May 23, 2025 • 54 mins
Welcome to Chronically The Sickest - the sickest podcast you know.
On today’s episode I’m joined by pro athlete, Cat Sally.
We get into reconnecting with joy, comorbidities and vaccine side effects.
Follow Cat on Instagram @catsally
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Real.
(00:32):
Yes. No, I'm not gonna do this
without having an iced coffee. OK, well, welcome, Kat, to
Chronically the Sickest podcast.How are you?
I'm really good. How are you?
I'm doing well. We had a couple of technical
issues this morning, but we're here.
(00:53):
Yeah, made it. Well, for the listeners at home
who may not know who you are, can you tell me and them a
little bit about yourself? Yeah so I'm currently a
therapist and an air divergent coach.
I currently live and work in Indiana but do coaching kind of
across 50 states virtually. I also was in the past AUS
(01:19):
national team swimmer. I had to retire a couple years
ago due to long COVID, but I still feel like that's very much
an aspect of, you know, who I am, my identity, and it's kind
of shifted into many ways. But yeah, that's kind of who I
am, what I do and what's going on right now.
That's awesome. That was a really great, like
(01:41):
encompassing all of the things that someone would want to know
about you. OK, I have to ask.
You are a therapist of course, and it sounds like of course
you're not really doing as much like physical athlete work, but
like, do you have any hobbies? Like what are you doing for fun
when you're not working? Yeah, it's been definitely a
(02:02):
shift in trying to find what those things are in my life now
that swimming and athletics really can't be that filling
that role entirely like it used to.
Writing has always been a major passion of mine and I'm really
trying to lean back into that and intentionally, yeah, create
(02:22):
more 'cause I definitely, you know, get sucked into the doom
scrolling trap sometimes. And it's easy to kind of mind
numb our way through a lot of things going on.
But trying to intentionally reconnect with some of those
older hobbies like writing and passions like that, as well as
(02:43):
special interests and things I enjoyed as a kid is another one.
So I'm trying to kind of reconnect with sensory aspects
of movement like swimming and like you know, going on walks
and being in nature. But trying to connect it from a
enjoyment focused and feeling better focused way rather than a
kind of achievement focused, youknow, experience like swimming
(03:07):
or athletics is often. OK.
I like that. Focusing more on the somatic
versus achievement exercises, OK, I like that.
OK. It's definitely work in
progress, but yeah, it's a very weird deconstructed.
Like it feels very unattainable at times to actually connect
(03:27):
with, you know, enjoyable thingsin that way when you're so used
to just having your interests and the things that you kind of
find pleasure in be so focus on achievement and like pushing
down how you feel all your life.Like you can't do that when you
have a chronic illness and when you're disabled, like you just
(03:48):
can't. Yeah.
So those are kind of my hobbies right now, I guess trying to
figure out my hobby is myself, trying to figure out how I live
my life. Like that's my that's how I
spend my time, my hobby. But.
That's a good answer. It's like, what do you do for
fun? I don't know.
Whatever. I feel like.
Yeah, trying. Trying to exist, like trying to
(04:10):
feel OK, that's my hobby. See that feels more like an
achievement based thing is trying to exist 'cause you're
like oh brush my teeth. Yes, it is.
It is. And honestly, like, that's where
achievement really does come in handy of like kind of
reconnecting with goals and things in a way that used to be
so like healthy for me. And I was protective factor
(04:34):
being an athlete growing up, knowing how to set goals,
learning how to have discipline.And I've really lost how to
connect that to my general life in a way that isn't big picture
goal oriented because like with swimming, I was so focused on my
health because, you know, I wantto go to the Olympics.
I want to do this, that or the other.
But now those achievements have to be like, oh, I brush my
(04:58):
teeth. Oh, I, I slept like 10 hours
last night. I actually, you know, I feel OK.
I can actually write. I can do the things I want to
do. And shifting that perspective
of, OK, these accomplishments are not the grand scale, like
huge, you know, physical feat things that I once dreamed of.
But they are just as important. And they are, Yeah.
(05:23):
Just as like I, I, I have such along life ahead of me.
And if I keep focusing on thingsthe way that swimming and
athletics taught you how to and capitalism it, it goes wider,
like how to set goals and achieve them.
Like I'm never gonna feel OK so.OK thank you, I I feel like I
(05:46):
learned a lot from you just answering like 2 questions.
That was insane. I tend to go on like info dump
feels, and then I'll like, get through like 30 seconds of me
just yapping, and then I'll kindof like come back into my senses
and be like, wait, did any of that just make sense?
So I'm glad that you had that response, because yeah, my
(06:08):
autistic brain works very monotropically, as I've
realized. I get you.
You're good. You're on like a monorail and
you're just like going and you're like, this is not a high
speed train. This is a conversation.
Exactly, yes. I do the same thing.
You're all good. Yes, it did.
It did make sense. And I I do feel like I have
(06:29):
gotten to know you a little bit more, so I'm hoping that the
listeners did as well. But you had mentioned a little
bit at the beginning that you were like an Olympic athlete and
then you got trying. Yeah, trying.
I would, wow. I was really about to be like,
we're all trying to be Olympic, Olympic athletes.
(06:51):
And then I thought about it and I went.
I am not, but to be fair. That is like the goal of, like,
success that we're kind of like,you know, taught is the ultimate
things like going to the Olympics or like doing the big
thing. Like, yeah, we are kind of in
some ways we're all trying to beour own version of success, I
guess. You made that way deeper than.
(07:13):
I have a tendency to do that. Wow, crazy.
It's almost like you're a therapist.
It's almost. Like I made my special interest
like my entire livelihood. Wow.
OK. So you were a professional
athlete, you were doing that, you were working towards
something and then you got long COVID.
(07:34):
And I know that that diagnosis process in particular is kind of
a little wonky. So talk me through that.
Like what was your experience with that?
Yeah, so I, I had actually come off of like just recovering from
really severe overtraining syndrome for a couple of years
and I was finally back to feeling pretty close to 100%.
(07:56):
Like I looking back, I should have been a bit more cognizant
of not over pushing my body evenafter like recognizing that
overtraining diagnosis because Imean, even what I was doing then
after, you know, decreasing my training load, it was still
probably a bit too much. But I was finally feeling a lot
better before I got COVID for the first time in January of
2021. And leading up to that,
(08:19):
obviously everything was still pretty shut down.
Like we had some meats here and there, but nothing big enough to
where I actually got to kind of prove my like come back, so to
speak. But my training was going really
well and I was really excited for open water nationals that
spring. And I'd actually stayed home
(08:39):
from like going to the University of Rutgers, sorry,
Rutgers University, where I transferred to from University
of Alabama in order to prevent getting COVID, like during that
time between, you know, lockdowns.
And I wanted to have a consistent training schedule.
So I sacrificed like college to essentially not get COVID and
(09:02):
focus on my training and my health and ended up getting it
anyway. And I, you know, when I first
tested positive, I had my littlelike mental freak out moment of
like, shoot, this is going to keep me out of the water for two
weeks. I was not expecting the actual
effects that I experienced at all because of course my mind
(09:24):
was like, oh, I'm young and healthy.
Like I'm an elite athlete. Like how would this like,
there's no way I would, you know, I'll just take my two
weeks. It'll be OK, I'll be fine.
And it, it just definitely was completely the opposite.
I was like so fatigued, so fatigued.
This just like bone crushing, deep bone tired feeling that
(09:45):
like I, I felt like I couldn't even walk upstairs at times,
like I'd have to kind of like sit down and take breaks and it
would very much ebb and flow. So I ended up moving out to New
Jersey after I kind of recoveredbecause, you know, at the time
there was more of a belief that you couldn't get it again or
like now you were immune or, youknow, all that kind of like
(10:06):
actually not actually scientifically accurate
information that we kind of society tends to still believe.
But regardless, I moved out there and my college coach just
obviously I was, I was somethingso bad.
Like it was, it was so bad. I was going to doctors at the
university, sports Med specialists, like for a year,
really no one could tell me anything other than like, oh,
(10:28):
it's stress, it's anxiety. Like you're fine.
I tried everything. Like I, you know, I was
researching intensely all the time of how to fix myself and
really nothing truly helped. I would go through period, like
I'd have a couple weeks of like feeling better ish swimming
(10:51):
decently well, I'd get that glimmer of like, oh, wow, I can
do this. And then I'd crash And like it
would not there was no room to, you know, take a morning off.
I would skip practice and, you know, say I'm sick.
But that was also met with, you know, how could you possibly be
sick this much? You're fine.
Get get out of bed. You know, so I never actually
(11:14):
even got any kind of like periodof time to rest.
And we all know that, you know, chronic illnesses, any kind of
disability, rest is a huge important factor in how you
recover and how you generally feel today day-to-day.
So because I didn't get that andbecause doctors were just
telling me like it's all in yourhead, I did not get any like
(11:36):
medical help at all until like almost a year and a half.
I feel like someone finally mentioned, oh, this is COVID or
maybe someone had mentioned, oh,it was probably COVID related,
but it'll go away. That was kind of the vibe.
Like just do keep doing what you're doing, ignore it.
It's anxiety mostly. You're fine.
And then I kept asking for a tilt table test 'cause I saw I
(11:57):
was researching a lot of people had POTS and was getting, were
getting POTS from COVID And I was like, oh, this makes a lot
of sense. This sounds like me.
I asked my cardiologist multipletimes like, hey, can I have a
tilt table? They did a stress test.
Those are not the same test at all.
They're like, oh wow, your stress test is totally normal.
You're fine. And I'm like, girl, no, I'm not
(12:19):
actually. I literally feel like I'm going
to die. So finally, after I retired from
swimming, I kind of made the decision after Purdue versus
Rutgers in 2022 dual meet, whichactually it was I I'm not mad
that that was my last meet because we beat Purdue and that
(12:40):
was really fun, especially now that I live in Indiana.
I'm like, haha, wreckers, but nice.
I was sitting on the locker roomfloor after my 500 free MI 2 IM
and I did with them back-to-backand I like, I swam OK, like not
well, but like, you know, well enough to previous me would have
(13:00):
been like, oh, I can keep pushing, I can keep pushing.
But I was sitting on the locker room floor like unable to see
'cause my, I was so faint and like some I was like, this is
not right. I'm missing the whole rest of
the meet. I'm not out there cheering with
my team mates because I can't get off the, the floor.
And it was kind of in that moment when I was like this, I
cannot keep pushing my body through this.
(13:22):
Like I have to stop. And it was finally after I made
the decision to retire that I switched to a different
cardiologist. He ordered the tilt table
finally. So, you know, maybe had they
listened to me earlier, I could have gotten treatment.
Maybe I didn't. Maybe, you know, I always go
through the maybe things could have been different had doctors
freaking listened to me. But, you know, of course.
But yeah, ended up, yeah, getting treatment and support
(13:47):
finally. And yeah, here we are.
That was January of 23. Finally got medication and
lifestyle support, rest and feeling a lot better now, but
still definitely a day-to-day aspect of, you know, my life and
my identity even because, yeah, a lot of what I experienced.
(14:10):
Yeah, of course. I mean, there are a lot of
things that are a part of our identities because like you
said, yeah, it's like daily you wake up and you go, oh, these
things affect me a lot. That would make sense.
Right, right. Yeah, exactly so.
Can I ask when? OK, wait.
OK. Wow.
First of all, huzzah. You got your I.
(14:33):
Love that you say. Huzzah, I say that like all the
time. Did you watch the show The Great
I Literally that was I I, I never finished like I think the
third season, but I quote that show.
The third season sucked. Yeah.
Thank you. Thank you.
It was not historically accurateand I understand none of it
really was, but like they sorry anyway.
(14:53):
But yes, it's a great show. OK, huzzah, huzzah, that you
agree, 'cause I couldn't get through it and I was like this,
oh man, OK, but yes, huzzah. Thank you.
Oh my gosh, everyone at work, whenever I say that, they're
like, you're so weird and quirkyand I'm like, no, I'm just
autistic and I like the great. Like, I don't.
Yes, period. This is great.
(15:16):
I love it. But it's great that you got your
diagnosis finally. You got a new Doctor, which is
always like, so like, such a relief when you get a new Doctor
and they actually, like, hear you and do what's necessary.
And you're like, oh, my God, I spent all this time with this
stupid insert swear word here. Yeah, and I could have just gone
(15:38):
to a different person who listened to me.
They were in the same practice, like they were literally in the
same practice and I they were 45minutes away from where I was in
New Jersey and the the sports Med people.
And that's another thing about NCAA Division one athletics that
I think a lot of people like what was my experience dealing
with chronic illness in that environment is they are kind of
(16:00):
in control of your health. Like there are many times where
I would try to advocate for myself of like, hey, can I like
see the specialist? But because they kind of own you
in many ways, like their insurance and your insurance,
like they're supposed to be the ones setting up all of these
appointments are helping you through all of this process.
And they don't like it when you kind of try to take that
autonomy into your own hands andlike fight for your your
(16:24):
medical, like advocate for they don't like advocating.
They like you to be a very specific way in in every you
know, in true in true capitalismdriven fashion.
Of course. But yeah, they were in the same
practice. I just happened a year later to
get assigned to Doctor Tulo. I believe that's how you
pronounce his name in New Jersey.
(16:45):
Shout out to him 'cause he's awesome.
He actually listens to you. If you have POTS and suspected
EDS or anything like that, he ordered the tilt table, told me
that like my hypermobility, he'slike, yeah, it looks like you
have HSD or HEDS. Haven't gotten a formal
diagnosis for that, of course, because, you know, a geneticist
is a three-year wait list, of course.
(17:06):
So that's great. But he was the first person to
actually explain to me how all of these things interconnect.
And that's honestly what kind ofled me down the rabbit hole of
realizing that I'm autistic too.Because like, Oh my God,
everything is interconnected. Everything makes so much sense
now. I hate that I had to find out
about it this way through all ofmy own individual research.
(17:27):
But I guess that's fine 'cause Ilike research.
So, like, all right then. But yes, great, when you finally
get someone to take you seriously, listen to you.
Yeah. And it sounds like your doctor
was informed in the sense that these things are connected
because most doctors are just like, this is my specialty and
(17:50):
you're like I. Yeah, he still wasn't masked,
which is a tough one. And that that one is a big
conundrum for me. And in like all of this is a
major commentary. I actually have two masks here,
like sitting right here for the part where we talk about like
supports and things for people dealing with this.
But that's a major, major complaint with the medical
(18:13):
field. Like even the people who are
supposed to be like long COVID researchers and all of this,
like you're like, girl, you're not wearing a a mask like, or
you're wearing a surgical. Like what are you doing?
I'm sorry, are you reading your own research?
Like, OK, Anyway, they're like. No, I'm young and healthy.
Yeah, yeah, exactly. Like bitch, I literally was 10th
(18:35):
in the world in the 25 kilometeropen water race.
You think I wasn't fucking youngand healthy?
Sorry, I don't know if I'm allowed to swear.
You're good. You're allowed to.
OK, good. I just try not to so I don't get
in trouble. OK.
Wow. This is I love this episode best
friends me anytime an autistic guest is on the podcast me I
(18:57):
love you can. You tell like, don't have enough
like social interaction. Oh, wait.
Yes, I yes, and. Yeah, huzzah.
Anyway. Huzzah OK so you got your cool
new Doctor. He doesn't mask, but pros and
(19:18):
cons with getting diagnosed withPOTS And you kind of saying that
it's likely that you were experiencing POT symptoms
because of long COVID and like your experience with the virus.
Like, talk to me, talk to me about that.
Like when you got your POTS diagnosis, was that something
(19:40):
that your doctor was like, hey, I think that you got it from
this? Like how?
Like how did you equate those things?
Was it just from your research? Yeah, after he explained the
dysautonomia because I mine is confusing.
I, I say pots because that's theone that people like actually
know what it is. And he even when he was
explaining it, it was like. You know, a mixture of lots of
(20:03):
different weird shit going on with my autonomic nervous
system. So pots disautonomia, I'll just
say disautonomia because that's probably more accurate.
But I as soon as I found out about it, I was like, Oh my God,
this explains so much. Not only just about like what
I'm now experienced with COVID, but also my mom has Epstein Barr
syndrome and she's had that since she was 17 and in high
(20:24):
school. And she, I grew up understanding
kind of hearing her talk about how she got mono her senior year
of high school and was doing so much.
She was dancing at Disneyland. She was a very like similar to
me in the like performance aspects of her life.
Like she was an IB student at a very high level high school.
(20:46):
She was like, you know, sleepinga minimal amount because she was
dancing at Disneyland in the parades as a 17 year old high
school student and like doing all of this incredible like
dance like athlete stuff. And she got mono and literally
for a year basically didn't go to school and didn't, I wasn't
able to do much because of how ill like she was constantly and
(21:07):
like not being able to stay awake.
Like she would fall asleep doinghomework in like the recliner.
And I've heard about this growing up.
And then I also remember on hikes and standing up, she would
often get like that blackout light headed feeling that like I
now experience from COVID. And it was always unexplained.
(21:29):
But once this doctor started explaining dysautonomia to me, I
was like, wait a second. So I went down the deep dive
rabbit hole of being like, Oh mygosh, this connects to my entire
family's neurodivergence. And likely a lot of us are
autistic, ADHD or therein aboutsmixture of all that we all have
(21:53):
some semblance of health viral induced or otherwise related
issue. We all have these weird
disautonomia type things where we get like my dad even though
he doesn't have the same like disautonomia like standing up
specifically POTS type episodes.He'll get migraines and like
(22:17):
weird, I think like just a bunchof weird autonomic nervous
system shit. And I went down the rabbit hole.
Research is like, Oh my God, allof this, all of it's autism and
all of it's like nervous system.It's all, it's all of this.
And I like it became like such ahyper focused special interest.
But now I literally, it's so bad'cause I have to balance the
(22:41):
research monotropic aspects of being autistic, of researching.
Last night I stayed up till literally 7 in the morning
researching and creating this document of how to build my life
to be the most like nervous system regulating and autistic
slash chronic illness focused life that I possibly can build.
But I need sleep. So what I'm planning on doing
immediately after we get off thecall is go and sleep for three
(23:02):
or four hours to like try to compensate, to try to be like,
OK, if I have to be monotropic at night or like in these
extended amount of times and I'msacrificing sleep, like where
else can I build that into my day to make myself more
functional? Because I can't do this
capitalistic, like just grind until you die.
Like I can't do it anymore. I just can't.
(23:23):
So I have to like be intentionalabout building my life around my
needs. And I feel like my parents and
my mom and people in my family do do those things to a certain
extent without the language. And I feel really fortunate to
be able to have the language in the like scientific
understanding of like why I experienced what I experienced,
(23:44):
why my whole family experiences what it, what we all experience
with health and neurodivergence and how those intersect that
like, I'm like, wow, I feel hopefor the first time of like being
able to do like make a life thatactually feels like I can live
it, unlike, you know, life before, where it's just like,
don't ever stop trying and pushing your body's needs away
(24:07):
and focusing on this goal. Right, OK, OK, first of all, you
gotta, you gotta let me know when you put your your optimized
functionality paper out 'cause Iwill be grabbing that.
No, that's genius. Hilarious that you're like and
(24:27):
I'm trying to regulate my nervous system, but I did stay
up until 7:00 AM doing this so. Yes, it is a fine balance I have
found and I'm listening to the Autistic Culture podcast, Which
major shout out to them. They've helped a lot in
understanding all of the intersection, you know, aspects
(24:47):
of this. But yeah, ideally the goal would
be to kind of like take this life experiment.
I have to put approach it very autistically of being like, OK,
this is my life experience to like take care of my meat suit.
And I'm going to record all of my results of this experiment.
And then I'm going to be able touse it to write my, my book
about my swimming experience andhow neurodivergence and chronic
(25:08):
illness should be more accommodated and how generally
disability justice is needed andblah, blah, blah, blah, blah,
blah. Anyway, So yes, hopefully that
actually happens. Oh my gosh, yes.
I literally have, I have a wholebookshelf just full of chronic
illness and autism and I, I likebooks that are like, good.
(25:28):
So I, I can't wait. Oh my gosh.
First, first for sale right here.
OK. But it does sound like your long
COVID research was like personalresearch after kind of getting
your, your dysautonomia diagnosis.
And like you said, post viral malaise is so common.
(25:53):
And yeah, first of all, not first of all, this is like
seventh of all, now that I'm talking, but my mom is also
autistic and has EBV. No way.
Sorry. You were talking and I literally
was like. Dude, no way, no please.
Like, I mean, I guess it's a podcast, so it's hard when we're
not just like yapping. And I always do that with like
(26:14):
just in regular life, but that is wild.
That makes so much sense. Potsies, listen up, we both know
that presyncopy sucks. Fainting too.
Passing out when you're alone though, that is 2 thumbs down.
It's so nerve wracking. Like what if I pass out and hit
(26:37):
my head or I start getting dizzywhile I'm driving?
Am I gonna be safe? Or just in general, am I gonna
be safe as a disabled woman? That anxiety, that is what gets
you. But I don't have that anymore.
Well, I do have anxiety. I am an OCD girlie, but not
(26:58):
about passing out or my safety because I just click my invisi
wear necklace and both my familyand emergency personnel are
alerted. The dizzies are scary no matter
how many times it happens. But knowing that I have a backup
plan is what makes me feel a little bit better, so maybe
that'll help you too. Using code sickest for 10% off
(27:21):
on your invisible wear purchase at the link in your description
is an option. Sending you salty vibes.
Okie dokie. Anyway, let's be so for real
y'all. We are fatigued.
We are fatigued girlies. We have brain fog and there is
not much we can do about it because that's just a part of
having chronic illness unfortunately.
(27:43):
What if I told you that that wasnot the case?
Well, you know that like we can't do anything about it.
I am partnering with Brainzyme, a energy and focus supplement
made in Scotland. So you know it's not USFDA mumbo
jumbo and it works to fight fatigue using natural
ingredients which we love. So if you are interested, go to
(28:06):
Brainzyme dot US today and get their trial pack with a money
back guarantee plus some extra money off with code sickest 10.
It's a lifesaver I swear. Anyway.
That's, yeah, so interesting, yeah.
Like it's like. Yeah, I, that's what gets me
(28:29):
with like advocacy and stuff andwhy I feel so passionate about
it, like talking about these things because like your mom, my
mom, so many older generations of people who like don't have
this language and understanding.And it's like, dude, your life
could be so much better if you just understood yourself through
the context of this lens. Like seriously, I, I cannot
(28:51):
stress that enough. And it's hard to not just like
look at here's someone's life and like be in a, in a normal
conversation, just like with a friend or with a, a person,
especially if they're a bit older and they don't, aren't as
like aware of, you know, ableismand things and how we need to
deconstruct that. But it's so hard to just be
like, so have you ever thought that you're autistic or like,
(29:12):
have you ever thought that you might be disabled?
Like it's so hard to, because I see that as such like a
positive. Like, yeah, I understand this
about myself Now I can change the things I can change to like
better my life. And obviously, you know, things
are not always peachy and there's so many.
I mean, it's called a disabilityfor a reason.
It's not sunshine and rainbows, but like accepting that you are
(29:33):
disabled and like constructing your life around that fact is so
freeing. And I wish more people
understood that. But it makes me feel so much
more hope for people like my momand your mom or people in these
older generations who like have been like can really deeply
understand so much of the context of their lives through
(29:54):
this lens. Now that we have so much more
research about how viral things and just like the intersection
of neurodivergence and chronic health issues.
Cause yeah, I, I feel like all before everybody just felt like
they were lazy and like, I mean,that's still a thing, but
obviously. But I feel like it's it's, it
was really bad in previous generations.
(30:17):
Yes, it is nice now that the younger generations are like,
oh, there's a word for what I'm feeling.
And sure, not everyone who is neurodivergent or has a chronic
illness considers themselves disabled.
Like that's OK. But being able to be like, oh,
for older generations, like you said, just to be like, oh, like
(30:39):
this is nice to have a word for it.
It doesn't mean I necessarily have to like.
A dirty word. Yeah.
Yeah. You can take all the positive
aspects of this label and this identity and the accommodations
that come with it and leave all of the stuff that doesn't make
you feel supported and good. Like that's, that's the point of
it, right? Like labels.
(31:01):
I was actually just thinking about this the other day of
like, you get a label regardlessof what your label.
Like you get to choose what labels you have and labels are
going to happen regardless. So if you don't label, if a
label isn't autistic and disabled or chronically ill or
having, you know, needing supports whatever label feels
(31:21):
best for you. If you don't have that, you're
going to get lazy, stupid, like all of these other things that
we get. So why not choose the one that
actually is accurate and scientifically supports you?
I don't know, maybe ableism is the cause, but.
Yes, OK. Oh my gosh, this is great.
(31:45):
I love. This I this is I, I love yapping
about this stuff. No, it's great.
And it's like nice to have almost like a like a context for
it, you know, to have people be listening to this and being
like, oh, like I relate to this or this is important to me.
And you're like, oh good. Like we're connecting over
something we both agree on. Yeah, that's a special thing
(32:10):
that like, I feel like we people, humans need to
experience that more. I feel like like true
connection, autistic connection.It's it's it's very special.
The girls that get it, get it. Oh my gosh.
OK. Sorry, I like my brain wants to
like go off on a tangent, but I'm like Oh my God, no wait, I
(32:32):
have. Whatever.
Yeah. No, there's a post pod episode
that we usually do like a littlebonus to like talk about shit
that we don't actually talk about on pod, like the stuff
that we're talking about. I know.
So I would love to do that with you because this feels like it's
going to be just like special interest extravaganza.
I would love that. OK, OK.
(32:55):
And then you can go take your nap.
OK, so before we move into kind of the tips and tricks part of
the podcast, can you just quickly tell me the symptoms
that like you are experiencing as a result of your long COVID,
your disodonomia? So these days it's definitely
(33:16):
still the passing out feeling orlike the Lightheadedness when I
stand up or over exert myself orjust generally I'm not
supporting myself in the way that I, you know, logically, no,
I should be like if I don't get enough sleep, if I'm not eating
enough, if I'm not getting my salt packets, like you're not
going to feel good, girl. Like I don't know what to tell
(33:37):
you. So like that's definitely there.
But with the lifestyle changes with the salt and like resting
and trying to sleep as much as Ican and like going on walks for
exercise, that makes the symptoms pretty negligible.
But to the point where like yes,it's still there, but I can do
(33:59):
what I want to do. So when I'm not in a flare, I
feel definitely still like I have to pace myself and like
spoons are very real for me for sure.
But the long COVID specifically with this autonomia, that's not
as much a major kind of limitingsymptom these days when I am
(34:20):
correctly supporting myself, of course.
But the joint pain, EDS stuff that has been majorly limiting
me recently I was diagnosed withlike early onset arthritis in my
knees from apparently just like hypermobility and the joints not
being correctly. They're like rubbing I guess.
(34:43):
So, you know, those are kind of the symptoms that day-to-day
more, I guess what's the word flare and brain fog whenever I
get on a roll and then I'll justkind of like all of a sudden
lose my train of thought and be like, wait, case in point right
there. Brain Brain fog and fatigue are
like the silent killers when it comes to any chronic illness.
(35:05):
Yeah, yeah, yeah. And COVID is a yeah yeah.
Yeah, I can. Get on my soapbox about that all
day. It's so hard because the
intersections of like long COVIDand neurodivergence with like
sensory issues and stuff are rough when masking is the only
thing that's like actually effective Sucks.
(35:26):
Believe me, I I get it. Going to the gym in a mask, not
fun. But also the sensory issues that
come along with getting COVID and getting long COVID and being
disabled by COVID, which can happen to anyone at any time.
That's way worse. So I try to like in my brain be
like, OK, you can deal with the sensory issue of the mass.
Think about how much worse it would be if you had all of that
(35:47):
horrible fatigue worsened again by another COVID infection.
So it is constant cost benefit analysis of, you know, dealing
with all of the intersecting issues and how you feel.
I like that the cost benefit analysis 'cause it's right.
It's really is like pro pros cons, you know like yeah,
obviously no one wants to wear amask.
(36:08):
I get it. I get the anti maskers.
I think there's but. Anyway, again, probably cut
that, but. No, you're good.
The I don't need. My family knowing that right
now, but. You're good.
Anything that gets cut is behinda pay wall.
(36:28):
So if they want to pay me $3, sure they can hear all about
this. But I love that I'm just like,
well, this is the content you guys want I guess.
No, I would love OK, we're goingto get back to the actual stuff.
But before that? OK, so now that we know, I'm
(36:51):
going to pretend like this entire part never happened even
though this was so good. I'm so excited right now.
OK, so now we know a little bit about your diagnosis story and
your symptoms. Tell me a little bit about the
tips and tricks that you have because I know that you brought
props to share and I love that as like a guest experience.
(37:15):
A visual aid so these are a couple of masks that I now where
I you know there was a period oftime of course fell for the
propaganda of COVID smile now blah blah blah yes there was a
period of time where I was not masking properly disclaimer now
I learn better I do better and this is where you can learn to
(37:36):
do better too KN 95 is good because they're often cuter
they're ear loops This is a wellbefore relatively comfortable
you know sensory blah blah theseare the types that I work out in
when I do want to go to the gym or do anything more intense
indoors they are much more breathable but they're ugly
(37:59):
obviously and they. Are.
Yeah, it looks a little bit likea.
Diaper yeah, when they say sure when they when they judge
maskers for with diaper on the face like I, yeah, I, I do see
it you're valid in saying that but like, am I also not going to
have worsened disability symptoms because of COVID?
Yeah, yeah, yeah. I haven't been sick since like
(38:20):
over a year ago. So yeah.
So yeah, masking number #1 of tip, like please just just look
into it, you know, open your mind to the possibility that
masking or, you know, just beinga little bit more COVID
conscious is, you know, part of a lifestyle that would be
helpful for you and people in general.
(38:42):
Even if you are temporarily ablebodied in every way, masking and
understanding how COVID can impact the body is probably the
number one health tipper trick that is most important.
And then obviously then leading into that excess, assessing your
accessibility needs and what youneed to best support yourself
(39:04):
individually, whether that be, you know, sleeping a lot or
making sure you have time for naps or, you know, using things
like CBD or like pain topicals or whatever, whatever, things
like that. Like allow yourself to kind of
be high maintenance. I feel like there's a, there's a
(39:25):
view of like, oh, they're so high maintenance.
Like that's so, so extra like you're doing too much like, no,
if you have the means. And obviously that's a major
issue. It's like the accessibility for
disabled people to get the support they need, like major L,
which I feel like I can't get onthat soapbox now.
I got to, I got to, I got to stay on track.
But yeah, trying to assess wherein your life your accessibility
(39:49):
needs could be made more accessible, yeah, could be met.
And that will lead you to a morelike generally feeling better
life that looks different for everyone.
Absolutely, absolutely. That's AI think that's just like
a great overarching like tips and tricks like thing to have is
(40:13):
just assessing your own needs and then doing those things and
researching it. Cause yeah, like you said, masks
like yes, like they are not a great sensory experience.
So if you assess your needs and you go OK, I feel like I do need
to protect my health when I go outside, but at the same time,
gross. I don't want like a weird
chicken beak diaper looking thing on my face.
(40:35):
Then then yeah, like research online, like go out and find
something that works for you andis comfy like you said.
Wait, what was the brand you said that you the red one that
you Sorry for listeners. There's a video.
See this is the well before can 95 pretty breathable 1 issue I
do have that I have not a mask that I haven't tried yet, but
(40:56):
maybe could be a more sensory friendly option that I'm looking
to try is the ready mask. They're an adhesive.
Oh, straps, it's much it's pretty breathable from people
like reviews again, I have not. Hopefully maybe by the next time
we talk I'll have try them and Ican give a little spiel.
But yeah. So if you're bothered by straps
or, you know, ear things, I knowthat's like an issue for me
(41:19):
sometimes is it gets painful behind my ears.
That might be an option of something you can use to protect
yourself if need be. Things unlike public transport,
doctor's appointments, things where like, you know,
necessities, where disabled people deserve to go and you
deserve to go and not get ill from that space.
Yeah, yeah. OK.
(41:39):
Oh my gosh, I'm going to look into that because that sounds.
Kind of, yeah. Can we get a sponsorship for the
mask brands mentioned? Hey, well before do you want to
sponsor us? The The Mask brand, the podcast,
Duncan, if you're hearing this, I think this another podcast.
This is just yeah, guys, public service announcement.
If you would like to sponsor thepodcast.
(42:01):
If you would like to sponsor Cat.
By sponsoring us with our accessibility needs, please.
Thank you. Like guys, we can appeal to a
different audience. Yeah, no, I'm, I'm trying.
I put a vision board together recently where I was like, these
are the brands I want to work with and some of them.
That's such a good idea. That's such a good idea.
(42:22):
Did you, did you just do recently do a vision board?
Three days ago, three days ago. I, I'm about to print out all
the pictures and make it becauseI, I'm in my research phase
right now to find the most accurate images to put on my
vision board. Of course, obviously Joe March
is on there because obviously I have to like embody Joe March
and everything I do. From Little Women.
Yes, Slay. Yeah, anyway.
(42:43):
My bad. Oh, my God.
Wow, Listener, this is way more of a chatty episode, but
honestly, I love it. So I feel like you guys should
too. Yeah, they're here.
Great. OK.
OK. I like this.
I like this. So yeah.
Assessing your own needs. Masking of course, is an obvious
(43:06):
one. Do you use any mobility aids at
all? I know that for a lot of people
fatigue is a really hard thing with on COVID, so do you use
anything for that? I I have braces that I now use
with the knee pain and the like fatigue.
It does help with standing and walking.
I was using KT tape to help support my joints.
(43:27):
But mobility aids are definitelymy next step, I think, in
exploring options because, dude,I went to a concert or something
and between the mask, the standing, the heat, it was like
outdoors and was so hot. I literally did not, I couldn't
even enjoy myself. Like I, I, yeah.
(43:49):
So yes, I think mobility aids are going to be my next
exploration of focus. How can this better my life?
Because like they say, people who don't need mobility aids
don't think about how mobility aids would improve their life if
they had one. So note to me and also anybody
(44:09):
listening who resonates with that, that some, the thing
that's holding you back is internalized ableism.
And let's go find those mobilityaids before we speak next.
Yes, Yeah. OK, OK.
Thank you for being so candid about that because it, it really
is such a, a weird space to be in where you're like, OK, I'm
(44:32):
doing all these things for my health, but I like, I still feel
like I need help and that's sucha weird place to be in.
Yeah, especially when it's ambulatory when sometimes like I
feel so weird being at the gym. Like from the outside I feel
like I still look like a very able bodied person aside from
masking would be the only thing like at the gym.
I mean I guess now aside from like my knee braces and stuff
(44:53):
that I'm supposed to be wearing when I work out but they're
sensory nightmare so lol. Anyway, yeah, but then I'm like,
OK, how come one day I can, you know, lift XY weight and do all
of these active things and the next day I'm like, exhausted.
It's so yeah, like shifting people don't get ambulatory
(45:14):
mobility aids. They're like, oh, if you need a
wheelchair, why can you walk? Like people like Yeah, the.
International statistic is that one in three wheelchair users is
somewhat ambulatory. So Yep, Yep, Yep.
Yeah. Also I will say specifically for
concerts, after going to now a couple of concerts, I feel like
(45:37):
a rollator is the best way to gobecause it is lightweight, you
can decorate it however the heckyou want, and you can sit when
you need it and still like go fast and weave around.
Yes, that's that's exactly what I was looking at.
Yep. Yeah, I'm gonna do it.
I'm gonna have to do it after this conversation.
Like I'm realizing like, yeah, OK.
I'll send you stickers to put onit.
(45:59):
I love sticks. Oh my God damn I don't.
Oh Nope it's right here. Wait, I am obsessed with
stickers. Look at all my stickers on my
water bottle. I have another 64 oz one that I
just retired from 2017 that is also full of stickers.
So a relater or other mobility aid would be perfect to add to
my things that I sticker. Oh my gosh.
(46:20):
Infinite. Huzzah.
Wow, the episode description is just going to be huzzah.
Yes. Wow, Oh my gosh, I wish I did
like. Feel like yeah, like we need
like a the three hour like just recorded yap session.
I like to say I meet all my friends from the podcast and
(46:42):
then I just invite them back so I can hang out.
I when I tell you I am in need of like, like mind, like
disabled understanding, like it's so hard to be friends and
like be connected with people who don't realize their own
internalized ableism and who don't like get it about me and
like, you know, like. Yeah, yeah, OK.
(47:08):
Speaking of like friends, finding disabled friends, like
minded friends, what does your support system look like 'cause
I know you said your family is pretty like pretty
understanding. Yeah, yeah, they definitely
understand the the health, like the feelings of it, not as much
to be code conscious. That's been a very isolating
(47:30):
experience to kind of reintegrate that into my life
and well, actually like genuinely integrate it in a way
that is scientifically backed. But my partner and I, Katie,
she's awesome. We both mask everywhere.
Like she's the the most like tangible support that I have
right now, honestly. And that's an aspect that is
(47:50):
really hard about being disabledand making friends and having a
support system is like, not everybody gets it because
there's so much pervasive ableism and like we have to
learn to support each other. And I think that's what makes
making friends with other peoplewho experience, you know,
disability from whatever that looks like, like medical issues
(48:14):
or like from society or however combination of all of those in
between. Like it means so much.
It like there's such a, a deeperlayer of understanding and
connection cause. Yeah, it, it.
Yeah. So all that to say is the sports
system is small currently, but hoping to grow through things
like this and like meeting new people and getting involved in
(48:37):
disability justice spaces. I'm really excited to try to
find more of that when we move. My partner graduates in May of
this year. She's going to be APA.
So yeah, that's why we're in Indiana.
We're looking to move probably East Coast or Bay Area, wherever
(48:58):
she can get a job, hopefully somewhere with A at least access
to a wider disability justice, you know, activist space, COVID
conscious space. It's really rough to find.
But yeah, here's the hoping, hoping the support system can
grow in 2025. That's the that is the the goal.
Is that on your vision board? It is, it very much is.
(49:21):
I have like all of these like activism and like mask oriented
COVID conscious like I'm like this.
I have to. This is my calling.
I have to get involved in these spaces.
I just have to, yeah. And that is a really good way to
find like minded people like yousaid.
So I like that. That's almost.
Artistic too, and that, that really helps, yeah.
(49:43):
Yeah, yeah. What?
We all have a strong sense of justice.
That's crazy. And just limitless energy.
Oh my God. Yeah, it's amazing.
Limitless mental energy. Let me clarify.
Yeah, yeah, I'm gonna need a a nice long regulating nap after
this 'cause this is so, so energizing, but gotta gotta
(50:06):
bring it down, regulating it, regulating it back down.
Yes, yeah, OK. Well, I feel like I've really
gotten to know you, which is always really fun with a guest.
But on top of that, I feel like I understand long COVID a little
bit more. And like I would love to hear
more about your research in the future.
(50:27):
Because I mean, yes, obviously you should go to medical
journals and like get up to dateon different studies that are
going on. But it's nice to, like you said,
have like like minded individuals, find people your
own age and connect with their experience.
So thank you for sharing yours, it was great.
(50:48):
This is just literally so fun like this made my day, perhaps
even my week, perhaps even my month SO.
Well, don't say that it's only the first week.
That's true. That's true.
Well, for the listeners at home who maybe connected with your
story and maybe want to like chat with you more, where can
(51:11):
they do that? Yeah, so I am like infrequently
active these days on TikTok. I kind of have a platform ish
Cat G Sally is my handle. If you GM me on there, I may not
respond because I'm trying to limit how much I'm actually on
that app. My G, my Gmail, my e-mail, it is
(51:31):
Gmail, but you know, catsaladin@gmail.com is my
contact for e-mail. If you do that, that is probably
the better way to actually get ahold of me for things so.
OK cool. Can I ask, do you have, would
you want people to go follow youon Instagram?
Actually, yeah, yeah, I don't. Yeah.
(51:52):
Also another social media app. That might not be the quickest
way, but yeah. OK, so you are on social media,
you have Tiktok and Instagram, but you said that communicating
with you might be better via e-mail.
So yes, yeah, OK, OK. I like that very respectfully.
Old school, yeah. I want to regulate myself.
(52:15):
Social media isn't really helping very well so.
No. And that is smart, yeah.
I, I'm trying to go back to likereading the newspaper where I
have to like, I get my news. It's not actually the newspaper.
Obviously I'm going to like try to have a time.
This is all hypothetical. It's part of my plan, but the
time frame a couple times a weekwhere that is my news time where
(52:38):
I'm engaging in like, OK, what what's going on now about the
descent into fascism and generalfreak out time?
OK, outside of that, let's not be scrolling because girl,
that's not regulating my nervoussystem.
So that is trying to be old school trying trying to be old.
School. No, I I do like that.
(53:00):
I like having your designated news time.
I might have to steal that. Yeah, it's we'll see.
We'll see how how well it works.Yeah, well.
OK, might be fried, but it's OK,we're figuring it out.
Life is hard, we're all trying our best.
Exactly, Yeah. Well, Cat, it was amazing to
(53:21):
have you on the podcast listeners.
If you liked hearing cat chat about everything, which rhymes
and I love that. Go follow them on social media.
Send them an e-mail if you want to get in touch.
But otherwise, I'm Clark, this is Kat, and this has been
chronically the sickest podcast you know.
(53:48):
That's all folks. Thank you so much for listening.
If you liked this episode, clickthat follow up button on your
podcast app of choice to get notified every other week.
You can find the podcast on Instagram and TikTok at
Chronically the Sickest Podcast.Let me know if you have any
questions or just want to chat. I love hearing from y'all.
Until next time, I'm Clark, and this has been Chronically the
(54:10):
Sickest podcast you know. Disclaimer, this is a
conversational podcast and whilewe may share a diagnosis
journey, symptoms, and treatmentplan, this is not medical
advice. If you have any questions
regarding your health, please reach out to your doctor and
have a great day.
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Real.
(00:32):
Yes. No, I'm not gonna do this
without having an iced coffee. OK, well, welcome, Kat, to
Chronically the Sickest podcast.How are you?
I'm really good. How are you?
I'm doing well. We had a couple of technical
issues this morning, but we're here.
(00:53):
Yeah, made it. Well, for the listeners at home
who may not know who you are, can you tell me and them a
little bit about yourself? Yeah so I'm currently a
therapist and an air divergent coach.
I currently live and work in Indiana but do coaching kind of
across 50 states virtually. I also was in the past AUS
(01:19):
national team swimmer. I had to retire a couple years
ago due to long COVID, but I still feel like that's very much
an aspect of, you know, who I am, my identity, and it's kind
of shifted into many ways. But yeah, that's kind of who I
am, what I do and what's going on right now.
That's awesome. That was a really great, like
(01:41):
encompassing all of the things that someone would want to know
about you. OK, I have to ask.
You are a therapist of course, and it sounds like of course
you're not really doing as much like physical athlete work, but
like, do you have any hobbies? Like what are you doing for fun
when you're not working? Yeah, it's been definitely a
(02:02):
shift in trying to find what those things are in my life now
that swimming and athletics really can't be that filling
that role entirely like it used to.
Writing has always been a major passion of mine and I'm really
trying to lean back into that and intentionally, yeah, create
(02:22):
more 'cause I definitely, you know, get sucked into the doom
scrolling trap sometimes. And it's easy to kind of mind
numb our way through a lot of things going on.
But trying to intentionally reconnect with some of those
older hobbies like writing and passions like that, as well as
(02:43):
special interests and things I enjoyed as a kid is another one.
So I'm trying to kind of reconnect with sensory aspects
of movement like swimming and like you know, going on walks
and being in nature. But trying to connect it from a
enjoyment focused and feeling better focused way rather than a
kind of achievement focused, youknow, experience like swimming
(03:07):
or athletics is often. OK.
I like that. Focusing more on the somatic
versus achievement exercises, OK, I like that.
OK. It's definitely work in
progress, but yeah, it's a very weird deconstructed.
Like it feels very unattainable at times to actually connect
(03:27):
with, you know, enjoyable thingsin that way when you're so used
to just having your interests and the things that you kind of
find pleasure in be so focus on achievement and like pushing
down how you feel all your life.Like you can't do that when you
have a chronic illness and when you're disabled, like you just
(03:48):
can't. Yeah.
So those are kind of my hobbies right now, I guess trying to
figure out my hobby is myself, trying to figure out how I live
my life. Like that's my that's how I
spend my time, my hobby. But.
That's a good answer. It's like, what do you do for
fun? I don't know.
Whatever. I feel like.
Yeah, trying. Trying to exist, like trying to
(04:10):
feel OK, that's my hobby. See that feels more like an
achievement based thing is trying to exist 'cause you're
like oh brush my teeth. Yes, it is.
It is. And honestly, like, that's where
achievement really does come in handy of like kind of
reconnecting with goals and things in a way that used to be
so like healthy for me. And I was protective factor
(04:34):
being an athlete growing up, knowing how to set goals,
learning how to have discipline.And I've really lost how to
connect that to my general life in a way that isn't big picture
goal oriented because like with swimming, I was so focused on my
health because, you know, I wantto go to the Olympics.
I want to do this, that or the other.
But now those achievements have to be like, oh, I brush my
(04:58):
teeth. Oh, I, I slept like 10 hours
last night. I actually, you know, I feel OK.
I can actually write. I can do the things I want to
do. And shifting that perspective
of, OK, these accomplishments are not the grand scale, like
huge, you know, physical feat things that I once dreamed of.
But they are just as important. And they are, Yeah.
(05:23):
Just as like I, I, I have such along life ahead of me.
And if I keep focusing on thingsthe way that swimming and
athletics taught you how to and capitalism it, it goes wider,
like how to set goals and achieve them.
Like I'm never gonna feel OK so.OK thank you, I I feel like I
(05:46):
learned a lot from you just answering like 2 questions.
That was insane. I tend to go on like info dump
feels, and then I'll like, get through like 30 seconds of me
just yapping, and then I'll kindof like come back into my senses
and be like, wait, did any of that just make sense?
So I'm glad that you had that response, because yeah, my
(06:08):
autistic brain works very monotropically, as I've
realized. I get you.
You're good. You're on like a monorail and
you're just like going and you're like, this is not a high
speed train. This is a conversation.
Exactly, yes. I do the same thing.
You're all good. Yes, it did.
It did make sense. And I I do feel like I have
(06:29):
gotten to know you a little bit more, so I'm hoping that the
listeners did as well. But you had mentioned a little
bit at the beginning that you were like an Olympic athlete and
then you got trying. Yeah, trying.
I would, wow. I was really about to be like,
we're all trying to be Olympic, Olympic athletes.
(06:51):
And then I thought about it and I went.
I am not, but to be fair. That is like the goal of, like,
success that we're kind of like,you know, taught is the ultimate
things like going to the Olympics or like doing the big
thing. Like, yeah, we are kind of in
some ways we're all trying to beour own version of success, I
guess. You made that way deeper than.
(07:13):
I have a tendency to do that. Wow, crazy.
It's almost like you're a therapist.
It's almost. Like I made my special interest
like my entire livelihood. Wow.
OK. So you were a professional
athlete, you were doing that, you were working towards
something and then you got long COVID.
(07:34):
And I know that that diagnosis process in particular is kind of
a little wonky. So talk me through that.
Like what was your experience with that?
Yeah, so I, I had actually come off of like just recovering from
really severe overtraining syndrome for a couple of years
and I was finally back to feeling pretty close to 100%.
(07:56):
Like I looking back, I should have been a bit more cognizant
of not over pushing my body evenafter like recognizing that
overtraining diagnosis because Imean, even what I was doing then
after, you know, decreasing my training load, it was still
probably a bit too much. But I was finally feeling a lot
better before I got COVID for the first time in January of
2021. And leading up to that,
(08:19):
obviously everything was still pretty shut down.
Like we had some meats here and there, but nothing big enough to
where I actually got to kind of prove my like come back, so to
speak. But my training was going really
well and I was really excited for open water nationals that
spring. And I'd actually stayed home
(08:39):
from like going to the University of Rutgers, sorry,
Rutgers University, where I transferred to from University
of Alabama in order to prevent getting COVID, like during that
time between, you know, lockdowns.
And I wanted to have a consistent training schedule.
So I sacrificed like college to essentially not get COVID and
(09:02):
focus on my training and my health and ended up getting it
anyway. And I, you know, when I first
tested positive, I had my littlelike mental freak out moment of
like, shoot, this is going to keep me out of the water for two
weeks. I was not expecting the actual
effects that I experienced at all because of course my mind
(09:24):
was like, oh, I'm young and healthy.
Like I'm an elite athlete. Like how would this like,
there's no way I would, you know, I'll just take my two
weeks. It'll be OK, I'll be fine.
And it, it just definitely was completely the opposite.
I was like so fatigued, so fatigued.
This just like bone crushing, deep bone tired feeling that
(09:45):
like I, I felt like I couldn't even walk upstairs at times,
like I'd have to kind of like sit down and take breaks and it
would very much ebb and flow. So I ended up moving out to New
Jersey after I kind of recoveredbecause, you know, at the time
there was more of a belief that you couldn't get it again or
like now you were immune or, youknow, all that kind of like
(10:06):
actually not actually scientifically accurate
information that we kind of society tends to still believe.
But regardless, I moved out there and my college coach just
obviously I was, I was somethingso bad.
Like it was, it was so bad. I was going to doctors at the
university, sports Med specialists, like for a year,
really no one could tell me anything other than like, oh,
(10:28):
it's stress, it's anxiety. Like you're fine.
I tried everything. Like I, you know, I was
researching intensely all the time of how to fix myself and
really nothing truly helped. I would go through period, like
I'd have a couple weeks of like feeling better ish swimming
(10:51):
decently well, I'd get that glimmer of like, oh, wow, I can
do this. And then I'd crash And like it
would not there was no room to, you know, take a morning off.
I would skip practice and, you know, say I'm sick.
But that was also met with, you know, how could you possibly be
sick this much? You're fine.
Get get out of bed. You know, so I never actually
(11:14):
even got any kind of like periodof time to rest.
And we all know that, you know, chronic illnesses, any kind of
disability, rest is a huge important factor in how you
recover and how you generally feel today day-to-day.
So because I didn't get that andbecause doctors were just
telling me like it's all in yourhead, I did not get any like
(11:36):
medical help at all until like almost a year and a half.
I feel like someone finally mentioned, oh, this is COVID or
maybe someone had mentioned, oh,it was probably COVID related,
but it'll go away. That was kind of the vibe.
Like just do keep doing what you're doing, ignore it.
It's anxiety mostly. You're fine.
And then I kept asking for a tilt table test 'cause I saw I
(11:57):
was researching a lot of people had POTS and was getting, were
getting POTS from COVID And I was like, oh, this makes a lot
of sense. This sounds like me.
I asked my cardiologist multipletimes like, hey, can I have a
tilt table? They did a stress test.
Those are not the same test at all.
They're like, oh wow, your stress test is totally normal.
You're fine. And I'm like, girl, no, I'm not
(12:19):
actually. I literally feel like I'm going
to die. So finally, after I retired from
swimming, I kind of made the decision after Purdue versus
Rutgers in 2022 dual meet, whichactually it was I I'm not mad
that that was my last meet because we beat Purdue and that
(12:40):
was really fun, especially now that I live in Indiana.
I'm like, haha, wreckers, but nice.
I was sitting on the locker roomfloor after my 500 free MI 2 IM
and I did with them back-to-backand I like, I swam OK, like not
well, but like, you know, well enough to previous me would have
(13:00):
been like, oh, I can keep pushing, I can keep pushing.
But I was sitting on the locker room floor like unable to see
'cause my, I was so faint and like some I was like, this is
not right. I'm missing the whole rest of
the meet. I'm not out there cheering with
my team mates because I can't get off the, the floor.
And it was kind of in that moment when I was like this, I
cannot keep pushing my body through this.
(13:22):
Like I have to stop. And it was finally after I made
the decision to retire that I switched to a different
cardiologist. He ordered the tilt table
finally. So, you know, maybe had they
listened to me earlier, I could have gotten treatment.
Maybe I didn't. Maybe, you know, I always go
through the maybe things could have been different had doctors
freaking listened to me. But, you know, of course.
But yeah, ended up, yeah, getting treatment and support
(13:47):
finally. And yeah, here we are.
That was January of 23. Finally got medication and
lifestyle support, rest and feeling a lot better now, but
still definitely a day-to-day aspect of, you know, my life and
my identity even because, yeah, a lot of what I experienced.
(14:10):
Yeah, of course. I mean, there are a lot of
things that are a part of our identities because like you
said, yeah, it's like daily you wake up and you go, oh, these
things affect me a lot. That would make sense.
Right, right. Yeah, exactly so.
Can I ask when? OK, wait.
OK. Wow.
First of all, huzzah. You got your I.
(14:33):
Love that you say. Huzzah, I say that like all the
time. Did you watch the show The Great
I Literally that was I I, I never finished like I think the
third season, but I quote that show.
The third season sucked. Yeah.
Thank you. Thank you.
It was not historically accurateand I understand none of it
really was, but like they sorry anyway.
(14:53):
But yes, it's a great show. OK, huzzah, huzzah, that you
agree, 'cause I couldn't get through it and I was like this,
oh man, OK, but yes, huzzah. Thank you.
Oh my gosh, everyone at work, whenever I say that, they're
like, you're so weird and quirkyand I'm like, no, I'm just
autistic and I like the great. Like, I don't.
Yes, period. This is great.
(15:16):
I love it. But it's great that you got your
diagnosis finally. You got a new Doctor, which is
always like, so like, such a relief when you get a new Doctor
and they actually, like, hear you and do what's necessary.
And you're like, oh, my God, I spent all this time with this
stupid insert swear word here. Yeah, and I could have just gone
(15:38):
to a different person who listened to me.
They were in the same practice, like they were literally in the
same practice and I they were 45minutes away from where I was in
New Jersey and the the sports Med people.
And that's another thing about NCAA Division one athletics that
I think a lot of people like what was my experience dealing
with chronic illness in that environment is they are kind of
(16:00):
in control of your health. Like there are many times where
I would try to advocate for myself of like, hey, can I like
see the specialist? But because they kind of own you
in many ways, like their insurance and your insurance,
like they're supposed to be the ones setting up all of these
appointments are helping you through all of this process.
And they don't like it when you kind of try to take that
autonomy into your own hands andlike fight for your your
(16:24):
medical, like advocate for they don't like advocating.
They like you to be a very specific way in in every you
know, in true in true capitalismdriven fashion.
Of course. But yeah, they were in the same
practice. I just happened a year later to
get assigned to Doctor Tulo. I believe that's how you
pronounce his name in New Jersey.
(16:45):
Shout out to him 'cause he's awesome.
He actually listens to you. If you have POTS and suspected
EDS or anything like that, he ordered the tilt table, told me
that like my hypermobility, he'slike, yeah, it looks like you
have HSD or HEDS. Haven't gotten a formal
diagnosis for that, of course, because, you know, a geneticist
is a three-year wait list, of course.
(17:06):
So that's great. But he was the first person to
actually explain to me how all of these things interconnect.
And that's honestly what kind ofled me down the rabbit hole of
realizing that I'm autistic too.Because like, Oh my God,
everything is interconnected. Everything makes so much sense
now. I hate that I had to find out
about it this way through all ofmy own individual research.
(17:27):
But I guess that's fine 'cause Ilike research.
So, like, all right then. But yes, great, when you finally
get someone to take you seriously, listen to you.
Yeah. And it sounds like your doctor
was informed in the sense that these things are connected
because most doctors are just like, this is my specialty and
(17:50):
you're like I. Yeah, he still wasn't masked,
which is a tough one. And that that one is a big
conundrum for me. And in like all of this is a
major commentary. I actually have two masks here,
like sitting right here for the part where we talk about like
supports and things for people dealing with this.
But that's a major, major complaint with the medical
(18:13):
field. Like even the people who are
supposed to be like long COVID researchers and all of this,
like you're like, girl, you're not wearing a a mask like, or
you're wearing a surgical. Like what are you doing?
I'm sorry, are you reading your own research?
Like, OK, Anyway, they're like. No, I'm young and healthy.
Yeah, yeah, exactly. Like bitch, I literally was 10th
(18:35):
in the world in the 25 kilometeropen water race.
You think I wasn't fucking youngand healthy?
Sorry, I don't know if I'm allowed to swear.
You're good. You're allowed to.
OK, good. I just try not to so I don't get
in trouble. OK.
Wow. This is I love this episode best
friends me anytime an autistic guest is on the podcast me I
(18:57):
love you can. You tell like, don't have enough
like social interaction. Oh, wait.
Yes, I yes, and. Yeah, huzzah.
Anyway. Huzzah OK so you got your cool
new Doctor. He doesn't mask, but pros and
(19:18):
cons with getting diagnosed withPOTS And you kind of saying that
it's likely that you were experiencing POT symptoms
because of long COVID and like your experience with the virus.
Like, talk to me, talk to me about that.
Like when you got your POTS diagnosis, was that something
(19:40):
that your doctor was like, hey, I think that you got it from
this? Like how?
Like how did you equate those things?
Was it just from your research? Yeah, after he explained the
dysautonomia because I mine is confusing.
I, I say pots because that's theone that people like actually
know what it is. And he even when he was
explaining it, it was like. You know, a mixture of lots of
(20:03):
different weird shit going on with my autonomic nervous
system. So pots disautonomia, I'll just
say disautonomia because that's probably more accurate.
But I as soon as I found out about it, I was like, Oh my God,
this explains so much. Not only just about like what
I'm now experienced with COVID, but also my mom has Epstein Barr
syndrome and she's had that since she was 17 and in high
(20:24):
school. And she, I grew up understanding
kind of hearing her talk about how she got mono her senior year
of high school and was doing so much.
She was dancing at Disneyland. She was a very like similar to
me in the like performance aspects of her life.
Like she was an IB student at a very high level high school.
(20:46):
She was like, you know, sleepinga minimal amount because she was
dancing at Disneyland in the parades as a 17 year old high
school student and like doing all of this incredible like
dance like athlete stuff. And she got mono and literally
for a year basically didn't go to school and didn't, I wasn't
able to do much because of how ill like she was constantly and
(21:07):
like not being able to stay awake.
Like she would fall asleep doinghomework in like the recliner.
And I've heard about this growing up.
And then I also remember on hikes and standing up, she would
often get like that blackout light headed feeling that like I
now experience from COVID. And it was always unexplained.
(21:29):
But once this doctor started explaining dysautonomia to me, I
was like, wait a second. So I went down the deep dive
rabbit hole of being like, Oh mygosh, this connects to my entire
family's neurodivergence. And likely a lot of us are
autistic, ADHD or therein aboutsmixture of all that we all have
(21:53):
some semblance of health viral induced or otherwise related
issue. We all have these weird
disautonomia type things where we get like my dad even though
he doesn't have the same like disautonomia like standing up
specifically POTS type episodes.He'll get migraines and like
(22:17):
weird, I think like just a bunchof weird autonomic nervous
system shit. And I went down the rabbit hole.
Research is like, Oh my God, allof this, all of it's autism and
all of it's like nervous system.It's all, it's all of this.
And I like it became like such ahyper focused special interest.
But now I literally, it's so bad'cause I have to balance the
(22:41):
research monotropic aspects of being autistic, of researching.
Last night I stayed up till literally 7 in the morning
researching and creating this document of how to build my life
to be the most like nervous system regulating and autistic
slash chronic illness focused life that I possibly can build.
But I need sleep. So what I'm planning on doing
immediately after we get off thecall is go and sleep for three
(23:02):
or four hours to like try to compensate, to try to be like,
OK, if I have to be monotropic at night or like in these
extended amount of times and I'msacrificing sleep, like where
else can I build that into my day to make myself more
functional? Because I can't do this
capitalistic, like just grind until you die.
Like I can't do it anymore. I just can't.
(23:23):
So I have to like be intentionalabout building my life around my
needs. And I feel like my parents and
my mom and people in my family do do those things to a certain
extent without the language. And I feel really fortunate to
be able to have the language in the like scientific
understanding of like why I experienced what I experienced,
(23:44):
why my whole family experiences what it, what we all experience
with health and neurodivergence and how those intersect that
like, I'm like, wow, I feel hopefor the first time of like being
able to do like make a life thatactually feels like I can live
it, unlike, you know, life before, where it's just like,
don't ever stop trying and pushing your body's needs away
(24:07):
and focusing on this goal. Right, OK, OK, first of all, you
gotta, you gotta let me know when you put your your optimized
functionality paper out 'cause Iwill be grabbing that.
No, that's genius. Hilarious that you're like and
(24:27):
I'm trying to regulate my nervous system, but I did stay
up until 7:00 AM doing this so. Yes, it is a fine balance I have
found and I'm listening to the Autistic Culture podcast, Which
major shout out to them. They've helped a lot in
understanding all of the intersection, you know, aspects
(24:47):
of this. But yeah, ideally the goal would
be to kind of like take this life experiment.
I have to put approach it very autistically of being like, OK,
this is my life experience to like take care of my meat suit.
And I'm going to record all of my results of this experiment.
And then I'm going to be able touse it to write my, my book
about my swimming experience andhow neurodivergence and chronic
(25:08):
illness should be more accommodated and how generally
disability justice is needed andblah, blah, blah, blah, blah,
blah. Anyway, So yes, hopefully that
actually happens. Oh my gosh, yes.
I literally have, I have a wholebookshelf just full of chronic
illness and autism and I, I likebooks that are like, good.
(25:28):
So I, I can't wait. Oh my gosh.
First, first for sale right here.
OK. But it does sound like your long
COVID research was like personalresearch after kind of getting
your, your dysautonomia diagnosis.
And like you said, post viral malaise is so common.
(25:53):
And yeah, first of all, not first of all, this is like
seventh of all, now that I'm talking, but my mom is also
autistic and has EBV. No way.
Sorry. You were talking and I literally
was like. Dude, no way, no please.
Like, I mean, I guess it's a podcast, so it's hard when we're
not just like yapping. And I always do that with like
(26:14):
just in regular life, but that is wild.
That makes so much sense. Potsies, listen up, we both know
that presyncopy sucks. Fainting too.
Passing out when you're alone though, that is 2 thumbs down.
It's so nerve wracking. Like what if I pass out and hit
(26:37):
my head or I start getting dizzywhile I'm driving?
Am I gonna be safe? Or just in general, am I gonna
be safe as a disabled woman? That anxiety, that is what gets
you. But I don't have that anymore.
Well, I do have anxiety. I am an OCD girlie, but not
(26:58):
about passing out or my safety because I just click my invisi
wear necklace and both my familyand emergency personnel are
alerted. The dizzies are scary no matter
how many times it happens. But knowing that I have a backup
plan is what makes me feel a little bit better, so maybe
that'll help you too. Using code sickest for 10% off
(27:21):
on your invisible wear purchase at the link in your description
is an option. Sending you salty vibes.
Okie dokie. Anyway, let's be so for real
y'all. We are fatigued.
We are fatigued girlies. We have brain fog and there is
not much we can do about it because that's just a part of
having chronic illness unfortunately.
(27:43):
What if I told you that that wasnot the case?
Well, you know that like we can't do anything about it.
I am partnering with Brainzyme, a energy and focus supplement
made in Scotland. So you know it's not USFDA mumbo
jumbo and it works to fight fatigue using natural
ingredients which we love. So if you are interested, go to
(28:06):
Brainzyme dot US today and get their trial pack with a money
back guarantee plus some extra money off with code sickest 10.
It's a lifesaver I swear. Anyway.
That's, yeah, so interesting, yeah.
Like it's like. Yeah, I, that's what gets me
(28:29):
with like advocacy and stuff andwhy I feel so passionate about
it, like talking about these things because like your mom, my
mom, so many older generations of people who like don't have
this language and understanding.And it's like, dude, your life
could be so much better if you just understood yourself through
the context of this lens. Like seriously, I, I cannot
(28:51):
stress that enough. And it's hard to not just like
look at here's someone's life and like be in a, in a normal
conversation, just like with a friend or with a, a person,
especially if they're a bit older and they don't, aren't as
like aware of, you know, ableismand things and how we need to
deconstruct that. But it's so hard to just be
like, so have you ever thought that you're autistic or like,
(29:12):
have you ever thought that you might be disabled?
Like it's so hard to, because I see that as such like a
positive. Like, yeah, I understand this
about myself Now I can change the things I can change to like
better my life. And obviously, you know, things
are not always peachy and there's so many.
I mean, it's called a disabilityfor a reason.
It's not sunshine and rainbows, but like accepting that you are
(29:33):
disabled and like constructing your life around that fact is so
freeing. And I wish more people
understood that. But it makes me feel so much
more hope for people like my momand your mom or people in these
older generations who like have been like can really deeply
understand so much of the context of their lives through
(29:54):
this lens. Now that we have so much more
research about how viral things and just like the intersection
of neurodivergence and chronic health issues.
Cause yeah, I, I feel like all before everybody just felt like
they were lazy and like, I mean,that's still a thing, but
obviously. But I feel like it's it's, it
was really bad in previous generations.
(30:17):
Yes, it is nice now that the younger generations are like,
oh, there's a word for what I'm feeling.
And sure, not everyone who is neurodivergent or has a chronic
illness considers themselves disabled.
Like that's OK. But being able to be like, oh,
for older generations, like you said, just to be like, oh, like
(30:39):
this is nice to have a word for it.
It doesn't mean I necessarily have to like.
A dirty word. Yeah.
Yeah. You can take all the positive
aspects of this label and this identity and the accommodations
that come with it and leave all of the stuff that doesn't make
you feel supported and good. Like that's, that's the point of
it, right? Like labels.
(31:01):
I was actually just thinking about this the other day of
like, you get a label regardlessof what your label.
Like you get to choose what labels you have and labels are
going to happen regardless. So if you don't label, if a
label isn't autistic and disabled or chronically ill or
having, you know, needing supports whatever label feels
(31:21):
best for you. If you don't have that, you're
going to get lazy, stupid, like all of these other things that
we get. So why not choose the one that
actually is accurate and scientifically supports you?
I don't know, maybe ableism is the cause, but.
Yes, OK. Oh my gosh, this is great.
(31:45):
I love. This I this is I, I love yapping
about this stuff. No, it's great.
And it's like nice to have almost like a like a context for
it, you know, to have people be listening to this and being
like, oh, like I relate to this or this is important to me.
And you're like, oh good. Like we're connecting over
something we both agree on. Yeah, that's a special thing
(32:10):
that like, I feel like we people, humans need to
experience that more. I feel like like true
connection, autistic connection.It's it's it's very special.
The girls that get it, get it. Oh my gosh.
OK. Sorry, I like my brain wants to
like go off on a tangent, but I'm like Oh my God, no wait, I
(32:32):
have. Whatever.
Yeah. No, there's a post pod episode
that we usually do like a littlebonus to like talk about shit
that we don't actually talk about on pod, like the stuff
that we're talking about. I know.
So I would love to do that with you because this feels like it's
going to be just like special interest extravaganza.
I would love that. OK, OK.
(32:55):
And then you can go take your nap.
OK, so before we move into kind of the tips and tricks part of
the podcast, can you just quickly tell me the symptoms
that like you are experiencing as a result of your long COVID,
your disodonomia? So these days it's definitely
(33:16):
still the passing out feeling orlike the Lightheadedness when I
stand up or over exert myself orjust generally I'm not
supporting myself in the way that I, you know, logically, no,
I should be like if I don't get enough sleep, if I'm not eating
enough, if I'm not getting my salt packets, like you're not
going to feel good, girl. Like I don't know what to tell
(33:37):
you. So like that's definitely there.
But with the lifestyle changes with the salt and like resting
and trying to sleep as much as Ican and like going on walks for
exercise, that makes the symptoms pretty negligible.
But to the point where like yes,it's still there, but I can do
(33:59):
what I want to do. So when I'm not in a flare, I
feel definitely still like I have to pace myself and like
spoons are very real for me for sure.
But the long COVID specifically with this autonomia, that's not
as much a major kind of limitingsymptom these days when I am
(34:20):
correctly supporting myself, of course.
But the joint pain, EDS stuff that has been majorly limiting
me recently I was diagnosed withlike early onset arthritis in my
knees from apparently just like hypermobility and the joints not
being correctly. They're like rubbing I guess.
(34:43):
So, you know, those are kind of the symptoms that day-to-day
more, I guess what's the word flare and brain fog whenever I
get on a roll and then I'll justkind of like all of a sudden
lose my train of thought and be like, wait, case in point right
there. Brain Brain fog and fatigue are
like the silent killers when it comes to any chronic illness.
(35:05):
Yeah, yeah, yeah. And COVID is a yeah yeah.
Yeah, I can. Get on my soapbox about that all
day. It's so hard because the
intersections of like long COVIDand neurodivergence with like
sensory issues and stuff are rough when masking is the only
thing that's like actually effective Sucks.
(35:26):
Believe me, I I get it. Going to the gym in a mask, not
fun. But also the sensory issues that
come along with getting COVID and getting long COVID and being
disabled by COVID, which can happen to anyone at any time.
That's way worse. So I try to like in my brain be
like, OK, you can deal with the sensory issue of the mass.
Think about how much worse it would be if you had all of that
(35:47):
horrible fatigue worsened again by another COVID infection.
So it is constant cost benefit analysis of, you know, dealing
with all of the intersecting issues and how you feel.
I like that the cost benefit analysis 'cause it's right.
It's really is like pro pros cons, you know like yeah,
obviously no one wants to wear amask.
(36:08):
I get it. I get the anti maskers.
I think there's but. Anyway, again, probably cut
that, but. No, you're good.
The I don't need. My family knowing that right
now, but. You're good.
Anything that gets cut is behinda pay wall.
(36:28):
So if they want to pay me $3, sure they can hear all about
this. But I love that I'm just like,
well, this is the content you guys want I guess.
No, I would love OK, we're goingto get back to the actual stuff.
But before that? OK, so now that we know, I'm
(36:51):
going to pretend like this entire part never happened even
though this was so good. I'm so excited right now.
OK, so now we know a little bit about your diagnosis story and
your symptoms. Tell me a little bit about the
tips and tricks that you have because I know that you brought
props to share and I love that as like a guest experience.
(37:15):
A visual aid so these are a couple of masks that I now where
I you know there was a period oftime of course fell for the
propaganda of COVID smile now blah blah blah yes there was a
period of time where I was not masking properly disclaimer now
I learn better I do better and this is where you can learn to
(37:36):
do better too KN 95 is good because they're often cuter
they're ear loops This is a wellbefore relatively comfortable
you know sensory blah blah theseare the types that I work out in
when I do want to go to the gym or do anything more intense
indoors they are much more breathable but they're ugly
(37:59):
obviously and they. Are.
Yeah, it looks a little bit likea.
Diaper yeah, when they say sure when they when they judge
maskers for with diaper on the face like I, yeah, I, I do see
it you're valid in saying that but like, am I also not going to
have worsened disability symptoms because of COVID?
Yeah, yeah, yeah. I haven't been sick since like
(38:20):
over a year ago. So yeah.
So yeah, masking number #1 of tip, like please just just look
into it, you know, open your mind to the possibility that
masking or, you know, just beinga little bit more COVID
conscious is, you know, part of a lifestyle that would be
helpful for you and people in general.
(38:42):
Even if you are temporarily ablebodied in every way, masking and
understanding how COVID can impact the body is probably the
number one health tipper trick that is most important.
And then obviously then leading into that excess, assessing your
accessibility needs and what youneed to best support yourself
(39:04):
individually, whether that be, you know, sleeping a lot or
making sure you have time for naps or, you know, using things
like CBD or like pain topicals or whatever, whatever, things
like that. Like allow yourself to kind of
be high maintenance. I feel like there's a, there's a
(39:25):
view of like, oh, they're so high maintenance.
Like that's so, so extra like you're doing too much like, no,
if you have the means. And obviously that's a major
issue. It's like the accessibility for
disabled people to get the support they need, like major L,
which I feel like I can't get onthat soapbox now.
I got to, I got to, I got to stay on track.
But yeah, trying to assess wherein your life your accessibility
(39:49):
needs could be made more accessible, yeah, could be met.
And that will lead you to a morelike generally feeling better
life that looks different for everyone.
Absolutely, absolutely. That's AI think that's just like
a great overarching like tips and tricks like thing to have is
(40:13):
just assessing your own needs and then doing those things and
researching it. Cause yeah, like you said, masks
like yes, like they are not a great sensory experience.
So if you assess your needs and you go OK, I feel like I do need
to protect my health when I go outside, but at the same time,
gross. I don't want like a weird
chicken beak diaper looking thing on my face.
(40:35):
Then then yeah, like research online, like go out and find
something that works for you andis comfy like you said.
Wait, what was the brand you said that you the red one that
you Sorry for listeners. There's a video.
See this is the well before can 95 pretty breathable 1 issue I
do have that I have not a mask that I haven't tried yet, but
(40:56):
maybe could be a more sensory friendly option that I'm looking
to try is the ready mask. They're an adhesive.
Oh, straps, it's much it's pretty breathable from people
like reviews again, I have not. Hopefully maybe by the next time
we talk I'll have try them and Ican give a little spiel.
But yeah. So if you're bothered by straps
or, you know, ear things, I knowthat's like an issue for me
(41:19):
sometimes is it gets painful behind my ears.
That might be an option of something you can use to protect
yourself if need be. Things unlike public transport,
doctor's appointments, things where like, you know,
necessities, where disabled people deserve to go and you
deserve to go and not get ill from that space.
Yeah, yeah. OK.
(41:39):
Oh my gosh, I'm going to look into that because that sounds.
Kind of, yeah. Can we get a sponsorship for the
mask brands mentioned? Hey, well before do you want to
sponsor us? The The Mask brand, the podcast,
Duncan, if you're hearing this, I think this another podcast.
This is just yeah, guys, public service announcement.
If you would like to sponsor thepodcast.
(42:01):
If you would like to sponsor Cat.
By sponsoring us with our accessibility needs, please.
Thank you. Like guys, we can appeal to a
different audience. Yeah, no, I'm, I'm trying.
I put a vision board together recently where I was like, these
are the brands I want to work with and some of them.
That's such a good idea. That's such a good idea.
(42:22):
Did you, did you just do recently do a vision board?
Three days ago, three days ago. I, I'm about to print out all
the pictures and make it becauseI, I'm in my research phase
right now to find the most accurate images to put on my
vision board. Of course, obviously Joe March
is on there because obviously I have to like embody Joe March
and everything I do. From Little Women.
Yes, Slay. Yeah, anyway.
(42:43):
My bad. Oh, my God.
Wow, Listener, this is way more of a chatty episode, but
honestly, I love it. So I feel like you guys should
too. Yeah, they're here.
Great. OK.
OK. I like this.
I like this. So yeah.
Assessing your own needs. Masking of course, is an obvious
(43:06):
one. Do you use any mobility aids at
all? I know that for a lot of people
fatigue is a really hard thing with on COVID, so do you use
anything for that? I I have braces that I now use
with the knee pain and the like fatigue.
It does help with standing and walking.
I was using KT tape to help support my joints.
(43:27):
But mobility aids are definitelymy next step, I think, in
exploring options because, dude,I went to a concert or something
and between the mask, the standing, the heat, it was like
outdoors and was so hot. I literally did not, I couldn't
even enjoy myself. Like I, I, yeah.
(43:49):
So yes, I think mobility aids are going to be my next
exploration of focus. How can this better my life?
Because like they say, people who don't need mobility aids
don't think about how mobility aids would improve their life if
they had one. So note to me and also anybody
(44:09):
listening who resonates with that, that some, the thing
that's holding you back is internalized ableism.
And let's go find those mobilityaids before we speak next.
Yes, Yeah. OK, OK.
Thank you for being so candid about that because it, it really
is such a, a weird space to be in where you're like, OK, I'm
(44:32):
doing all these things for my health, but I like, I still feel
like I need help and that's sucha weird place to be in.
Yeah, especially when it's ambulatory when sometimes like I
feel so weird being at the gym. Like from the outside I feel
like I still look like a very able bodied person aside from
masking would be the only thing like at the gym.
I mean I guess now aside from like my knee braces and stuff
(44:53):
that I'm supposed to be wearing when I work out but they're
sensory nightmare so lol. Anyway, yeah, but then I'm like,
OK, how come one day I can, you know, lift XY weight and do all
of these active things and the next day I'm like, exhausted.
It's so yeah, like shifting people don't get ambulatory
(45:14):
mobility aids. They're like, oh, if you need a
wheelchair, why can you walk? Like people like Yeah, the.
International statistic is that one in three wheelchair users is
somewhat ambulatory. So Yep, Yep, Yep.
Yeah. Also I will say specifically for
concerts, after going to now a couple of concerts, I feel like
(45:37):
a rollator is the best way to gobecause it is lightweight, you
can decorate it however the heckyou want, and you can sit when
you need it and still like go fast and weave around.
Yes, that's that's exactly what I was looking at.
Yep. Yeah, I'm gonna do it.
I'm gonna have to do it after this conversation.
Like I'm realizing like, yeah, OK.
I'll send you stickers to put onit.
(45:59):
I love sticks. Oh my God damn I don't.
Oh Nope it's right here. Wait, I am obsessed with
stickers. Look at all my stickers on my
water bottle. I have another 64 oz one that I
just retired from 2017 that is also full of stickers.
So a relater or other mobility aid would be perfect to add to
my things that I sticker. Oh my gosh.
(46:20):
Infinite. Huzzah.
Wow, the episode description is just going to be huzzah.
Yes. Wow, Oh my gosh, I wish I did
like. Feel like yeah, like we need
like a the three hour like just recorded yap session.
I like to say I meet all my friends from the podcast and
(46:42):
then I just invite them back so I can hang out.
I when I tell you I am in need of like, like mind, like
disabled understanding, like it's so hard to be friends and
like be connected with people who don't realize their own
internalized ableism and who don't like get it about me and
like, you know, like. Yeah, yeah, OK.
(47:08):
Speaking of like friends, finding disabled friends, like
minded friends, what does your support system look like 'cause
I know you said your family is pretty like pretty
understanding. Yeah, yeah, they definitely
understand the the health, like the feelings of it, not as much
to be code conscious. That's been a very isolating
(47:30):
experience to kind of reintegrate that into my life
and well, actually like genuinely integrate it in a way
that is scientifically backed. But my partner and I, Katie,
she's awesome. We both mask everywhere.
Like she's the the most like tangible support that I have
right now, honestly. And that's an aspect that is
(47:50):
really hard about being disabledand making friends and having a
support system is like, not everybody gets it because
there's so much pervasive ableism and like we have to
learn to support each other. And I think that's what makes
making friends with other peoplewho experience, you know,
disability from whatever that looks like, like medical issues
(48:14):
or like from society or however combination of all of those in
between. Like it means so much.
It like there's such a, a deeperlayer of understanding and
connection cause. Yeah, it, it.
Yeah. So all that to say is the sports
system is small currently, but hoping to grow through things
like this and like meeting new people and getting involved in
(48:37):
disability justice spaces. I'm really excited to try to
find more of that when we move. My partner graduates in May of
this year. She's going to be APA.
So yeah, that's why we're in Indiana.
We're looking to move probably East Coast or Bay Area, wherever
(48:58):
she can get a job, hopefully somewhere with A at least access
to a wider disability justice, you know, activist space, COVID
conscious space. It's really rough to find.
But yeah, here's the hoping, hoping the support system can
grow in 2025. That's the that is the the goal.
Is that on your vision board? It is, it very much is.
(49:21):
I have like all of these like activism and like mask oriented
COVID conscious like I'm like this.
I have to. This is my calling.
I have to get involved in these spaces.
I just have to, yeah. And that is a really good way to
find like minded people like yousaid.
So I like that. That's almost.
Artistic too, and that, that really helps, yeah.
(49:43):
Yeah, yeah. What?
We all have a strong sense of justice.
That's crazy. And just limitless energy.
Oh my God. Yeah, it's amazing.
Limitless mental energy. Let me clarify.
Yeah, yeah, I'm gonna need a a nice long regulating nap after
this 'cause this is so, so energizing, but gotta gotta
(50:06):
bring it down, regulating it, regulating it back down.
Yes, yeah, OK. Well, I feel like I've really
gotten to know you, which is always really fun with a guest.
But on top of that, I feel like I understand long COVID a little
bit more. And like I would love to hear
more about your research in the future.
(50:27):
Because I mean, yes, obviously you should go to medical
journals and like get up to dateon different studies that are
going on. But it's nice to, like you said,
have like like minded individuals, find people your
own age and connect with their experience.
So thank you for sharing yours, it was great.
(50:48):
This is just literally so fun like this made my day, perhaps
even my week, perhaps even my month SO.
Well, don't say that it's only the first week.
That's true. That's true.
Well, for the listeners at home who maybe connected with your
story and maybe want to like chat with you more, where can
(51:11):
they do that? Yeah, so I am like infrequently
active these days on TikTok. I kind of have a platform ish
Cat G Sally is my handle. If you GM me on there, I may not
respond because I'm trying to limit how much I'm actually on
that app. My G, my Gmail, my e-mail, it is
(51:31):
Gmail, but you know, catsaladin@gmail.com is my
contact for e-mail. If you do that, that is probably
the better way to actually get ahold of me for things so.
OK cool. Can I ask, do you have, would
you want people to go follow youon Instagram?
Actually, yeah, yeah, I don't. Yeah.
(51:52):
Also another social media app. That might not be the quickest
way, but yeah. OK, so you are on social media,
you have Tiktok and Instagram, but you said that communicating
with you might be better via e-mail.
So yes, yeah, OK, OK. I like that very respectfully.
Old school, yeah. I want to regulate myself.
(52:15):
Social media isn't really helping very well so.
No. And that is smart, yeah.
I, I'm trying to go back to likereading the newspaper where I
have to like, I get my news. It's not actually the newspaper.
Obviously I'm going to like try to have a time.
This is all hypothetical. It's part of my plan, but the
time frame a couple times a weekwhere that is my news time where
(52:38):
I'm engaging in like, OK, what what's going on now about the
descent into fascism and generalfreak out time?
OK, outside of that, let's not be scrolling because girl,
that's not regulating my nervoussystem.
So that is trying to be old school trying trying to be old.
School. No, I I do like that.
(53:00):
I like having your designated news time.
I might have to steal that. Yeah, it's we'll see.
We'll see how how well it works.Yeah, well.
OK, might be fried, but it's OK,we're figuring it out.
Life is hard, we're all trying our best.
Exactly, Yeah. Well, Cat, it was amazing to
(53:21):
have you on the podcast listeners.
If you liked hearing cat chat about everything, which rhymes
and I love that. Go follow them on social media.
Send them an e-mail if you want to get in touch.
But otherwise, I'm Clark, this is Kat, and this has been
chronically the sickest podcast you know.
(53:48):
That's all folks. Thank you so much for listening.
If you liked this episode, clickthat follow up button on your
podcast app of choice to get notified every other week.
You can find the podcast on Instagram and TikTok at
Chronically the Sickest Podcast.Let me know if you have any
questions or just want to chat. I love hearing from y'all.
Until next time, I'm Clark, and this has been Chronically the
(54:10):
Sickest podcast you know. Disclaimer, this is a
conversational podcast and whilewe may share a diagnosis
journey, symptoms, and treatmentplan, this is not medical
advice. If you have any questions
regarding your health, please reach out to your doctor and
have a great day.
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