August 3, 2023 • 19 mins
PLEASE READ!
Please note that The Post Concussion Podcast has been closed for new episodes as of early 2024. Concussion Connect is also closed.
Thank you to everyone who was so supportive over the years and I hope these episodes continue to help others as they come across them!
I have set on a new venture (with a pen name - Izzy Barry) you can learn more about here
https://izzybarry.substack.com/
--
It starts as one concussion and maybe that's all it takes but for myself (Bella) it took quite a few. Then the symptoms you may know all too well came about such as chronic headaches, crippling fatigue, depression, and more. This part was the longest, or so I thought would be the longest until I recovered.
But what if I didn't.
I am now in the longest part of my illness journey that I know of because this time I know it's forever. There is no recovery to make, yet I have "recovered" from post-concussion syndrome. I don't have PCS anymore because I am one of the few cases (maybe more than we know) that became chronic.
Chronic illness is a tough challenge to overcome as it's the forever type. Listen in as I share a glimpse into how these diagnoses came to be and some comfort if you may be one of the few whose recovery is not exactly a recovery after all.
For show notes, transcript, & to book a session with Bella: https://postconcussioninc.com/podcast
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Bella Paige (00:03):
Hi everyone.
I'm your host, Bella Paige, andafter suffering from post
concussion syndrome for years,it was time to do something
about it.
So welcome to the postconcussion podcast, where we dig
deep into life when it doesn'tgo back to normal.
Be sure to share the podcastand join our support network,
Concussion Connect.
Let's make this invisibleinjury become visible.
(00:25):
The post concussion podcast isstrictly an information podcast
about concussions and postconcussion syndrome.
It does not provide norsubstitute for professional
medical advice, diagnosis ortreatment.
Always seek the advice of yourphysician or another qualified
(00:46):
health provider with anyquestions you may have regarding
a medical condition.
Never disregard professionalmedical advice or delay in
seeking it because of somethingyou have heard on this podcast.
The opinions expressed in thispodcast are simply intended to
spark discussion aboutconcussions and post concussion
syndrome.
(01:06):
Do you feel constantlyoverwhelmed by your concussion
symptoms and life changes?
This is where Wombat.
Wombat can help you A newbreathwork and somatic therapy
app powered by neuroscience.
Let's slow down those racingthoughts and give ourselves the
ability to breathe.
Wombat is designed with anunderstanding of the impact of
(01:27):
trauma on individuals, ensuringa safe and supportive
environment for users dealingwith stress, anxiety or post
traumatic experiences.
Go to their website today athellowombatcom.
Welcome to episode number 111 or111 on The Post-C oncussion
Podcast with myself, just BellaPaige, today and I haven't done
(01:51):
a solo episode in a little whileand I usually do these when
things cross my mind and thisepisode is on when things turn
chronic.
I really wanted to talk aboutthis even just for a short
minute today and get it outthere, because it's something
(02:13):
that's really missed in theconcussion world and oh, don't
get me started on how much allof this, this entire podcast of
over 100 episodes, has beenmissed in a lot of the
concussion world.
But we talk about recovery alot and I don't want this
episode to be something thattakes away your hope.
(02:33):
I don't want it to be somethingthat stops you from your
therapy.
I don't want it to be somethingthat kind of crushes you in a
way.
But the reality of this episodeis that we talk about recovery
a lot.
We talk about hope.
(02:54):
We have specialists on heretalking about what's helped and
what they do for their patients,and we talk about survivors and
what they've tried and whatworks and what doesn't work for
them and you know what.
All these things are reallyimportant and it's really
important to try so many things.
(03:14):
The biggest thing about this isyou will never stop finding new
things to try.
I know it might feel like that.
I definitely felt like that,even had doctors that told me
that there was nothing left, butthere is always something, and
that is actually something I doI can help you with.
If you ever have a hard timefinding specialists in your area
and all that, we do haveone-on-one coaching on our
(03:36):
website.
You can sign up Super simple.
I hope you have a time thatworks for you and I will help
you find those people for you.
I will help you find the nextrecovery step for you, because
when you're navigating it byyourself or with people that
have nipped, been through it,it's really tough.
So if you take it from myperspective as someone who's
(03:57):
done this for a very long time,has tried most of these
therapies herself, has talked tothe experts I can really help
you get to the right medicalprofessionals.
So you know, go to the website.
If you go under more, you canfind one among coaching with me
and I can definitely help youwith that.
Now, if we go back to thechronic part, if we talk about
(04:17):
recovery and how you can recoverand lots of people, I do
believe, recover and I believerecovery is something that
everybody deals with in adifferent way.
I've had guess recover to thepoint where they don't have any
symptoms and I've had guessrecover to the point where they
are recovered but they're stilldealing with symptoms.
(04:38):
And so something I want to talkabout, because if you've been
on Concussion Connect, then youknow I was at Mayo and you know
I've been there quite a fewtimes since then and I've spent
a lot of time with a lot ofspecialists and what can happen
after a concussion.
And you know don't quote mebecause the research on this is
something that is very new, it'sreally developing.
(05:00):
You know you hear about CTE andCTE is real.
Cte is terrifying, if you askme.
You know what.
It is scary and that's okaythat we're scared of things.
But there's also another paththat can happen after a
concussion and the stress of aconcussion and I know we don't
think it's just stress, butstress on your body is something
(05:22):
that can cause illnesses andthere is a lot of research
articles that back me up on thatone.
So the other path is chronicillness, and chronic illnesses
are things that don't go away.
People don't understand whatchronically means.
So chronic illness is somethingthat you know.
(05:45):
Post concussion syndrome orpersistent concussion symptoms
has an end date.
It's usually just an unknownend date.
Where chronic illnesses thatend date is gone.
There is no end date, there isno therapies, because this is it
, this is what you're dealingwith, and then there's just the
ways on managing that.
(06:06):
A lot of time that's an aerobicexercise lifestyle, all these
things.
I am working on building acourse that kind of goes with a
lot of these things, because itnot only helps post concussion
syndrome survivors and braininjury survivors, it also helps
the people that hit the nextpart, which is the chronic
illness part, and I don't knowwhat percentage of people this
(06:29):
is.
It could be 1%, it could behigher, it could be 10%.
I don't know.
I don't have the answer forthat, but I do know it's enough
people that have noticed thatit's not just me.
I have been diagnosed with fourchronic illnesses and they are a
result of my concussions and mystress, as we like to call it
(06:54):
in an easier way, of the firstfew years, and I don't like to
blame stress, but if you thinkof the state that your body
might have been in if you werelike me, where you couldn't get
out of bed, you couldn't get upand down the stairs, you could
barely breathe most days yourhead was in such severe pain.
You were very depressed.
That's a lot on your body to gothrough every day, especially
(07:16):
if it's for years.
So there is sometimes anaftermath to that and I have
these chronic illnesses.
One of the common ones a lot ofpeople hear about is POTS, and
POTS is PosteroarthestheticTachycardia Syndrome.
We do have a course onconcussion connect about this,
on kind of living with it, andit's something that can really
range from people who faint andcan barely exercise to people
(07:40):
that when they stand up they getreally dizzy.
They have a hard time in theheat.
It's not always that extreme.
It really depends on who youare, and that's another thing
about chronic illness is it goesa lot with the concussion stuff
because it's sometimes all overthe place.
The biggest reason I wanted tohave this mini episode this week
(08:00):
is Because I know there's otherpeople out there that are
really questioning if they havePCS anymore.
I know there are people who areout there questioning that they
just don't get why they stillhave symptoms, and you know what
?
I was one of those people forabout three years.
(08:20):
Cognitive FX is aresearch-driven clinic that has
successfully treated thousandsof patients who have
long-lasting symptoms fromconcussions or other
brain-related injuries.
Cognitive FX has an innovativeapproach to recovery that uses
an advanced fMRI scan to map thefunction in your brain.
Treatment at Cognitive FX takesfive days to complete and uses
(08:42):
your fMRI scan as a guide andbaseline to ensure that your
treatment is personalized andeffective.
This means that you won't needto schedule and keep track of
multiple specialists, locations,dates, times or therapies,
because it will all be preparedfor you when you arrive.
Once you've completed theirtreatment, you receive a
personalized at-home plan tocontinue your recovery and gain
(09:03):
access to their online patientportal that has instructional
videos and resources for yourcontinued recovery.
Conveniently, cognitive FX alsooffers free consultations, so
both you and the doctors canensure that treatment is a good
choice for you and your injury.
Visit their website atCognitiveFXUSAcom.
Don't delay your recovery anylonger.
(09:25):
Find solutions at Cognitive FXtoday.
Welcome back to thePost-Concussion Podcast with
myself, bella Paige.
So forever on the show I'vebeen saying I've had PCS for
over nine years and then, afterMayo, that swapped I really paid
attention to seven years.
I had it for about seven yearsand that's because that's after
(09:46):
Mayo I realized when it switched, when it wasn't really PCS
anymore and it was more thechronic illness stuff that
started to flare up.
And it's flooded up more andmore the last few years.
But now I have help, now I havedoctors, but that's because we
were able to name the illnesses,and naming chronic illnesses is
something why I really wantedto talk about this, because it
(10:08):
can change your life.
And I'm saying that because alot of the time we deal with
things every day and we justshrug them off and it's not
always normal.
And I'm going to list about 15things maybe not 15, but I'm
going to list some of thesymptoms that I had before I
went to Mayo that I thought thateverybody dealt with.
(10:31):
So not everybody dealt with.
That I thought were just likefrom the head injuries, that
they were just things that Idealt with, that there was
really nothing to do about them,and then they were just there.
Okay, first one always cold.
I was always so cold that Iwould shiver in plus 15, which
(10:53):
is or 59, 60 degrees Fahrenheit,depending on you know what part
of the world you live in.
My teeth were starting to fallapart and my dentist was working
on it and accused me of beingbulimic, which I am not.
So that was a stressful momentin life.
My chest felt like I wasdrowning every single time I
(11:14):
exercised.
Even just going for a hike, Iwould have to lay down sometimes
or sit down because I felt likeI was being crushed.
I would get really nauseousduring certain cardio, like I
would just felt like I was goingto pass out, but I wouldn't hit
the point of passing out.
My stomach was super upset allthe time.
It would always rotate betweenbeing like rock solid and
(11:34):
bloated to okay.
It was just awful.
I had a lot of trouble witheating.
Food sometimes was stuck in mythroat.
I needed water to eat.
I could not eat like a piece oftoast, bread and apple without
drinking water to get it down.
My eyes were so dry that Icouldn't wear contacts anymore
(11:55):
and it was creating a ton ofheadaches.
They were in tons of pain allthe time.
If I wore contacts for about anhour or two I would have to
take them out.
I would have stars and halos inmy vision a lot of the time
when exercising I had a lot ofchronic fatigue, some days but
it would go away, and at othertimes night terrors would get
(12:16):
really bad.
I once went into a sauna andwhen I came out my face couldn't
get touched because my skin wasso sensitive.
I hands wet, purple, justtrying to lift bags into a truck
and the cold caused a lot ofpain in my whole body.
And you know, that's just a fewof the ones that I can even list
(12:38):
that I can think about rightnow, and you know some of those
are very obvious, but whenyou've been sick since you were
15, they don't seem that bad.
And I think that was part ofthe problem is I was throwing
all of these health symptomsinto a bucket of concussion and
sometimes you have to get rid ofthat bucket and realize that it
could be something else.
(12:58):
And my sister, who's a nurse,basically ripped me apart for
having all these symptoms andnot mentioning it to anybody
because a lot of them I wasself-managing the stomach
symptoms, I was self-managingwith different diets, eating
things, and it's not that what Iwas doing was the wrong
treatment, but sometimes there'smore that you can do.
So the swallowing, the eyes andall those types of symptoms go
(13:22):
with something called chokrins,which is an autoimmune condition
that I have got.
Once I got proper help with myeyes rather than just going to
my eye doctor about havingtrouble with my contacts, so
many of my headaches havedisappeared that I knew were
from my eyes.
So it's just sometimes theselittle things can really help,
like when I used to get out ofbed I would just look drunk.
(13:44):
As my girlfriend's wouldexplain it on a weekend is that
I look like I was drunk when Iwalked down the hall, but I
didn't realize that that's notnormal.
And I knew it wasn't normal,but I didn't realize that it was
something that I could fixbecause it was just something
that I knew.
If I got up slowly then I coulddeal with it.
But now I have a ton ofsolutions to prevent that.
(14:05):
Now I don't feel like thatanymore at all in the morning
anymore.
So it's just a reminder thatsometimes things aren't your
concussion, sometimes things area continuance of your
concussion and sometimes we justhave to keep being our own
advocates and that part's reallyreally hard, and I know going
(14:29):
through all this is really hard.
I had seen tons of doctorswhile going through all this,
but none of them talked to eachother, so they didn't connect a
lot of the dots, like I saw myeye doctor, I saw my dentist, I
saw my family doctor forbreathing and allergy medication
and things like that.
I was seeing many differentspecialists, but we didn't put
(14:51):
it together that all thesesymptoms could be specific
chronic illnesses.
And now that I have names forthem, there's treatments Well
managing treatments, there'sthings that you can do to make
them better, and so that'sreally why I wanted to talk
about this today, because I knowI'm not the only one.
I know I see people alwayscommenting tons of lists of
(15:14):
symptoms and, don't get me wrong, brain injuries and concussions
put your whole body at a whack,but sometimes it's something
else and Sometimes you're theunlucky one.
I don't really have anotheranswer for it and I don't
believe things happen for areason.
Sometimes you're the unluckyone that deals with the chronic
(15:35):
illness, and I'm telling youthat you can live with it.
It just might be really hard.
Sometimes.
Dealing with chronic illness hasa very different mental state
than dealing with PCS, andthat's because you get to the
point where you know it's notgoing away, where, with PCS,
there is hope, there is recovery.
(15:55):
Tons of people recover.
Tons of people get better.
There's so many things outthere.
Concussion research is justgrowing and growing.
But if you hit the chronicillness stage whether I'm only
talking to one person right now,that's listening to the show
that's in the same boat, that'sall that matters.
But chronic illness is thepoint where you have to Accept
that it's not gonna change and Ithink that's a really hard
(16:17):
thing to get through.
It took me a lot of time.
There's still moments where I'mlike, oh, I'm, this isn't going
away.
Like I get that comment oh,you're so strong, and it's like
I'm not really strong, I don'treally have an option, like
there is no way around this.
This is what, who I am, this iswhat I'm dealing with.
So I just want to put it outthere that if you are going
(16:39):
through this, please reach out,please check out.
Concussion connect even thechronic illness survivors
because a lot of it relatestalking to others who get it
makes a difference, and I'mtelling you it does, because
it's made a big difference forme and you know there's tons of
other places you can go.
But concussion connect isreally Tailored for survivors.
(17:01):
It's not overly symptomaticit's really designed for.
You know there's a lot ofexcitement on it every day.
You can go in, there'ssomething, there's mems that
relate to brain injuries andconcussions.
There's tips on Tuesdays, whichreally can help you.
Wednesdays, there's news.
Thursday, there's the podcast.
Friday there's a health seriesand there's even more that comes
(17:24):
out every month.
As a survivor, I want to help alot of survivors and I also want
to help the people that hit thepart like me.
You know the chronic illnesspart, and when things turn
chronic, your brain has tochange.
You have to learn how to managethese symptoms without the idea
that they're gonna slow down.
And don't get me wrong, thingsflare up, things flare down, but
(17:47):
it's not going away.
So it's a very different mentalstate.
It's definitely something thattakes time, but it's definitely
something I can help you with.
So please reach out, because I'mgoing through it and I know it
can get really tough and and I'mnot gonna say it's this
wonderful thing to deal with,because it's Definitely not PCS
(18:08):
isn't wonderful to deal with,and so you know, if you're
dealing with the time thesymptoms reach out to your
doctors, explain them together,get someone to listen to you.
Maybe they connect, just like aconcussion connect.
It's very important and youknow, I just want to leave with
everyone today that this isn't areason to not have hope that
(18:29):
you won't get better.
It's just to help those whoaren't feel like they're not the
only one, because you're notNeed more than just this podcast
.
Be sure to check out ourwebsite, post concussion Inccom,
to see how we can help you inyour post concussion life, from
a support network to one-on-onecoaching.
I believe life can get betterbecause I've lived through it.
(18:51):
Make sure you take it one dayat a time.
Hi everyone.
I'm your host, Bella Paige, andafter suffering from post
concussion syndrome for years,it was time to do something
about it.
So welcome to the postconcussion podcast, where we dig
deep into life when it doesn'tgo back to normal.
Be sure to share the podcastand join our support network,
Concussion Connect.
Let's make this invisibleinjury become visible.
(00:25):
The post concussion podcast isstrictly an information podcast
about concussions and postconcussion syndrome.
It does not provide norsubstitute for professional
medical advice, diagnosis ortreatment.
Always seek the advice of yourphysician or another qualified
(00:46):
health provider with anyquestions you may have regarding
a medical condition.
Never disregard professionalmedical advice or delay in
seeking it because of somethingyou have heard on this podcast.
The opinions expressed in thispodcast are simply intended to
spark discussion aboutconcussions and post concussion
syndrome.
(01:06):
Do you feel constantlyoverwhelmed by your concussion
symptoms and life changes?
This is where Wombat.
Wombat can help you A newbreathwork and somatic therapy
app powered by neuroscience.
Let's slow down those racingthoughts and give ourselves the
ability to breathe.
Wombat is designed with anunderstanding of the impact of
(01:27):
trauma on individuals, ensuringa safe and supportive
environment for users dealingwith stress, anxiety or post
traumatic experiences.
Go to their website today athellowombatcom.
Welcome to episode number 111 or111 on The Post-C oncussion
Podcast with myself, just BellaPaige, today and I haven't done
(01:51):
a solo episode in a little whileand I usually do these when
things cross my mind and thisepisode is on when things turn
chronic.
I really wanted to talk aboutthis even just for a short
minute today and get it outthere, because it's something
(02:13):
that's really missed in theconcussion world and oh, don't
get me started on how much allof this, this entire podcast of
over 100 episodes, has beenmissed in a lot of the
concussion world.
But we talk about recovery alot and I don't want this
episode to be something thattakes away your hope.
(02:33):
I don't want it to be somethingthat stops you from your
therapy.
I don't want it to be somethingthat kind of crushes you in a
way.
But the reality of this episodeis that we talk about recovery
a lot.
We talk about hope.
(02:54):
We have specialists on heretalking about what's helped and
what they do for their patients,and we talk about survivors and
what they've tried and whatworks and what doesn't work for
them and you know what.
All these things are reallyimportant and it's really
important to try so many things.
(03:14):
The biggest thing about this isyou will never stop finding new
things to try.
I know it might feel like that.
I definitely felt like that,even had doctors that told me
that there was nothing left, butthere is always something, and
that is actually something I doI can help you with.
If you ever have a hard timefinding specialists in your area
and all that, we do haveone-on-one coaching on our
(03:36):
website.
You can sign up Super simple.
I hope you have a time thatworks for you and I will help
you find those people for you.
I will help you find the nextrecovery step for you, because
when you're navigating it byyourself or with people that
have nipped, been through it,it's really tough.
So if you take it from myperspective as someone who's
(03:57):
done this for a very long time,has tried most of these
therapies herself, has talked tothe experts I can really help
you get to the right medicalprofessionals.
So you know, go to the website.
If you go under more, you canfind one among coaching with me
and I can definitely help youwith that.
Now, if we go back to thechronic part, if we talk about
(04:17):
recovery and how you can recoverand lots of people, I do
believe, recover and I believerecovery is something that
everybody deals with in adifferent way.
I've had guess recover to thepoint where they don't have any
symptoms and I've had guessrecover to the point where they
are recovered but they're stilldealing with symptoms.
(04:38):
And so something I want to talkabout, because if you've been
on Concussion Connect, then youknow I was at Mayo and you know
I've been there quite a fewtimes since then and I've spent
a lot of time with a lot ofspecialists and what can happen
after a concussion.
And you know don't quote mebecause the research on this is
something that is very new, it'sreally developing.
(05:00):
You know you hear about CTE andCTE is real.
Cte is terrifying, if you askme.
You know what.
It is scary and that's okaythat we're scared of things.
But there's also another paththat can happen after a
concussion and the stress of aconcussion and I know we don't
think it's just stress, butstress on your body is something
(05:22):
that can cause illnesses andthere is a lot of research
articles that back me up on thatone.
So the other path is chronicillness, and chronic illnesses
are things that don't go away.
People don't understand whatchronically means.
So chronic illness is somethingthat you know.
(05:45):
Post concussion syndrome orpersistent concussion symptoms
has an end date.
It's usually just an unknownend date.
Where chronic illnesses thatend date is gone.
There is no end date, there isno therapies, because this is it
, this is what you're dealingwith, and then there's just the
ways on managing that.
(06:06):
A lot of time that's an aerobicexercise lifestyle, all these
things.
I am working on building acourse that kind of goes with a
lot of these things, because itnot only helps post concussion
syndrome survivors and braininjury survivors, it also helps
the people that hit the nextpart, which is the chronic
illness part, and I don't knowwhat percentage of people this
(06:29):
is.
It could be 1%, it could behigher, it could be 10%.
I don't know.
I don't have the answer forthat, but I do know it's enough
people that have noticed thatit's not just me.
I have been diagnosed with fourchronic illnesses and they are a
result of my concussions and mystress, as we like to call it
(06:54):
in an easier way, of the firstfew years, and I don't like to
blame stress, but if you thinkof the state that your body
might have been in if you werelike me, where you couldn't get
out of bed, you couldn't get upand down the stairs, you could
barely breathe most days yourhead was in such severe pain.
You were very depressed.
That's a lot on your body to gothrough every day, especially
(07:16):
if it's for years.
So there is sometimes anaftermath to that and I have
these chronic illnesses.
One of the common ones a lot ofpeople hear about is POTS, and
POTS is PosteroarthestheticTachycardia Syndrome.
We do have a course onconcussion connect about this,
on kind of living with it, andit's something that can really
range from people who faint andcan barely exercise to people
(07:40):
that when they stand up they getreally dizzy.
They have a hard time in theheat.
It's not always that extreme.
It really depends on who youare, and that's another thing
about chronic illness is it goesa lot with the concussion stuff
because it's sometimes all overthe place.
The biggest reason I wanted tohave this mini episode this week
(08:00):
is Because I know there's otherpeople out there that are
really questioning if they havePCS anymore.
I know there are people who areout there questioning that they
just don't get why they stillhave symptoms, and you know what
?
I was one of those people forabout three years.
(08:20):
Cognitive FX is aresearch-driven clinic that has
successfully treated thousandsof patients who have
long-lasting symptoms fromconcussions or other
brain-related injuries.
Cognitive FX has an innovativeapproach to recovery that uses
an advanced fMRI scan to map thefunction in your brain.
Treatment at Cognitive FX takesfive days to complete and uses
(08:42):
your fMRI scan as a guide andbaseline to ensure that your
treatment is personalized andeffective.
This means that you won't needto schedule and keep track of
multiple specialists, locations,dates, times or therapies,
because it will all be preparedfor you when you arrive.
Once you've completed theirtreatment, you receive a
personalized at-home plan tocontinue your recovery and gain
(09:03):
access to their online patientportal that has instructional
videos and resources for yourcontinued recovery.
Conveniently, cognitive FX alsooffers free consultations, so
both you and the doctors canensure that treatment is a good
choice for you and your injury.
Visit their website atCognitiveFXUSAcom.
Don't delay your recovery anylonger.
(09:25):
Find solutions at Cognitive FXtoday.
Welcome back to thePost-Concussion Podcast with
myself, bella Paige.
So forever on the show I'vebeen saying I've had PCS for
over nine years and then, afterMayo, that swapped I really paid
attention to seven years.
I had it for about seven yearsand that's because that's after
(09:46):
Mayo I realized when it switched, when it wasn't really PCS
anymore and it was more thechronic illness stuff that
started to flare up.
And it's flooded up more andmore the last few years.
But now I have help, now I havedoctors, but that's because we
were able to name the illnesses,and naming chronic illnesses is
something why I really wantedto talk about this, because it
(10:08):
can change your life.
And I'm saying that because alot of the time we deal with
things every day and we justshrug them off and it's not
always normal.
And I'm going to list about 15things maybe not 15, but I'm
going to list some of thesymptoms that I had before I
went to Mayo that I thought thateverybody dealt with.
(10:31):
So not everybody dealt with.
That I thought were just likefrom the head injuries, that
they were just things that Idealt with, that there was
really nothing to do about them,and then they were just there.
Okay, first one always cold.
I was always so cold that Iwould shiver in plus 15, which
(10:53):
is or 59, 60 degrees Fahrenheit,depending on you know what part
of the world you live in.
My teeth were starting to fallapart and my dentist was working
on it and accused me of beingbulimic, which I am not.
So that was a stressful momentin life.
My chest felt like I wasdrowning every single time I
(11:14):
exercised.
Even just going for a hike, Iwould have to lay down sometimes
or sit down because I felt likeI was being crushed.
I would get really nauseousduring certain cardio, like I
would just felt like I was goingto pass out, but I wouldn't hit
the point of passing out.
My stomach was super upset allthe time.
It would always rotate betweenbeing like rock solid and
(11:34):
bloated to okay.
It was just awful.
I had a lot of trouble witheating.
Food sometimes was stuck in mythroat.
I needed water to eat.
I could not eat like a piece oftoast, bread and apple without
drinking water to get it down.
My eyes were so dry that Icouldn't wear contacts anymore
(11:55):
and it was creating a ton ofheadaches.
They were in tons of pain allthe time.
If I wore contacts for about anhour or two I would have to
take them out.
I would have stars and halos inmy vision a lot of the time
when exercising I had a lot ofchronic fatigue, some days but
it would go away, and at othertimes night terrors would get
(12:16):
really bad.
I once went into a sauna andwhen I came out my face couldn't
get touched because my skin wasso sensitive.
I hands wet, purple, justtrying to lift bags into a truck
and the cold caused a lot ofpain in my whole body.
And you know, that's just a fewof the ones that I can even list
(12:38):
that I can think about rightnow, and you know some of those
are very obvious, but whenyou've been sick since you were
15, they don't seem that bad.
And I think that was part ofthe problem is I was throwing
all of these health symptomsinto a bucket of concussion and
sometimes you have to get rid ofthat bucket and realize that it
could be something else.
(12:58):
And my sister, who's a nurse,basically ripped me apart for
having all these symptoms andnot mentioning it to anybody
because a lot of them I wasself-managing the stomach
symptoms, I was self-managingwith different diets, eating
things, and it's not that what Iwas doing was the wrong
treatment, but sometimes there'smore that you can do.
So the swallowing, the eyes andall those types of symptoms go
(13:22):
with something called chokrins,which is an autoimmune condition
that I have got.
Once I got proper help with myeyes rather than just going to
my eye doctor about havingtrouble with my contacts, so
many of my headaches havedisappeared that I knew were
from my eyes.
So it's just sometimes theselittle things can really help,
like when I used to get out ofbed I would just look drunk.
(13:44):
As my girlfriend's wouldexplain it on a weekend is that
I look like I was drunk when Iwalked down the hall, but I
didn't realize that that's notnormal.
And I knew it wasn't normal,but I didn't realize that it was
something that I could fixbecause it was just something
that I knew.
If I got up slowly then I coulddeal with it.
But now I have a ton ofsolutions to prevent that.
(14:05):
Now I don't feel like thatanymore at all in the morning
anymore.
So it's just a reminder thatsometimes things aren't your
concussion, sometimes things area continuance of your
concussion and sometimes we justhave to keep being our own
advocates and that part's reallyreally hard, and I know going
(14:29):
through all this is really hard.
I had seen tons of doctorswhile going through all this,
but none of them talked to eachother, so they didn't connect a
lot of the dots, like I saw myeye doctor, I saw my dentist, I
saw my family doctor forbreathing and allergy medication
and things like that.
I was seeing many differentspecialists, but we didn't put
(14:51):
it together that all thesesymptoms could be specific
chronic illnesses.
And now that I have names forthem, there's treatments Well
managing treatments, there'sthings that you can do to make
them better, and so that'sreally why I wanted to talk
about this today, because I knowI'm not the only one.
I know I see people alwayscommenting tons of lists of
(15:14):
symptoms and, don't get me wrong, brain injuries and concussions
put your whole body at a whack,but sometimes it's something
else and Sometimes you're theunlucky one.
I don't really have anotheranswer for it and I don't
believe things happen for areason.
Sometimes you're the unluckyone that deals with the chronic
(15:35):
illness, and I'm telling youthat you can live with it.
It just might be really hard.
Sometimes.
Dealing with chronic illness hasa very different mental state
than dealing with PCS, andthat's because you get to the
point where you know it's notgoing away, where, with PCS,
there is hope, there is recovery.
(15:55):
Tons of people recover.
Tons of people get better.
There's so many things outthere.
Concussion research is justgrowing and growing.
But if you hit the chronicillness stage whether I'm only
talking to one person right now,that's listening to the show
that's in the same boat, that'sall that matters.
But chronic illness is thepoint where you have to Accept
that it's not gonna change and Ithink that's a really hard
(16:17):
thing to get through.
It took me a lot of time.
There's still moments where I'mlike, oh, I'm, this isn't going
away.
Like I get that comment oh,you're so strong, and it's like
I'm not really strong, I don'treally have an option, like
there is no way around this.
This is what, who I am, this iswhat I'm dealing with.
So I just want to put it outthere that if you are going
(16:39):
through this, please reach out,please check out.
Concussion connect even thechronic illness survivors
because a lot of it relatestalking to others who get it
makes a difference, and I'mtelling you it does, because
it's made a big difference forme and you know there's tons of
other places you can go.
But concussion connect isreally Tailored for survivors.
(17:01):
It's not overly symptomaticit's really designed for.
You know there's a lot ofexcitement on it every day.
You can go in, there'ssomething, there's mems that
relate to brain injuries andconcussions.
There's tips on Tuesdays, whichreally can help you.
Wednesdays, there's news.
Thursday, there's the podcast.
Friday there's a health seriesand there's even more that comes
(17:24):
out every month.
As a survivor, I want to help alot of survivors and I also want
to help the people that hit thepart like me.
You know the chronic illnesspart, and when things turn
chronic, your brain has tochange.
You have to learn how to managethese symptoms without the idea
that they're gonna slow down.
And don't get me wrong, thingsflare up, things flare down, but
(17:47):
it's not going away.
So it's a very different mentalstate.
It's definitely something thattakes time, but it's definitely
something I can help you with.
So please reach out, because I'mgoing through it and I know it
can get really tough and and I'mnot gonna say it's this
wonderful thing to deal with,because it's Definitely not PCS
(18:08):
isn't wonderful to deal with,and so you know, if you're
dealing with the time thesymptoms reach out to your
doctors, explain them together,get someone to listen to you.
Maybe they connect, just like aconcussion connect.
It's very important and youknow, I just want to leave with
everyone today that this isn't areason to not have hope that
(18:29):
you won't get better.
It's just to help those whoaren't feel like they're not the
only one, because you're notNeed more than just this podcast
.
Be sure to check out ourwebsite, post concussion Inccom,
to see how we can help you inyour post concussion life, from
a support network to one-on-onecoaching.
I believe life can get betterbecause I've lived through it.
(18:51):
Make sure you take it one dayat a time.
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