Well, welcome back to the show. This summer has been brutal with
heat and humidity and both Becca and I have pot Postural
Orthostatic Tachycardia Syndrome and we have both been really
feeling it lately and we figured probably a lot of you have too.
So today we're talking about what really matters with Pot
Slayers hit, how Becca and I noticed them.
How do we care for ourselves and how do we shift shift beliefs
around product to being arrested?
Because when the flare up hits, there's a whole lot of crap that
comes in. So stick around and join us for
this conversation, Becca. Wow, right?
Wow. I mean, it's been a week, a
week, two weeks. I don't know how long, many.
It feels like forever right? But here in the state we are in
summertime and it is the end of the summertime which is always
the hottest part of the summers. And why pop scenario with the
heat is terrible? I have not.
There is no good coming out of hot temperatures for me.
Between having pop, being in pre menopause plan, being on mental
health medications that make me sensitive to temperature, summer
is like a no blow for me. And it's actually one of the
reasons that I moved so far up north where I live was to get
away from that. So this past week has been a
challenge. We had a huge heat wave here in
Maine for like I think 3 days in a row.
It was and it just took me off in the feet.
I don't know if you felt the flu, but I was like at 50%.
Oh. My gosh, yes.
So I am in, of course, like the the pit of heat and humidity in
central Alabama. Gee, thanks, honey.
I'm so going to move back. You know, we, we moved to
Colorado and we're there for a couple years.
And I thought, Oh my gosh, this is going to be great for my
pots. And it was in a lot of ways
because it was less humidity. But I have to say the heat was
still just as bad for me in the summer with pots and everything
in Colorado as it has been here in central Alabama.
But the the heat this summer, it's been brutal.
And I've I felt a few things creep in because, you know, for
those that follow the show here for a little bit, you know, I
was diagnosed with long COVID in January of this year and I
didn't get COVID until the January prior.
It was the first time I got it in all that time.
I was really lucky but that actually set.
Off a. Ton of POTS related symptoms and
issues for me that I hadn't had in almost a decade.
So this summer has been really hard.
Nearly hard. And it is.
And what's crazy, I think for me too, is that I, there's part of
my brain, I guess it's the same part that for women when they
have babies, forgets how painful birth was.
There's a part of my brain that for cat how much it stinks and
how bad a flare is. And you know, I'll push myself
if it the longer it's been since the flare, the harder I will
push myself because that's somehow weird way I forget like
all of those things. And I should know, we talk about
seasonal living, you and I, and here I should know, here comes
summertime. I should start like laying my
load. You know, I have to start to
lessen my load a little bit because I never know when the
heat's going to come. I have no control over that
piece of it. I only have control of how I
respond to, but being overloaded in my work right and and really
spread thin makes it worse. It makes me more susceptible to
some kind of flair. I think it happens for me too.
And you know, I started almost a year ago now.
So for those of y'all that that have been part of the hormone
harmony series and and I was teaching about there's different
phases of your cycle and how it shows up for their Co occurring
health conditions. I honestly really leaned into
that this year. And since January I have blocked
off an entire week and I call it my rest and reset week.
And it's when I have my cycle and we're actually recording.
That's stupid enough and all the Berry menopause stuff, but it,
it was really interesting for me because, you know, before we got
on and hit record, I was like, Oh my gosh, my teeth have really
been hurting. Like I was really in a lot of
pain last night. And it's something that I've
noticed when I'm having a POTS flare, like the things that
normally I, it's like I may not notice or it's not that big a
deal, intensify like it becomes so much worse.
So normally I've been noticing like my week before my period,
during my ludial phase, and then the week of my menstrual cycle,
my teeth will get really sensitive, like the nerve
endings. And so I noticed that and, and
then I, I was panicking when it first happened because I
thought, Oh my gosh, if I go to the dentist and I got all kinds
of dental traumas there, that's kind of a big thing that was
super scary. But I, I started tracking like,
oh wow, no, this happened about the same time last month because
I feel in that little trekker thing and I just write random
stuff down because you and I both have said slicks, random
things will show up. And yesterday, of course, I
started three days early and it wasn't just like, OK, we're
going to give you the little signal.
And then all of a sudden, you know, you got a little prep days
before everything really starts. I didn't get that.
I got, I got a signal yesterday morning and then it all started
yesterday afternoon and last night.
I my ear was hurting, my top of my jaw on the right side of all
of my teeth up there hurt. And it's stuff like this is like
starting to recognize these signs, but it's worse this time
because I started having some POTS flare up.
But now that I did, you're already inflamed and flared up
from and then this gets layered on top of it, right?
It is unreal. It is really like I feel crazy a
lot of the time when all of this happened because they're it's
like that, like have you turned and then be like my teeth hurt
and I know what it hurts like when you have to go to the
dentist. This isn't the same kind of
teeth hurt, but my teeth hurt right?
Like and I get all right, if my ears get itchy or my feet eat
the itchy feet, I don't understand.
I forget it and there's no amounts of moisturizer that
would stop the itch on my feet. I don't understand it.
And it's really like we'll do your little signals, your little
warning that stuff is happening, though my itchy feet is always
my little signal that I am in like coming toward my period
somewhere. Something is happening that my
hormones that my feet are great and then it'll pass.
But I really have to say the layering on of the Perry
menopause symptoms with the pop is it's almost like, I don't
know, I don't even know how to just spray.
It's like someone else takes your bodden from you for a
little bit. That's how I feel like you're
just onto the ride and that's. Feel like somebody turns the
dial up on everything that. Like everything, and I don't
mean to be angry and mean at people and things like, but I
you just feel trapped in your own skin.
OK, we're we're going to talk about that for a SEC last week.
I am telling you, I it had probably been since my late 30s
that I had like this out of nowhere Superintendent rage
experience. And it hit me last week and
y'all, it was so bad. I was walking down my driveway
cussing and screaming like a crazy person.
Now I live out in the country and have a quarter mile long
driveway, so it was kind of a good thing.
But I'm walking down an opera and I blail in my hands and I am
just, I was, I don't like the Tasmanian devil.
And I'm just like that. All this stuff just coming out
because I had to get it out right And he knew I knew
something was not right. And perimenopause, this has just
been one of those things. And with all the stuff that's
happening, like I started to notice.
Like for me, it's immediately when I start to get really bad,
like Vertigo and dizzy. That's like comes on 1st for me
usually. And I'll get like a sort of racy
heart and I'll feel a little short of breath.
Like those are some of the ways that I notice it and I'll get
like a little dull headache. You know, some of those little
things are the signals that, you know, some pot stuff's coming up
for me and that's been creeping in.
And then, of course, being in my luteal phase last week,
everything intensified and that's the first time.
And y'all, I'm 51. So, I mean, it's been a minute
since I have had this kind of intense, but I knew it was a
chemical thing. And that's the worst.
Part you can. Feel that it's a chemical you're
like I am. This is not like who is this
you're unrecognizable to sell. Sometimes I like the.
Dragon Lady. Yeah, like, and I know people
joke about it all the time. They see memes about it online
and everything. But like, you know how we get to
a phase where we're like, we anybody eating here, right?
Like the sound of their chewing and you're like, could I?
I will whip your face right now. My own chewing my own.
I mean, I annoy. Do it to ourselves.
I annoy myself and I think that, you know, a lot of this stuff is
happening for me together, but it's almost for me.
And I don't know if you feel the same way, but I you know, I
could deal with my pop and I was dealing with my nuisance of
periods and they were separate thing for me.
Most of my so my pots is acting up.
Let me do XYZ. This is about my period.
Let me do XYZ. But now I'm in this New Year's
very menopause thing that nobody understands and they are
connected together now. And so sometimes what I use are
my pots doesn't work for my period right.
And all back in this is a game that needs to find itself to
men. I'd I don't like this but how
dangled they are? I feel like I'm played whack A
mole for tuts. OK, so for me, one of the things
that I do to help, like recognizing the signals and sort
of at least allowing a little space when I know, like for me,
the week of my period, this is 1 where I do like my rest and
reset. Like I don't book any big stuff
this week. And sometimes I do have a flight
things event and it happens, but traditionally I'm like pretty
rigid around that time because I know there's so much going on
right now. I don't know how I'm going to
feel. It's less predictable sometimes.
So I block that off. But then I also use my hormone
harmony tracker and I just kind of track even the most random,
like obscure stuff that I'm something comes up, I just write
it down. And I've noticed like over a
couple months, I can track stuff with something that you do to
kind of help recognize your your pot symptoms and signal.
Literally for me is one of the hardest things that I struggle
with the most because I'm somebody I really, really
struggle with identifying my body signal.
And So what I actually do for my health is take care of myself in
a very moderated way all the time.
So like I don't ever let down my guard around my pots.
I have things that I do all, you know, everyday, all the, you
know, in an effort to keep it controlled because I don't
always catch the signal. So I'm not somebody who can be
kind of reactive to my symptoms. I have to do symptom management
ahead, if that makes sense. So I take a lot of supplements
at night. I take, I take magnesium, I take
vitamin DI take right. So I take a lot of supplements
to support when I know what is going on.
I do have electrolyte drinks. Those are out there and things
like that. And so I drink them, I make sure
I drink two of them away, one of them first thing in the morning,
right? Other thing that I can kind of
that I've noticed for me is I'm very weather sensitive.
So I can more than anything else, if I look at the weather
and I have an idea of what's coming and what days are, you
know, I kind of could say, oh, well, that day I'm not going to
be able to do too much. I can already see that I'm going
to be impacted in that way. And so I try to not set myself
up for failure by ignoring those things.
A lot of what I do is prep and then of course I then I'm like
the emergency. Then the other side of prep is
to be the emergency preparedness scent.
So I catch them with me around it, right?
I carry make sure I always have electrolyte little packets with
me or I make sure that I'm thinking about salt and do I
have it with me and just making sure I have the emergency things
if I'm wasn't able to prepare for some.
Oh yeah, I keep one of the little electrolyte thing tab,
you know, water packet things in my purse.
But you know, I'm like you, I use a lot of different
supplements and stuff. What I have found, and this has
been really good, I use something called magic mineral
salt. We'll sit magnesium mineral
salt. I will send you the link for
the. Write it down.
Look at us. We're here giving each other
advice to. I will.
We'll see. There's a link to all the stuff
that I use 'cause I shared this in our Hormone Harmony and I'll
also share that download for everybody that's like your
Hormone Harmony with your COVID curing health condition that
cover endometriosis, Pecos, all kinds of stuff, POTS, the whole
thing. I'm going to share that 'cause I
think this is something that's really important.
But I mean, this stuff has been great.
And I just add a little dash of this into my very first cup of
my everyday dose mushroom coffee 'cause I got off caffeine last
year. Oddly.
I was such a coffee addict, but and then and so I just do that.
I kind of kind of like you, just the how do I prepare?
How do I do preventative things, you know?
Yeah. And then have that emergency kit
First off. But I love your check in the
weather because you know the barometric pressure.
I do, and this is one of the things that I was invalidated
about, by the way, my entire life was my sensitivity to the
barometric pressure. What do you mean?
You know it's gonna rain? Do you know how many people I
could have spared by telling them to get an umbrella in my
life? Like any beautiful.
But I have to know because it also impacts my migraine.
It'll impact my brain fog, right?
Lots of different things, but mostly it limits my, you know
what I'm capable of on those days.
And in the summertime, those winters are tiny, you know.
What's some ways that you know you decide what gets your spoons
on Flare? Days, OK, so on flare days to me
is like selfish day, right? That's my number 1.
So I, I am somebody who gives, gives, I love, I love to give my
energy to people. I love to give my time to
people. I love to collaborate with
people. I love to support other people's
work, right? But when I go into a flare,
those are the days when I call to all of those people and say,
I have always been here for you, but I cannot make our meeting or
I need to reschedule our this or whatever because I need to do
take that time. And any energy I do have really
has to go to my priorities, which for me or myself and my
family, right? And so that means I have to make
sure that my dogs get that. And I have to make sure that I
get that, that I take care of my hygiene, that my husband has
what he needs, that we're, we're all safe and have what we need,
right? Because in that time, I don't
have all of my everything available to me.
And then if I have anything leftover, I could think about
giving it to other people. But usually on flair days, what
I try to do is not right. I try to, you know, this my body
saying stop. That's why I treat it.
You know it's my body signals because I don't listen to slow
down very well, right? That's a really, I love that.
It's interesting. I, I was really thinking about
this as I've had a couple taste lately and, and it's, it's been
one of those things where I'm like, you know, I actually
didn't even think twice about it.
Like I, I was on reflection that I, I noticed, Oh wow, I had a
bunch of stuff the other day on my calendar and I was really
just not doing well. It was hard to stand up.
It was just, I wasn't feeling well and my brain was just not
doing the thing. And I went, what do I need?
That's the big question I always ask myself, what do I need and
have an Alexa Thyme in and really for me, I do know, you
know, and I just need to listen for a second like you just need
to get your butt in bed. You need to have like nothing
watch some fun TV. And just.
Stay in the house and be cool. Don't mean go outside.
I was like, OK, and I just immediately sent out a couple of
messages and I said, I'm not feeling great today.
I would not be the best person to show up for what we're doing.
I would like to reschedule. Here's the link.
Let's do that. And do you know, in the minute I
in the moment, I not question myself, I didn't go, oh God,
they probably need blah, blah, blah.
I didn't think about any of that.
I was just like, what do I need? OK, this is what I need to do.
And then I reflected back on that.
I'm like, holy cow. Like that felt so empowering and
so freeing because I didn't question, I didn't shame, I
didn't blame, I didn't try and force myself to do stuff.
And I was like, how much better than I feel the next day.
I was like, I felt like a new person.
Well, that's and that's the thing.
I want us all. I hope that everybody who's
listening gets this right Because sure, we're talking
about POTS. We've also talked about prior
menopause and periods, but this could be about anything.
When you get to that place of overwhelm where your brain is
like, I'm tired and I can't, you deserve that break.
You deserve to give that to yourself because that's what you
need. If you needed to go pee, you
wouldn't tell yourself, no, I have to do this.
I'm not going to go pee, right? So it's like it's understanding
that those that's part of your body's communication to you is
when, right. And what happens when we don't
pay attention is we do really crappy work.
That's what I want to tell you when you show up places and you
are not your full self. You're a crappy friend, you're a
crappy spouse, you're a crappy parent, you're a crappy
everything. So you're not even, you showed
up, but you're not even there and doing what you want, the
person, you're not the person you want to be when you're
there, right? And so we have to remember that
we're doing everybody else a favor too by taking that time
for ourselves because whoever you rescheduled with would
rather be with you when you're feeling well, then, you know,
with you when you can barely, you know, keep your eyes open or
stay awake or any of those things.
And so we, I don't know where that trap comes from when it
works for everybody, but we all feel like, oh, I shouldn't
reschedule. I should push myself through,
right? I think what are the tips that
really helped me because sometimes I was like, I'm not
really sure what I need. So what I would do because I'm
like you like my love language is giving and I, I gift a lot
of, you know, time, resources, all that kind of stuff.
That's my love language. I'm the same.
And so I kind of used that and instead I flipped it when I
sometimes if I'm like, I don't know what the hell I need.
I don't know. I'm just like, if my really good
friend Becca came to me and said this is how she was feeling,
what would I tell her? What would I want her to have?
You know, that kind of thing. And when I flipped it, then I
was immediately like, oh, this, this and this.
Right. And because they come that, I
don't know, we touch on that space of all the shame that
come, right? That comes up for us as we are
processing what's happening to us.
Because the whole world is we've been fooled into believing,
right? This myth about productivity
that if somehow we are not currently producing some kind of
materials, we are, you know, just occupying space, for
instance, that someone else could be occupying, right?
And the minute chronic illness raises its ugly head into your
life, you have to reframe how you think about rest and what
you beliefs are around rest, right?
And whose, whose voice is in your head, right?
Like whose repetitive stuff is in there.
Because this, we've talked about it before, that fear of being
caught resting like that, because that comes up for this
all the time. And yet if we don't rest, we
don't get better. So you have no choice.
And if you're truly chronically I'll, if you don't rest, your
illness will make sure that you rest one way or another.
And so it's about can I choose one to rest or do I let my
chronic illness juice when I rest?
It it's you know your health is your wealth, right?
And I didn't even plan this, but y'all I've got on the perfect
T-shirt for today. My T-shirt says hustle at the
top and has a line through it and underneath it real big.
It has a line. Yeah, that is it.
And I think that's one of the things, and this is where I
really struggled because I've had that productivity and
performance equated to my love ability and my worthiness, my
value, right? And when I, it was complete,
like all of my chronic conditions, it was like the
perfect storm and my entire body shut down and I was bedridden
and I couldn't even lift my hands.
I had two little kids at home and, you know, my husband was
overseas. And this was just like the
absolute worst. And there was this part of me,
and I remember it was about two full years, honestly, of just
this horrible internal viciousness beeping myself up
every day because my body, I felt like my body had betrayed.
Yeah. Who had quit?
It was revolting against me. And when I flipped that
perspective, thanks to some really beautiful people in my
life who said, feel like there might be a different way to look
at this. This isn't your body betraying
you. Perhaps.
What if this is your body telling you what you need, but
you just don't know how to listen yet?
Yeah. And that if Abby won't, because
we're so busy listening to whatever the other voices out
there telling us what we're supposed to do, what we should
do, all of these things, right. But this is wrapped, I think,
for me to around a lot of our police around aging women, women
and aging, right? Gosh forbid that we should need
more rest because we're getting older, right?
Just for that, right? Or that we've, if you want to
put it in those terms, we've earned rest by our years on this
planet, right? However we want to talk about
it, right? But aging is a component of
this. You cannot, even if you were a
quote UN quote productive person in your 20s that looks different
in your 40s, you don't have the same capacity.
And that's those the job. I think that's the lesson in
chronic illness for me is, you know, I don't get to decide the
speed of thing. Sometimes I have to rest,
sometimes my body has to force me.
But I also spent, and I don't know if this is for you, I spent
a lot of years ignoring my meat suit and I wanted nothing to do
with it. It was so annoying to me, right
that I feel like this is my lesson.
And no, you have to pay attention to that.
You don't get tried on. Like you don't get to just wear
it like a suit carrying your brain around.
You have to take care of it. This is the lapse because I was
so jealousy. I just want to take my brain out
and put it somewhere else. Hey, that I feel very much like
I am my brain and like it's just, you know, inside this meat
suit, but I could take it and put it in another meat suit and
I still feel like me. I don't, you know what I mean?
Like my brain is genuinely who I feel that I am.
That's where I feel I exist. And this is just like the the I
don't know, the car that I'm in. This had the vehicle of for my
brain. The interesting thing, I love
that we're talking about those. So I had this very unusual dream
the other night and I woke up, you know, early in the morning
when you get in that dream state.
And I was sort of in that lucid dreaming state where I was like
conscious, but also still during new.
And this very clear image came and I didn't want to forget it
because I've been like, you know, the meat suit, the skin
bag, all that kind of stuff. It's just like, I don't know,
it's just like the brain, which was just so beautiful.
You're going to love it. It was the Earth swing.
This vessel is our earth swing. Like I even saw a globe on a
swing, like moving back and forth, and it is standing
around. You know how when you're little
and you get in the swing and you spin yourself around and you go
in every direction, you go high or low?
And I was like, yeah, actually that's pretty accurate.
So I was like, it's my earth swing.
Oh, I like this. I like, but that we, I
genuinely, I know, I don't know if you're out there and there
are typical people listening, do you feel like you're attached to
like it's all one package or do you break 'cause I don't
necessarily feel that way. I feel like my brain was placed
into this package and I'm you know, the package is optional to
me. You you like I feel like could
be that brain in a jar, you smooth beer.
So I'd be fine. I wouldn't have to deal with
pops. It would all be great.
I mean. Honestly, I think if I could do
that, I like, I'll just want to have like one of those bionic
bodies. Right.
Yeah. But like, how do we reframe
this, especially when we're in a POTS flare?
Because, you know, if it's not just a couple of days, if you're
in a flare that's lasting for a long time, you and I both had
those. There's a lot of crud that comes
up because you're you can navigate the whole belief system
and the Shane stuff and give yourself some rest for a short
time. But there's this point of time,
but we hit it and all of a sudden it's like no longer
acceptable. Yeah.
Well, that is I think for me is about understanding your new
normal, which is a terrible way to say excite the word normal.
But when you have chronic illness, when you enter
perimenopause, all of it, right, you're adjusting to a new
normal. So your standards, what you were
holding yourself to before have to change.
And if you don't change them now, you're holding yourself to
old standards that you can't possibly attain anymore.
And that's I think our grave mistake.
We have to, you know, you might have been, it's again, you might
have been one thing in your 20s, but now you're in your 40s and
you have to kind of reframe the whole thing and what your
capacity is, what you want to be doing, how much of that.
So when you're, I think in a especially when you're in an
extended flare, it's easy to land in depression.
What is my purpose? Am I even bothering, right?
I don't even waste. I used to say I'm just a waste
of oxygen. I'm just thinking up somebody
else's air, right? And things like that.
And it's easy to go into that. But again, that's attached to
that productivity thing, right? It's when you're only resting
for too long. If you feel like you should be
doing something else or be somewhere else, right?
And So what I say to people is you have to create a new
standard, a new set of normal. And if that means you nap every
day and that's your new normal, then you nap every day and that
is your new normal. And it's not about a standard,
you know? These standards and
expectations, oh man, they could be so heavy.
You know, one of the things I love, and I know that you have
this experience too, in your groups.
And it's like the genius, the wisdom that comes from our
collective conversations. And the other day in our
alignment Sundays group, we were talking about some hard stuff
and one of our members shared a phrase that they had heard
recently. And I was like, that's so good.
And she said if they could, they would like, Oh my gosh.
You know, like sometimes if somebody's hurt your feelings or
maybe they did something or you know, I was thinking about this
from a plots fleer. It's like the days that I need
to rest, you know, if I could do something, I would.
But today I I'm and that's OK. Like pushing yourself isn't,
isn't the norm. That shouldn't be acceptable
behavior, pushing yourself past your limits.
And yet we're all asked really from a young age to push
ourselves fast. I, I really, I feel like it
starts pressing school, like we don't get to school really
because we need some place to send them all their parents
work, right? I'm asking kids to sit for that
many hours, right? And and it's beyond their
capacity. So we get used.
To that way. Right.
I mean, it's and so we can't, we have to, you know, pushing
through is something we're told and taught to do so early on.
And that's I think the piece that we have to change for
ourselves, right? That's not fair.
We have limit because you're human, and that's OK.
So what's something right now that you are in the process of
unlearning around your needs or anything?
Think you know I am a natural helper person and I am not
someone who accepts help well. So like, I give help, fantastic.
I will help every, but I am not an asker of help.
Like there I still am working around the shame of needing help
and needing support. I think probably because I'm
always need support for weird things.
That was like the things I asked for support around and probably
even until the day if I told people some of the things I need
support around, they would really judge around it.
So really that's something I'm still working on and something
that I need to be humble about because when I am in a flare, I
really need help. I can't get up a million times.
I have to make sure I'm hydrating.
I have to, right? There are things that I, I have
to do in a flare to get out of the flare.
And so I do need help and support for those things.
So that's something that me and my little ego need to work on
about not asking for help for ourselves.
What about you? I am in the place of practicing
that more frequently as I've gotten to place of uncomfortable
and knowing that I can ask, I'm good with that part, but I don't
practice actually asking because I'm like, who do I ask?
So part of sort of what I'm unlearning and part of this
process for me has been who do I identify?
So I just kind of started preemptively working on a list
around this, I don't know, a couple months ago.
And it's like, well, if I need this kind of help, who would be
the person I would want to ask? And so that way when I do need
it, I've already got something to go back to.
But for me, it's kind of like, OK, pause for a minute.
What do you need? What?
Who's person that you can ask for this and then actually go
ask them? Not just a theory, I'm saying.
Right, this is a great person, but I you can't get frozen and
they ask right, You have to make sure we and there is around that
whole piece, right? We have we have work to do all
of us, because I think many people are willing to get help,
but so few people are willing to ask.
We have trained ourselves to believe it's a weakness to need
assistant, right? And that we shouldn't and
layered, we shouldn't show our weakness to anybody.
So we shouldn't ask for help. Someone shouldn't know.
And I think that's a huge mistake.
I think that's a terrible habit to me and I am desperately
working. I'm asking.
OK, So collectively as a community here together and
things that really matter, Becca and I are not going to be the
chief standing alone here. We hope will.
Not. Let's do this together.
Let's find a way that we can, can support one another in this.
And for me, I think sometimes, Oh my gosh, when we talk about
how do we advocate for ourselves, you know, how do we
have connection with, with other people, especially when it comes
to like when we're in a flare. So Becca, how do you explain
POTS to other people who don't have it or aren't familiar with
it when you're in a flare and you need some help and they're
like, what the heck do you need to do that for?
You did it 2 days ago, right? I have noticed that if I truly
am in a flare and I actually need something, that I do my
darndest not to explain a damn thing.
That is actually because when I am in a flare, I need something
and it is not my responsibility to educate you in that moment,
right? So.
Oh, happily educate you around POTS.
I will share resources, right? But when I'm in a flare, that is
not my time to educate. That's when I have to take care
of self. But at the same time, I also
need community more than anything else.
So when I'm in a flare, there is nothing that I love more than
going into my POTS haste book book group and reading everybody
silly memes about all the things you deal with when you're
chronically I'll because it takes away that isolation.
Here you are stuck in bed, all of these things, but then you
see there's other people stuck in bed.
They're stuck in bed far away from you, but they are also
having these thoughts or these conversations or these thinking.
And that always makes me laugh and it always makes me remember
I'm not alone in it. And then I'm not crazy.
Other people are having these symptoms and all of those
things. And a lot of the time the
solutions for many of my problems, mind, my mind
community, when I see other people posting, right, You'll
see, oh, someone found this in a couple of you know, this thing
and or this way to calculator, this way to track.
And then you can find options for yourself and you know that
there's somebody else out there is thinking about it as much as
you are at the close at 7:00. So I to me, that's the key for
me is I'm reminding myself that I'm not alone because when I
start to feel alone and I bleed it, I go into that depression
mode where why am I here? Why am I doing all the things
I'm doing? Yeah, absolutely.
It's, it's one of the reasons that I, I'm such a huge advocate
and champion of the invisible disabilities organization.
And I have joined their campaign for the last two years.
And it's, it's important because I think we can't do these things
sometimes when we're in a flare, we just don't have the energy
and that's not where our capacity needs to go.
And there's plenty of other times, you know, like when you
are feeling well, those are great times to advocate in a way
that works for you. You know, like my, my friend Rex
scanner. I, I love them so much.
They were like, there are times I just don't feel safe.
There's times I just don't have the energy, the brain width, the
capacity. But I can wear a T-shirt.
Yep, you know, I just something that simple or just, you know, a
general like just image post and leave it at that.
And you got to remember, we were always because so few people
really know about like POTS and M casts and LR Stanlow's
hypermobility, all of the Co occurring conditions that show
up in our lives. People just on average aren't
very well educated in our human bodies to begin with.
You know, we don't get about these things in school.
And because we are struggling with them, we become the experts
on this. I mean, we honestly, we did the
deep dives, we do the research, all this stuff.
And we're always going to know. I mean, I see this in our POTS
groups all the time they were in, it's like, Oh my gosh, I had
to educate my doctor. How many times did we go?
And we are educating our medical professionals on how to treat us
right? And it's just, it's exhausting.
And so really that's something I love that you shared that back
out. We have to really think about.
It's not my job to educate you, but it is my job to let you know
what the boundaries are and what I need in 1X.
Right. Like, that's, I think there's a
time and place, but it happened to me also when I got my autism
diagnosis right. There was a sudden expectation
that then I was an expert in autism and I had all the answers
around everything for all right, just because I had it.
And it's not my job as an autistic person to educate.
Have I now chosen it as my job? Yeah.
But it is not my inherent obligation as an autistic person
to educate. And so I am fascinated by the
amount of people who ask questions to an autistic person
when they're in meltdown. The the most understanding, the
least, whatever. And that's how I feel when I'm
in a flare and someone asked, what do I mean by Bob, 'cause I
don't feel good and I don't have the patience.
And I'm like, thus trying to take care of myself.
And so I do remind myself, I don't have to.
I just have to tell you what I need.
And if you're not able to help me with what I need, then I need
to move on 'cause I have to take care of myself right now.
You know, and there's a time and a place when, if I'm feeling
well, I would gladly speak an hour and a half on POTS and what
it is. And that would impacts me and
all of those things. And so we need to remember that
we're allowed to put that boundary up.
You know, just 'cause I have the information doesn't mean you
deserve to get it right now. I mean, right, 'cause Google it,
right? Exactly.
Yeah. I mean, and I think that one of
the things that makes a big difference, you know, like you
said, we do tend to isolate when we're not feeling well because
it takes energy, it takes that capacity to be with other
people. And so that's exhausting.
And sometimes it's even my sensory system and all this
stuff happening during a flare up is just like, no, I, I can't
be around other people. Just too hot.
No, But if I'm in my ludial phase, it's for your safety and
I'm not. It's really, you know, you know
yourself. And so we have to call those
limits, you know, and it's when you have POTS.
Like if I had to go somewhere where I had to wear specific
clothes when I'm in a POTS flare, why not?
No, no, because no, I need like I need be.
I need to not be in anything. That's weird feeling.
No, nothing too tight, right? It's a situation.
Oh my gosh. And and just like the days where
the. The blood and everything isn't
pooling in my legs and my extremities and I can't quite
you and I have to wrestle myself into those Dang Ted hose.
Joel, I live in central Alabama in the another circle of heat L
and humidity and I am wrestling myself, my little fluffy body
into these Dang Ted hose. And it is just like, Oh my gosh.
I actually saw in our pots Facebook, one of the pots
Facebook groups, somebody had somebody's from about two
different designs for something. You put the Ted hose on and then
slide it up so you're not like wrestling and choking yourself
to death. Because I feel like I'm
suffocating when I put those things on because I have like
constriction stuff. It it's almost like, OK, maybe
maybe I'll try that, you know? And there's just things you can
get in community that you can't get anywhere else.
And I think it's also one of the places where when I felt really
invalidated, especially by medical appointments and things
like, I, I needed community. I needed to know other people
saw me, Like, I wasn't experiencing like, like this
crazy thing. And somebody looks at me, you
know, like at the doctor's office, like a third eye or
something. Yeah, when not, there is nothing
that feels better than saying you have a weird symptom like
your teeth hurt, typing it into your Facebook group and having
everybody Oh yes, yes, right, 'cause you're like, please, you
understand, right. Like thank goodness, and that
piece is not something that anything you can get anywhere
than community. All of those people have stepped
in the shoes, you know, and so that's why it feels good.
It feels like somebody caught you, right.
It feels like you get caught by by everything.
And so that to me is for me one of the things that I rely on the
most when I'm having really hardcore mental health days
around either my players or my autism, which yes, I still have
them around my the look check in.
I know Facebook is like an old person thing now, but we have
some really old long standing group on there from, you know,
in our community. And when I'm having a bad day, I
go there because I know someone else was in a pill, know I'm
feeling that day, and I can be like, yeah, me too, you know?
And I think just to kind of bring this conversation that I,
I hope has been of great service to you for listening.
If you have been experiencing some POTS flares this summer, if
you have add any of the stuff I cannot shared and maybe some
different things we want to know about those two.
But we also want to talk about like, what is success look like
in a flare because we can really kind of get caught on all the
stuff that's not going well. But how do we start to be gentle
with ourselves to go, you know what, that was a micro win.
Or I just gave myself permission to rest and that was a huge
success. Right.
I mean, we have to package those things up and look at them
properly, right? A flare is a flare.
It's going to do its thing and it's going to roll through a
cycle and then at some point it will end.
Are there things we can do to support the ending of that?
Yes, right, they're stupid. You can remember to hydrate, you
can remember to put your feet up right.
You can remember to lay down when it's possible.
Don't do too much exertion, right?
We can do all of those things, but it to me it's the pausing
and awareness. Yes, I am in flair.
We are acknowledging I am in flair, right?
That to me is a package to win. Every time I say to myself, I'm
not crazy, I don't feel good, I am in a flare and I acknowledge
it and then say, do I need to hydrate?
Do I need electrolytes? Should I have a pickle?
Do I? What could I do for myself?
That's a win to me, 'cause I've acknowledged its existence,
right? Which means it's not this all
powerful thing hanging above me anymore.
You're real, you're happening. And just like if I had a
headache, I would. What could I do to make it
better? And that, to me, is a win,
right? If I can get through a flare
without a just without being depressed at all, I consider
that an even bigger one. Oh my gosh, yes.
One of the things for me that has been such a huge way to
reframe and to really begin to look at and and really feel
successful even in a flare. It's been just simply
acknowledge that the reason that I have a particular symptom or
condition is it because I'm being punished, isn't because
I'm a bad person, isn't because I did something wrong.
It's just part of my journey and it's the way the symptoms flare
up or just sometimes how my body is responding to an
environmental thing. It can something that's totally
out of my control. It isn't because I didn't do
something or I did something wrong, because I would be pretty
hard on myself thinking I could have prevented this.
I could have had more water, I could have done this, this, you
know, somehow. And that can be really hard.
Yes, like I could, should have, could have or should have done
more or something, but it's not we we shouldn't ratchet like
punishment. You're right.
It it's very easy for us to take it as like a personal
punishment. But no, I think there's lessons
in it for us. I think those of us who were
gifted our chronic illness, right, we were given it for a
reason. There's something in it for us.
There's a lesson to learn. And it might just be that we're
the people that have to show the world that we're all going too
fast and that we need to slow down.
Definitely. You know, you and I have
something pretty special coming up to help everybody
intentionally take that choice to slow down, to really tap into
yourself. And Becca and I are really
excited. We are putting together a
three-part workshop series, The Journey of Self Renewal, and our
first workshops could be coming up at the end of September and
it's going to be the fresh start.
Rewrite the story of you, Becca. Tell me.
I mean, you and I were planning this and talking about the end
of the. Year, we are going to tackle the
evil monster of negative self talk.
That is what we are going to do. We are going to tackle that
monster. Talk about how we reprogram that
and how we take control of that situation so that the things in
our life that we're doing are choices, not stuff that we feel
pushed to or are habitually doing, which is even worse.
Well, it totally is. I'm so excited about this.
We're going to make sure that y'all have all the information
that you need coming up in the next couple of weeks.
We'll have that ad on both of our social media channels and
we'll send it out to our e-mail list.
If you're not yet following the show, hit the follow button.
Make sure you do the notifications so you don't miss
anything that we have coming up because Beckon are really
excited about this three-part workshop series to help you
rewrite the story of you to obliterate that mean negative
little voice that's just beaten you up inside that really has no
business being there. Get out.
We're going to teach you how to do it.
We are, we're going to do it. Take care of y'all, have a
fabulous month and we'll see you next month here on things that
really matter. Bye bye.
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