, mind and life each time using a painstaking process of self-help all the way up to everything I had ever built being taken away from me in 2020 when an ugly chronic fatigue took over my body.
I also talk about where I have been the last 5 years since I disappeared from most peoples’ lives in the latest installation of my disease taking me out, why I am starting this podcast featuring conversations on chronic and mental health improvement mixed with tons of fun and joy, what you might get out of it, and why this combination is important to me and to this podcast.
The medical history part of this episode is specifically meant to be something me and my guests can refer back to in future episodes instead of starting from scratch.
In this episode, you can learn:
- A little bit of who I am, what I’ve been through, and why I’m starting this podcast
- What it feels like to be diagnosed with and live with an autoimmune disorder and how we fight to survive, even thrive
- Managing joint pain, atrophy, physical therapy, rehab and how it all feels
- Building a process for yourself to fight back and compete against chronic illness
- Using mediation, breathing exercises, yoga, running, physical therapy in a process to rebuild your body and mind, and adapting this process
- The toll chronic pain and rehab can take on your mental health and joy
- Taking your shot(s) when you have the opportunity to do so
I hope this episode gives you some company and you learn a little something and feel a little something, and smile here and there too.
I hope this show is a good friend to you in a world where joy is in short supply and where we all need all the help we can get in getting better, being better, and making and chasing our dreams.
Have fun, have joy!
-Amrit Bandy
00:00 Intro
00:35 Welcome to The Bandying Show (and Bandy)
02:18 What I I want this podcast to be, and thoughts on joy
05:35 Where have I been these last 5 years?
06:46 Let's get started
07:35 My Story of being diagnosed with an Autoimmune disorder (2003-2004)
13:05 Trying to rebuild my life instead of running away all the way up to crashing (2005-2012)
15:40 What atrophy can do to your body
16:47 A new process and a new life all the way up to disappearing again (2013-2020)
21:22 The toll of pain and rehab on the body and mind, but the joy of a fuller life
23:23 Enter Chronic Fatigue
Transcript
Welcome to the Bandying
Speaker:Show, episode one.
Speaker:Autoimmunity a life sentence.
Speaker:Womp womp For the longest time, I
Speaker:didn't know how to spell womp womp
Speaker:and used to spell it, wah wah and
Speaker:finding out the correct spelling
Speaker:was absolutely life changing.
Speaker:If you're listening you know that my name
Speaker:is Amrit Bandy hence the Bandying show.
Speaker:Bandy is short for my last name,
Speaker:Bandyopadhyay which I sometimes
Speaker:say is the long name that goes on
Speaker:forever, or the name that begins
Speaker:in band and ends in yay I don't
Speaker:expect anybody to be able to say it.
Speaker:I'm also not interested in anybody
Speaker:taking their shot at it and looking
Speaker:at me like, did I do a good job?
Speaker:You probably did not.
Speaker:My first name is pronounced Um-rith But
Speaker:when people get this two syllable name
Speaker:wrong, I sometimes playfully used to
Speaker:say it's like um as in umbrella rith
Speaker:rhymes with sith But recently some asshat
Speaker:couldn't help saying, then why don't you
Speaker:spell it like umbrella For which I had
Speaker:to go all American and say it's spelled
Speaker:and pronounced, um, like in America.
Speaker:And then I had to go all British and
Speaker:use the expression, which I think
Speaker:goes, you are the weakest link.
Speaker:Fuck off.
Speaker:Well, I am starting a podcast,
Speaker:or at least I think I am, but
Speaker:I've learned the hard way.
Speaker:If you wanna make God
Speaker:laugh, announce your plans.
Speaker:Thank God I'm not religious.
Speaker:In fact, the only lie I've ever told on a
Speaker:dating app, in my first dating profile,
Speaker:I selected spiritual, not religious.
Speaker:And the narrator was probably like,
Speaker:yeah, he was not spiritual either.
Speaker:I want this podcast to be fun,
Speaker:funny, interesting, passionate,
Speaker:and sometimes downright silly.
Speaker:a lot like the first time you met me
Speaker:or the last, or anything in between.
Speaker:But most importantly,
Speaker:I want it to be joyful.
Speaker:Joy and joy experience are in short
Speaker:supply in the world around us right
Speaker:now, and joy is just one of those
Speaker:amazing feelings that somehow you
Speaker:don't have that much control over.
Speaker:fun is much more in your control.
Speaker:Money helps happy and content once
Speaker:you're not too deprived is a bit of
Speaker:a state of mind and wellbeing, which
Speaker:tracks with serotonin is a lot about
Speaker:feeling taken care of, safe, loved,
Speaker:either by yourself or people around you.
Speaker:And euphoria.
Speaker:Sex or drugs or sex and drugs will do it.
Speaker:And then there's joy.
Speaker:Sometimes you just don't know what's
Speaker:gonna spark it, and sometimes when
Speaker:the triggers that should spark
Speaker:it are met, you don't know if
Speaker:you'll be able to experience it.
Speaker:The other thing that doesn't get talked
Speaker:about a lot is how important joy is and
Speaker:can be to recovery, especially long-term
Speaker:recovery from illnesses and disorders.
Speaker:Like trying to feel some joy or
Speaker:remembering that you can feel joy
Speaker:and if you're not there yet, at least
Speaker:being happy and content with what
Speaker:you have and trying to stay positive.
Speaker:And if you're not even there yet,
Speaker:at least trying to not be negative,
Speaker:this whole spectrum of positive
Speaker:emotion that leads towards joy.
Speaker:Because these days you do hear the
Speaker:names of the biggest disorders,
Speaker:usually during fundraising, and you
Speaker:do hear the names of the biggest drugs
Speaker:'cause TV just can't help itself.
Speaker:And then you hear a barrage
Speaker:of cliches and mantras.
Speaker:Means I could pronounce it mantra for
Speaker:you, but I would die a little bit
Speaker:on the inside and they would probably
Speaker:cancel my overseas citizenship.
Speaker:True story, but what you don't hear are
Speaker:the details of the painstaking process.
Speaker:Each person develops just to survive.
Speaker:Almost killing yourself to stay alive.
Speaker:The skills learned and what it feels
Speaker:like when the process is working, what
Speaker:it feels like when it's not working,
Speaker:and the techniques and tricks that each
Speaker:person uses to make it more efficient,
Speaker:more bearable, more doable, and the
Speaker:thoughts and decisions that go into
Speaker:mixing it up when it's not working.
Speaker:Instead, it's all thrown into
Speaker:this Rocky type of montage
Speaker:where it's almost glorified.
Speaker:Or a Game of Thrones type of introduction
Speaker:like Mother of Dragons and survivor
Speaker:of Autoimmunes, where even somebody
Speaker:who's impressed might be like, and how
Speaker:does one become a mother of dragons?
Speaker:Exactly.
Speaker:You care to elaborate.
Speaker:If you've been around me, you've
Speaker:probably heard me talking to other
Speaker:people about their mental health
Speaker:and their health issues, but I
Speaker:don't share a lot about myself.
Speaker:I'm definitely gonna do a lot of that
Speaker:on this podcast 'cause unfortunately
Speaker:I have insane amounts of experience
Speaker:with both of them 'cause I have
Speaker:not been dealt very good cards.
Speaker:In the last five years, I have come close
Speaker:to feeling like I'm taking my last gasps.
Speaker:I've been to countless doctor's
Speaker:offices after 10 years of
Speaker:intense physical therapy.
Speaker:I was in advanced physical therapy for
Speaker:two and a half years where I ended up,
Speaker:because I could feel inside my body that
Speaker:I'm about to lose the use of my legs and
Speaker:become disabled in a year or two, And
Speaker:I also needed any help I could get with
Speaker:easing the brain fog from the chronic
Speaker:fatigue that was 24 7 and left me almost
Speaker:useless and just when I was starting to
Speaker:make some progress, 2024 turned into my
Speaker:year from hell and I ended up in the er.
Speaker:Over and over.
Speaker:I was hospitalized so.
Speaker:I don't know what's gonna happen to
Speaker:me next, and I don't know how long I
Speaker:have, especially with the abilities
Speaker:that I'm used to 'cause in the last
Speaker:five years, for long periods of time,
Speaker:I have lost the ability to breathe
Speaker:properly, to sit properly, to stand
Speaker:properly, to play guitar, to sing,
Speaker:to read, to even listen to music.
Speaker:So I'm gonna talk about
Speaker:that in this episode.
Speaker:It might be a bit bumpy 'cause
Speaker:I'm one of those people who does
Speaker:not get any pleasure or feel any
Speaker:relief from talking about it, but
Speaker:it's all gonna be in my voice.
Speaker:I do have a voice for radio.
Speaker:I probably have a face for radio too.
Speaker:Which some of you all have a crush on
Speaker:'cause I read some of my dms, so I'll
Speaker:put up video of this somewhere in the
Speaker:least is gonna have my accent, which
Speaker:Brits say is a bit American Americans
Speaker:say is a bit British and Indian people
Speaker:are like, whatever's going on with
Speaker:this banjo lol accent is not from here.
Speaker:I like to say that just like
Speaker:me, it's half British, half
Speaker:Indian, and half American.
Speaker:There's more than a whole lot going
Speaker:on, and the math is definitely not
Speaker:mathing favorite Gen Z expression.
Speaker:So back in 2003 when I just moved to
Speaker:Maryland from Bama for grad school, I
Speaker:was walking around New York Christmas
Speaker:Eve When I felt this weird pain in
Speaker:my foot, it felt wrong from the get
Speaker:go, but I didn't think much of it.
Speaker:And I visited my parents in India
Speaker:over New Year's and felt this
Speaker:excruciating ungodly pain in my
Speaker:left hip, the bursa, the outer bone.
Speaker:And then in my lower back, the SI joined.
Speaker:It felt like this horrifying,
Speaker:unnatural pain from the beginning.
Speaker:When I stood on it, it felt like
Speaker:it was dislocated or like somebody
Speaker:was taking a baseball bat to it.
Speaker:And when I sat down, it felt
Speaker:like somebody has just taken a
Speaker:baseball bat to it, or that I
Speaker:had been in a horrible accident.
Speaker:And that's what my brain keeps saying.
Speaker:For the last 20 years we've been in
Speaker:an accident, we've been in a horrible
Speaker:accident, but I have not, when I got
Speaker:back to Maryland, the pain spread
Speaker:to the right side, to the right hip,
Speaker:to the right SI joint, and it became
Speaker:very hard for me to walk properly.
Speaker:At this point.
Speaker:Cortisone shots started going in, and if
Speaker:you knew, your sports players often run
Speaker:back onto the field after these shots.
Speaker:They barely made a dent for.
Speaker:me And it didn't end there.
Speaker:the inflammation then got
Speaker:inside the glute bones.
Speaker:I mean, I don't know what it's
Speaker:called, but the place where your
Speaker:legs meet the pelvic girdle.
Speaker:And at this point, it became very hard
Speaker:for me to find a way to sit or stand
Speaker:properly without feeling unbearable pain.
Speaker:It became impossible
Speaker:for me to walk properly.
Speaker:'cause the heel strike impact goes
Speaker:straight through that joint I
Speaker:would struggle to get outta chairs.
Speaker:I would get stuck in chairs,
Speaker:and I would be reduced to
Speaker:crawling by the end of the day.
Speaker:It was insanely painful and that
Speaker:many big joints being affected at
Speaker:the same time, probably played a big
Speaker:part in my downward spiral, and then
Speaker:like a nightmare that just won't.
Speaker:End, it didn't end there.
Speaker:the inflammation then got into my rib
Speaker:cage, to my jaw, to my right shoulder
Speaker:till at one point I only had a left
Speaker:shoulder that worked and I would be
Speaker:awake in the middle of the night in pain.
Speaker:Unable to turn myself over
Speaker:For what felt like hours.
Speaker:And then I would crawl around in
Speaker:the middle of the night trying
Speaker:to get to a counter where I could
Speaker:pull myself up with my left hand.
Speaker:it was a total shit show.
Speaker:And after six months of this, when an
Speaker:orthopedist who kind of knew his stuff,
Speaker:looked at me like he was sorry for me.
Speaker:And said, I don't know what's wrong
Speaker:with you, but I've ordered tests.
Speaker:That's when I realized something
Speaker:horrible has happened here.
Speaker:Like I could feel it every day inside my
Speaker:body, but I kind of hadn't accepted it.
Speaker:while they were testing me for all
Speaker:these diseases, that only happened to
Speaker:other people, not to you, like lupus and
Speaker:lyme and rheumatoid arthritis and aids.
Speaker:When I got home, I started
Speaker:looking online myself.
Speaker:It didn't even take that long.
Speaker:I found my perfect match.
Speaker:I diagnosed myself, even called my
Speaker:parents and told them I know what I have.
Speaker:And I remember the moment I gave
Speaker:up that narrative that I'm gonna
Speaker:be better in a couple of weeks.
Speaker:The pain hit my head different,
Speaker:and that was the first time I
Speaker:got that ugly feeling inside my
Speaker:body, like I think I'm dying.
Speaker:And.
Speaker:I don't know what it's like to be told
Speaker:that I have a short amount of time to
Speaker:live, but I do know what it's like to get
Speaker:a life sentence, and I got mine at 24.
Speaker:I was told I have.
Speaker:Rare inflammatory autoimmune disorder
Speaker:called ankylosing spondylitis that is
Speaker:genetic, lifelong, and not curable.
Speaker:That it's autoimmune in the sense
Speaker:that the body attacks its own joints
Speaker:and cells and damages them, and that
Speaker:it's inflammatory in the sense that
Speaker:it causes spiraling inflammation and.
Speaker:Pain in the biggest joints in
Speaker:the body, specifically the lower
Speaker:back, the sacroiliac joints.
Speaker:And then I heard a bunch of stuff
Speaker:that was just hard to process
Speaker:That since it causes bone damage,
Speaker:bone might try to regrow and that
Speaker:my vertebrae might fuse together
Speaker:and I might get bent forward.
Speaker:And that since I have so much hip
Speaker:involvement, I have a bad case of
Speaker:a bad disorder, which predisposes
Speaker:me to organ failure and damage and
Speaker:to other inflammatory disorders.
Speaker:And the internet added
Speaker:lower life expectancy.
Speaker:But that there are these new drugs on
Speaker:the market and we'll put you on them and
Speaker:we'll make you as comfortable as we can.
Speaker:I remember being taken aback by
Speaker:that expression because I've heard
Speaker:that one before, So I was put on
Speaker:these drugs, which are called TNF
Speaker:blockers and are immunosuppressants.
Speaker:So I am both autoimmune
Speaker:and immune compromised.
Speaker:So now when I end up in the er,
Speaker:sometimes they just don't know
Speaker:which one might have played a role.
Speaker:these were some of the most expensive
Speaker:drugs on the market back then, they're
Speaker:injections, which were harder to take
Speaker:20 years ago when tech wasn't so far
Speaker:along, I both responded to them and was
Speaker:in excruciating pain for four years.
Speaker:But I was really young,
Speaker:so I stayed in school.
Speaker:I limped around campus, even
Speaker:co-founded a really cool startup,
Speaker:a firefighter tracking startup That
Speaker:was one of the first companies in the
Speaker:world to demonstrate tracking people
Speaker:indoors like James Bond or Jack Bauer
Speaker:being tracked back at CTU by Chloe.
Speaker:And the more I could do, I buried myself
Speaker:in my startup and set off on what seems
Speaker:to be my MO during the worst times.
Speaker:I just survive from one day to the other.
Speaker:Maybe latch onto something like the
Speaker:startup, While also daydreaming the What
Speaker:am I gonna do if and when I get better?
Speaker:And when I do, I take my shot.
Speaker:So in 2008 when the pain started
Speaker:coming down, I moved to dc Then I
Speaker:had a band that played around town.
Speaker:I made a lot of friends.
Speaker:I went out a lot.
Speaker:I hung out a lot.
Speaker:I pulled a lot of people for chats.
Speaker:I looked like I was thriving, and
Speaker:then I crashed and had to go away.
Speaker:I call this neo in the matrix
Speaker:or amrit in the matrix part one.
Speaker:'cause this was my upper twenties, and if
Speaker:you know me from my upper thirties, you
Speaker:could be like, yeah, that's exactly what
Speaker:this fucker was doing when I knew him.
Speaker:And in the movie the architect tells Neo.
Speaker:Every time we reboot you, you
Speaker:do exactly the same things.
Speaker:You make exactly the same choices.
Speaker:You end up right here, you look confused.
Speaker:You scream and shout, and then
Speaker:you go through that door and
Speaker:the cycle begins all over.
Speaker:So on with it.
Speaker:but in 2008, while I was able to do
Speaker:more, I noticed that I had started
Speaker:feeling very tired, which by 2010
Speaker:became a feeling of weakness.
Speaker:And by 2012, I was just unable.
Speaker:Unable to do my chores, especially
Speaker:things like going to the grocery store
Speaker:and cooking while I was still able
Speaker:to do my startup work or music stuff.
Speaker:Later on that year when I felt even
Speaker:more unable, I went to India for
Speaker:two months to see if a break would
Speaker:help me feel better, and when it did
Speaker:not, I just wanted to feel better.
Speaker:So I went running outside on concrete.
Speaker:This was a mistake.
Speaker:Throughout this story, I've
Speaker:made a lot of mistakes.
Speaker:So have the people around me,
Speaker:so has the medical system,
Speaker:but this is not about that.
Speaker:Also big parts of this chapter of
Speaker:the story are for another day, but
Speaker:my joints got completely inflamed by
Speaker:the shock of what I had just done.
Speaker:But it led me to realize that my hip
Speaker:muscles and my glute muscles and my
Speaker:back muscles, everything responsible
Speaker:for walking, had completely atrophied
Speaker:And there was barely
Speaker:any muscle left there.
Speaker:And I'd somehow figured out a way
Speaker:to walk without using these muscles,
Speaker:probably because of the trauma and to
Speaker:save myself and my joints from that pain.
Speaker:And even when I bent to the ground, I
Speaker:kind of used the atrophy to move these
Speaker:joints away from the weightbearing path.
Speaker:And when I try to force them to engage,
Speaker:they start shaking or throttling.
Speaker:another way to view atrophy is
Speaker:in 2012, I fell to 110 pounds.
Speaker:I didn't look that bad, but you
Speaker:can see it if you look for it.
Speaker:And in contrast, I'm 160 pounds right now
Speaker:and people will still think that I'm slim
Speaker:or skinny and only four pounds of that
Speaker:is Madeleine cookies, which target won't
Speaker:stop stocking and I won't stop eating
Speaker:'cause somebody has to keep them in
Speaker:business The whole thing was a huge shock
Speaker:to me, but I slowly started learning
Speaker:these meditation practices so that I
Speaker:could deal with the pain and the agony.
Speaker:Over years, I've become an expert
Speaker:at it, at least for my purposes.
Speaker:And then I started doing the yoga
Speaker:breathing exercises called pranayam
Speaker:so that I could get some exercise.
Speaker:And the month after that, I started
Speaker:the physical yoga exercises to
Speaker:get some exercise without impact.
Speaker:And the month after that I
Speaker:started running or more like
Speaker:scampering on a treadmill.
Speaker:And I built this process for myself
Speaker:that I would execute every day.
Speaker:And after six months of that, when I
Speaker:was just about able, I came back to
Speaker:the us this was really important to me.
Speaker:If you talk to people like
Speaker:me, they'll sometimes tell you
Speaker:that the disease prevents them
Speaker:from achieving their destiny.
Speaker:In my case, I've known what my
Speaker:destiny or fate is since I was 24.
Speaker:It is to become disabled and to have
Speaker:to move back to my hometown, which is a
Speaker:nice but small town back into my parents'
Speaker:home from where I will never get back.
Speaker:And I've been running from
Speaker:this destiny For more than 20
Speaker:years, and it keeps catching up
Speaker:with me like final destination.
Speaker:But when I got back to the US I had
Speaker:put on some healthy weight and some
Speaker:tone, but I noticed that my hip muscles
Speaker:were still as atrophied as they were.
Speaker:So I asked my rheumatologist to
Speaker:send me to physical therapy where I
Speaker:had an excellent physical therapist
Speaker:who measured that my hips barely
Speaker:had any strength 'cause I could not
Speaker:Start the hip strength test he taught
Speaker:me all these exercises that I'd never
Speaker:heard of before, physical therapy in the
Speaker:beginning was pure misery and suffering.
Speaker:I would lie on the ground doing
Speaker:these strenuous exercises.
Speaker:I get completely
Speaker:drained, zero endorphins.
Speaker:But at the same time I felt
Speaker:something inside my body that
Speaker:told me that this is good for me.
Speaker:And my therapist was like, you seem to
Speaker:be very hardworking 'cause you're doing
Speaker:them every day instead of twice a week.
Speaker:So keep doing it for six months
Speaker:and you will start seeing results.
Speaker:Since he said six months, I was like,
Speaker:I'm gonna do it for at least two years.
Speaker:And in the spirit of not shying away
Speaker:from things that are hard to talk
Speaker:about, when the two years became four
Speaker:years and my progress was slower than
Speaker:expected, I asked my rheumatologist
Speaker:to send me back to him and, and,
Speaker:and found that he had passed away.
Speaker:In a horrible accident and it was
Speaker:really hard to, and fucked up to
Speaker:feel, to hear that somebody who was
Speaker:kind and strong and positive, that
Speaker:life had been that cruel to them.
Speaker:And anyway, I added everything
Speaker:he taught me to my process.
Speaker:I would wake up and do my
Speaker:meditation and breathing exercises
Speaker:first thing in the morning.
Speaker:Then I would move on to my physical
Speaker:therapy exercises, get completely
Speaker:drained, have some lunch kind of
Speaker:pass out, but then jump back up
Speaker:and head to Rock Creek Park to try
Speaker:to walk around using my muscles.
Speaker:I'd heard the expression Learn
Speaker:to walk again, which is more for
Speaker:neurological disorders and spinal
Speaker:cord injuries, but I thought that
Speaker:maybe if I keep powering away,
Speaker:something inside will start clicking.
Speaker:I learned years later that I was
Speaker:just slowly building the muscles by
Speaker:which someday I shall learn to walk
Speaker:again, and that day has not come yet.
Speaker:But after six months of this, I
Speaker:started feeling like I can't do this
Speaker:every day, that I'm feeling tired,
Speaker:and I took this as a good sign
Speaker:that things are hitting different.
Speaker:They're hitting right, and
Speaker:it's time for me to reboot.
Speaker:I also ran outta savings, so
Speaker:I co-founded another startup.
Speaker:This time the Sleep improvement
Speaker:startup that invented a wearable
Speaker:device that tells you whether
Speaker:you're dreaming or not, whether your
Speaker:body is healing with deep sleep or
Speaker:not, and teaches people cognitive
Speaker:behavioral therapy for insomnia.
Speaker:And then I had a band
Speaker:that played around town.
Speaker:I made a lot of friends.
Speaker:I went out a lot.
Speaker:I hung out a lot.
Speaker:I pulled a lot of people for chats, and
Speaker:I looked like I was thriving, and then
Speaker:I crashed and had to disappear again.
Speaker:Amri in the matrix, part two, but
Speaker:throughout these years I never
Speaker:stopped doing my physical therapy
Speaker:exercises three times a week.
Speaker:Like my life depended on it, both out
Speaker:of fear, but also because they were my
Speaker:friend and weapon against the disease.
Speaker:I struggled a lot to pull that off.
Speaker:I gave up a lot to pull that off.
Speaker:But by 2018 I started noticing that I'm
Speaker:starting to feel very tired again, and
Speaker:I'm also starting to feel a bit broken.
Speaker:And I noticed cracks within me and I
Speaker:kind of realized that in having this
Speaker:kind of pain disorder for at that time,
Speaker:15 years, it does something to you.
Speaker:uncontrolled pain that ramps up
Speaker:with no end in sight, almost like
Speaker:torture, but there's nobody on the
Speaker:other end who can even make it stop.
Speaker:It breaks you and in parallel
Speaker:the fix, the rehab, the physical
Speaker:therapy that kind of breaks you too.
Speaker:you struggle through these impossible
Speaker:to do exercises that take everything
Speaker:out of you, but you feel a bit up
Speaker:right after, and then you crash into
Speaker:this shaking kind of recovery where
Speaker:you feel like, I can't take this
Speaker:anymore, but you start feeling a bit
Speaker:better when you're coming out of it.
Speaker:But before you're even ready, you
Speaker:go again and you repeat the cycle
Speaker:hundreds and hundreds of times.
Speaker:In my case, thousands and
Speaker:thousands of times, it breaks you.
Speaker:And it's probably the reason some of
Speaker:our favorite sports stars walk away
Speaker:from sports like football and tennis,
Speaker:sometimes the most joyful people.
Speaker:'cause it breaks you and it
Speaker:sucks the joy out of you.
Speaker:And I could tell that
Speaker:that had happened to me.
Speaker:But at the same time, I felt some
Speaker:overall joy from being able to do
Speaker:all these things that I never thought
Speaker:I would be able to do again, like
Speaker:have a startup and have a band.
Speaker:And I showed up for all
Speaker:my friends and family.
Speaker:But by 2019, I started to feel.
Speaker:Completely broken and this ugly kind
Speaker:of chronic fatigue had entered my
Speaker:body where by the end of the day I
Speaker:would feel like I'm not gonna make it.
Speaker:which is an extreme exhaustion response.
Speaker:I even told some people around
Speaker:me, something really bad is
Speaker:gonna happen to me and I'm not
Speaker:gonna be able to work very soon.
Speaker:And then COVID happened.
Speaker:The world shut down.
Speaker:I buried myself in my startup.
Speaker:It kind of helped that I didn't
Speaker:have to show up anywhere.
Speaker:I tried to keep doing my music
Speaker:things too, put up some videos,
Speaker:but I was horribly outta breath.
Speaker:I was struggling for air, and I would
Speaker:have to lie down in the middle of the
Speaker:day on the couch for hours, but suddenly
Speaker:I would get a rush of adrenaline and
Speaker:head to a protest and I would feel good
Speaker:about it 'cause it was really important.
Speaker:But then I would pay the price for
Speaker:going and I was like, somebody who's
Speaker:drowning going under, coming back up
Speaker:for air, flailing around, then going
Speaker:back down again until in November.
Speaker:The chronic fatigue completely took over
Speaker:my body and there was nothing left of me.
