October 26, 2023 • 23 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/
--
Battling post concussion syndrome has been quite the journey, a winding road filled with challenges and triumphs. As someone who's been there, I, Bella Paige, want to share my experiences navigating the labyrinth of recovery - from managing therapies to assessing progress. Remember, sometimes the greatest therapy is just being 'you' for a while, stepping away from your patient persona, and appreciating your everyday self.
Living with post concussion syndrome is not just about managing symptoms, it's about understanding them and acknowledging the multilayered nature of this condition. Together, we'll delve into the complexities of PCS, discussing everything from light sensitivity to headaches, the struggles of maintaining a daily life, and the importance of setting realistic goals on your path to recovery. But remember, it's not a race, acceptance is key and assessing your progress is crucial.
Remember, you're not alone.
Find Show Notes, Transcript & More: https://postconcussioninc.com/podcast
Want to find out about my future books?
Subscribe to my new email list: https://barry-writes.kit.com/subscribe
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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.
(01:07):
Hi everyone, this is episode 121of the Post Concussion Podcast
and we're on video now that youmay have seen that.
If you haven't, please go checkit out and hit subscribe.
Make it an account today onYouTube through your email,
whatever you use, and subscribe,even just to my show.
Totally, make my day.
I totally appreciate it, as weneed to get to a thousand and
(01:30):
we're not even close because Ijust launched this a few weeks
ago, so please check that out.
If you want to just watch smallclips, my favorite parts of the
episodes they're on YouTube, aslong as the full episodes as
well, but those are just audioversions, just like you'd find
on Apple podcasts and things.
And don't forget to alsosubscribe on there, because I
(01:50):
would appreciate it, becausesubscribing makes my day and,
yeah, just takes two seconds outof your day and makes my day
light up, so that seems worth it, right?
So make sure you subscribe,take a minute, go to YouTube,
hit that button.
If you're watching this onYouTube, hit that button right
now, because that's basicallylike sponsoring the podcast.
(02:10):
It's the same thing.
I understand that so manypeople have financial
difficulties after concussions,which is why we opened up
Concussion Connect to being freefor members, which has made a
world of a difference, so makesure you check that out.
It's a bunch of survivors in asafe place, safe community, and
we have things that come outevery week that are great for
you to interact with.
(02:31):
You can post things, askquestions, kind of do whatever
you want, and that's like one ofthe best parts of it.
So make sure you take a look atthat.
But what I really want to talkabout today is, I think, the
thing that I'm going to get abacklash for, but not from
survivors.
I think survivors will get it.
I think healthcareprofessionals might not love me
(02:53):
after this episode, but that'stotally fine, okay.
But what I'm actually going totalk about taking a break and I
don't mean taking a break in away from sports that I've talked
about before, where you reallydo need to take a break as an
athlete to get better but thisis more like taking a break from
being a patient.
So if you know what I'm talkingabout, you might understand.
(03:15):
We talked about this in supportgroup just a few weeks ago,
where we have one the part groupmember who actually takes
December off annually fromtherapy, being a patient and all
that, and I'm telling you whyyou should do that and kind of
the importance of taking breaks.
A lot of the time we get intothis therapy mode and if you've
(03:35):
ever not done therapy for awhile or not known about certain
therapies and say you go tooccupational therapy or physical
therapy or vestibular therapyfor the first time and you come
home and your symptoms are outof control, that's kind of
because you're pushing yourself,you're pushing your brain,
you're pushing things thatyou've never done before and, of
(03:56):
course, as therapy progresses,all these things are supposed to
get better.
But how are you supposed tojust like know if it's actually
better if you're going everyweek?
Because if you're going everyweek you can see progression.
But what if you were justliving everyday life?
And sometimes it's justexhausting If you've done it
before?
You know, trying to manage allyour therapies is intense.
(04:18):
You know it's very intensetrying to keep up with all those
daily activities where it'slike Monday, tuesday, wednesday,
thursday, friday, saturday,sunday pick a day off that you
want, and you are going to dothese exercises every single day
and they're tiring, and that'sokay that it's so tiring.
But it's really where you canbenefit from taking a break.
And I'm talking about this froma physical standpoint and a
(04:40):
mental standpoint.
And this is the part wheremedical professionals might not
agree, because they want you toget better.
And proactive therapy isimportant, especially in the
beginning.
But if you're someone like me,like a lot of the survivors in
KINGDOM Connector, you've beendoing this for a few years or
you've been suffering for areally long time, maybe take a
(05:01):
break and maybe you'll notice,you know, maybe things will get
worse and then you know, youknow what I need to be in these
therapies because I'm, you know,tanked by taking a break but
maybe, just maybe, you'll noticea huge improvement and like not
saying it's going to be likeextraordinarily huge.
But just the relief of nothaving to worry about going to
(05:23):
therapy every day or twice aweek or once a week for an hour
and not doing at home exercises,and just being a person before
being a patient, can be reallybeneficial.
And I'm not saying that therapyisn't important.
I'm just saying sometimes it'sokay to take a break and just be
you.
I've talked about this on thepodcast a little bit about how I
(05:44):
would just kind of give up, Iguess, but it wasn't really
giving up, it was more like justbeing me for a little bit
without my illness.
And you know that's not alwaysas easy as it sounds because I
would get overwhelmed if you'regoing to the neurologist and
going to this therapy and thattherapy and I just I couldn't
keep up with all the things athome.
But I was still a kid, like Istill was going to university or
(06:08):
going to high school and Istill wanted to go with my
friends when I could, and Istill want to get schoolwork
done and all these things.
So when you add therapy on topof it, it's a lot on top of
being ill and having dailysymptoms.
So sometimes if you cut thatout I'm not saying cut out
medications and all that causesometimes that can be a very
dramatic effect.
I used to do that.
But you still only last aboutthree months.
(06:30):
Usually the first month wasgreat, cause I just kind of felt
like I got to be a person.
And then by the third month Iwas back in therapy and back on
medications because I was like,okay, can't do this anymore.
So I'm just saying pick a shortperiod of time, but maybe
you'll really like it.
Maybe you'll pick and only goback to a few therapies.
Maybe you'll switch it up andmaybe you realize that you
actually need something else.
But I'm telling you that it'sokay to take a break.
(06:53):
I actually had somebody messageme on concussion connect the
other day and they thanked mefor giving them permission.
You don't need permission totake a break from therapy.
If you're exhausted and you'reburnt out and you need a break,
walk away for a minute.
That's okay.
I know there's all thesestudies that say all these
(07:13):
things are very important foryour brain, but your mental
health is important too and yourwellbeing in general.
And so if you're dreading goingto therapy every week and you
aren't even keeping up with yourexercises at home so you're not
progressing, then it's okay.
I'm telling you it's okay andI'm telling you you know, bring
it up with your medicalprofessionals, tell them, ask
(07:34):
them.
I'm just gonna go take a breakfor a few weeks and then I'll be
back.
Do you think that's okay?
And see what they have to say?
Maybe there's a serious reasonthat they really don't think you
should, but I believe most ofthem will be okay with it
because they'll understand thatyou know what.
It's okay to take a break rightnow because it's gonna help you
in the end right by gettingthat reset in your brain that's
(07:55):
already injured.
It gives your brain a littlebit of time to heal.
It kind of gives you time torest and kind of reset.
Take a view on what really isaffecting you day to day,
because maybe it's just yourtherapy sessions that are
flaring you up like crazy andnot everything in daily life so
much anymore.
So consider it.
It's not that easy but, if youmay know, sometimes taking a
(08:16):
break is okay, I think.
Sometimes we think it's givingup, like that member that
messaged me saying, like I gavethem permission I was like I
didn't give you permission to doanything.
I just say it's okay to justlive with your illness, live
with it.
Sometimes it's not going awayand I don't want to be the
person that says PCS, postconcussion syndrome, persistent
concussion symptoms.
(08:36):
You know me, call it what youwant.
I'm not saying that it'saffecting you for the rest of
your life, but some people it is.
Some people end up in thebandwagon like I do.
Some of you already know this.
You're four years out, fiveyears out, six years out.
I've talked to people who are20.
They're way into their 50s.
They got injured when they wereyounger.
They've had brain injuries,they have symptoms and of course
(08:59):
, they're less severe, but theystill exist and okay.
So now we have all thesesymptoms.
Great, let's do what we can toget rid of them.
That's what therapies anddoctors and medical
professionals are for.
But what about the rest of yourlife?
Because therapy sessions anddoctor's appointments are only
so much of your day.
So what about the rest of yourlife?
You still want to.
(09:19):
Maybe go get a job, maybe youwant to go to school, maybe you
want to play sports if you cansafely.
Maybe you just want to runaround with your kid.
That's where the living withillness is just as important as
the treating it, because youhave to live with it, because
maybe it's not going away in amonth, maybe it's not going away
in six, maybe you're theunlucky person that's stuck with
(09:41):
things for life.
And I don't want to be negativebecause I'm one of those people
.
I have four chronic illnesses.
That's four.
And yes, my nails, if you're onYouTube right now, have ghosts
on them and pumpkins.
But yeah, four illnesses to men.
And I think if I just focusedon treating them, even though
these ones aren't treatableanymore, I'd be burnt out.
(10:02):
We're living with them.
I do really well and naturally,by living with PCS I found I
improved a lot faster because Iwasn't so focused and so angry
and so bent up about comparingmyself week to week.
I just kind of took time tolive life and I think just by
exposing myself exposure therapyis a huge thing in the
(10:24):
concussion world right now itactually helped me a lot just by
going out, just by doing things, just by taking things and baby
steps, by measuring thingsmyself, seeing how I was doing,
realizing when to take breaks,realizing what was making worse.
So sometimes that's okay and Idon't want to go in circles here
, but I just really want to talkabout, like learning to live
(10:45):
with your illness is somethingthat takes a different mindset,
then you probably will be in.
If you've just started this I'msaying like just started as in
like the first two years, livingwith illness probably isn't on
your list to do because, likeyou know what, keep going, push
as hard as you want to try toget better.
But if you're at those twoyears or more, I'm not saying
(11:08):
give up on therapy, I'm not allthese things.
I've done tons of therapieslater on that have helped me
significantly, especially eyetherapy.
But also learn to live with it.
Don't be so focused on therecovery and be focused on being
able to live with what you'vegot right now, Because then if
things do get better, it justgets easier.
Like if you can live with allof your symptoms, as bad as they
(11:29):
are right now, depending onwhere you're at.
I know many people that arestruggling severely every day
and that's a little different.
But if you're dealing withminor symptoms and I'm not
saying they're minor, but minorcompared to some extreme
situations learn to live withthem.
How can you get through yourday okay without exploding your
brain or being wiped out for aweek or five days after just
(11:52):
doing one thing?
How can you be successful inyour own life in your own way,
whether that's volunteering orjust going for a walk every day
or managing to read a book?
What's important is, what areyou looking for in your life?
And, of course, we have tochange these things and
readdress them.
As someone who's ill, what's onmy goal horizon was not the
(12:13):
same as what my goal horizon wasbefore I was ill, but it's
really important to understandthat these things can change
your life.
So just think about it Now.
Take the time to reflect.
Where am I at in my recovery?
Am I just spiraling in loops?
Has it been years?
Have I ever considered justtaking a break?
Have I ever actually activelythought about how to live with
(12:35):
this versus how to just fight it?
Because fighting it, I can tellyou from experience it's
exhausting.
We can fight it all we want,but we usually lose most days
than not, and that's just.
That's a fact.
So I just, you know.
Wanna throw in one thing Don'tforget to subscribe to the
podcast, like right now, cause Iwill love you forever,
(12:59):
especially if you subscribe onYouTube.
Did you want to createawareness about concussions?
You can check out our entireclothing line through the link
in the episode description or goto our website
postconcussioninkcom and clickawareness merge From t-shirts,
sweaters, tank tops and multipledesigns, including the podcast.
Nothing mild about concussionand more.
(13:21):
Make sure to pause this episoderight now and order yours
before you forget, just like Iwould Welcome back to the post
concussion podcast with myself,Bella Paige.
And so the other thing I want totalk about is how hard it is to
keep up with the daily living,and you might know what I mean,
depending on what you're dealingwith.
And that's like maybe noteating gluten is really good for
(13:45):
you, maybe you've noticed thatit helps all your symptoms and
sometimes you're gonna screw up,but that doesn't mean you don't
know what you're doing.
For example, I have pots andI'm sure lots of you kind of
know a little bit more aboutdysautonomia.
If you don't, we do have anentire podcast on it and it's
just getting.
The research is growing.
I will make sure to haveanother episode on it in the
next few months, cause I thinkthe research has already changed
(14:07):
tons from just last year.
But, for example, I have tothink these really gross salty
drinks every day I actually haveone right here they're
disgusting and that is becausethere's so much salt in it.
I had a few relaxing days forthe first time in a weekend a
few weekends ago.
So I just didn't really bother.
I was like I'm not really doinganything.
What's it gonna hurt?
Oh, it hurt me, that's.
(14:27):
What it hurt Was just a fewdays of not drinking that salt.
I was like tanked, like I couldbarely get out of bed.
The nausea, the spins in themorning, the whoosh of like,
like when you stand up, and likeall the blood drains from your
head, and it's just like thatfeeling was all back and I'm
like, oh, I need to chuck somesalt, take some salt pills,
(14:48):
figure it back out, let my bodyrebalance, rest for the day.
But I didn't get mad at myselfbecause you know what?
I was relaxing for those fewdays and maybe my health was on
the back burner, which I paidfor.
But I didn't get mad at myselffor paying for it.
I just accepted it, which issometimes very hard, depending
on your situation, of course,with work, family and
obligations but just don't beatyourself up.
(15:10):
I think I used to just get somad at myself of why I wasn't
better, or what was I doingwrong?
Or was I not trying hard enoughin therapies?
I wasn't.
Believe me.
I'm telling you, I was ahorrible patient.
Because I was a horriblepatient, I hated all of it.
So the other really thing I wantto talk about today, other than
, you know, learning to livewith this, subscribing to the
(15:30):
podcast on YouTube, becauseyou're my favorite people, and
things like that I also justwant to throw in have you
checked out our clothing yet?
Because Our clothing line isactually great.
You just want to create smallamounts of awareness for
concussions and brain injuries.
It's a really good place tostart.
You can just buy a t-shirt or asweater.
(15:51):
There's tank tops too, and Iabsolutely love mine, and so the
other thing I want to talkabout was actually something
impromptu.
Post-concussion life is tough.
I think it's something that wedon't talk about a lot, because
we talk on the podcast aboutthings like having a hard time,
(16:12):
but we don't always talk abouthow bad that time could be.
And I don't like to get low onthe podcast too much, because
it's supposed to be uplifting,it's supposed to give you ideas,
it's supposed to give you hope,and I want it to do all those
things.
I want it to be a good placefor you to go, but I also want
it to be somewhere that you canrelate to, and that's kind of
(16:37):
what this next part's about andthat's what PCS is actually like
.
I haven't had PCS for a whilebut I have chronic illness and
it's not easy.
I wouldn't say there's anythingeasy about it.
There is benefits, for sure thatI've gotten out of being ill
like all of this Understandingpeople a thousand times more
(16:59):
than I ever would have in thepast.
Like I can call out whensomeone is depressed or
struggling or having issues waybefore anyone else, because I
know all the telltale signs.
I had functional depression alot of the time, so you didn't
really know.
I would walk in and have aconversation with people and
when I turned around there'd betears streaming down my face
(17:22):
because I had such a hard timeactually holding it together
just for that conversation,whether I was in so much pain or
just mentally struggling somuch light sensitivity wasn't
like, oh, the lights were toobright, or were you staring to
the sun and it's like, ah, no,it's like the lights in front of
me right now are too bright andI'm in a dark studio.
(17:43):
Everything was too bright.
The sun outside was too bright,my screen on my phone was too
bright.
People still make fun of mebecause if you actually look at
my phone, it's yellow, because Ifind the blue light is always
annoying on my phone, so it'stinted in night mode 24, seven
around the clock.
You can do that.
I actually have a video on ourhelp series on concussion
(18:04):
connect on how to do that.
If you ever need to, you know,change your phone around.
That's just light sensitivity.
But then what if you added noisesensitivity?
So if you think aboutconcussion symptoms, like layers
it's, you have to remember thatthey're not individual.
You're not dealing with one andnot the other.
So you're dealing with lightsensitivity, everything's really
bright.
Your eyes may be hurt, you knowit's really hard to kind of go
(18:26):
out and function because you'rejust overwhelmed with the light.
But then you add noise.
Okay, so people talking can betoo loud.
Music playing can be too loudsome days.
A horn, a bird, wind doesn'talways matter, sometimes it's
just noise in general, becauseyour ears are really sensitive,
so you add that to your lightsensitivity.
(18:47):
So now you have two things, twosenses, being completely
overloaded.
And if you're like me, I wasactually really sensitive to
scent when my headaches werereally bad.
So I still remember the daydriving to a special medical
clinic.
Actually, my sister put lipchap on and she was in the front
seat.
I was like what is that smell?
Like I like overreacted, but Ididn't at the same time, and
(19:10):
she's and my mom's like she'sreally sensitive to smells and
my sister's like lip chap, she'slike I'm not even near you and
I was like I know, because likeinstantly when I smelled it,
like I had all this pain in mynose.
So I got pain in my eyes, I gotpain in my ears, I got pain in
my nose and then I got aheadache, because most people
have headaches.
If you're wondering why I dotmy eyes, it's because I got
(19:30):
something called an autoimmunecondition, called showgreens.
You won't see this on therecorded podcast, but you will
see it on the YouTube.
But so all those thingsheadaches.
Now you can't think because youhave all these overloaded
sensations.
You can't focus because yourvision is not picking up things
correctly.
So you're adding all theselayers, and all these layers are
(19:53):
overwhelming and then all thetherapies to address them are
really difficult as well,because you know you do one but
it flers up the other, so thenyou feel like it's not worth it,
but you have to keep doing itto get better.
So it's just really importantto understand the multi facets
of concussions and they do saythere's six different pillars of
(20:14):
concussions and all thesethings.
But I find everybody'sexperience is so different.
I don't think anybody fits intoone category.
I think we're multi-dimensional, and so are brain injuries, and
you know, I get that it'sreally tough.
I get that you might bestruggling mentally a lot right
now, and maybe you just foundthe podcast, maybe you've been
(20:36):
listening to it for a while, andI'm sorry if you're struggling
that much, but I can tell youthat things get better.
They get so much better becauseit's kind of a lot better for
me.
Things are doing.
You know, other than what?
I forget to drink salts, go forbaths that are way too hot.
You know there's a list ofthings that I definitely can't
do, that I used to be able to,but I wouldn't say I'm
(20:57):
struggling in life, like I can'tlive a good life, but it's
definitely not the life that youmight expect and that's okay
too.
It's just really important tokind of take a different
approach, maybe with your life,and that might not be so easy,
and so don't be afraid to trynew things.
Don't be afraid that you're ill, because it's not the end of
(21:20):
the world's, but I guarantee ithas felt like that at moments
and I don't deny that, becauseI've felt like that too.
And if you're dealing with likewe talked about the therapies
and you're going and you'redoing so many, that's great, but
you've been doing it for areally long time You're allowed
to take a break and go back.
There's nothing wrong withtaking a break.
Don't be ashamed of taking abreak.
(21:40):
You're not giving up onyourself.
You're just giving yourselfmaybe some time to just Be who
you are a person with illnessand you, there's a lot more to
you than just that.
Took me a long time to realizethat there's so many things to
us and it doesn't have to be onebig thing.
I said show jumping and Ithought that that was my life
(22:00):
and that's who I was.
But I'm so many things.
I'm so many more things than Iever imagined.
Illness kind of makes us feellike the only thing we are is
ill, because it's the only thingwe're doing right now.
But you're so much more thanthat and don't forget it, and I
want to thank you for listeningto today's episode.
It's kind of a little bit, youknow, a little different, but I
(22:23):
just want to talk about a fewthings.
Of course, you can actually sendrequests for specific episodes.
If you're wondering why certainspecialists have come on the
show, it's because people haverequested for a topic that they
specialize in.
So don't be afraid to reach out.
Don't be afraid to reach out inconcussion connect.
I'm usually a thousand timesfaster about answering on there
and I hope to see you on it.
And do not forget to subscribe.
(22:45):
I'm saying that in my veryserious voice.
That actually exists, don'tforget.
I would appreciate it and I'lllove you a bit more for it,
because, honestly, theconcussion community is
incredible.
There's one community that'smore supportive than anything
I've ever been a part of in myentire life.
It's this.
So don't forget to hit thatbutton on whatever service
(23:07):
you're on.
Subscribe today.
Have a good day, need more thanjust 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.
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.
(01:07):
Hi everyone, this is episode 121of the Post Concussion Podcast
and we're on video now that youmay have seen that.
If you haven't, please go checkit out and hit subscribe.
Make it an account today onYouTube through your email,
whatever you use, and subscribe,even just to my show.
Totally, make my day.
I totally appreciate it, as weneed to get to a thousand and
(01:30):
we're not even close because Ijust launched this a few weeks
ago, so please check that out.
If you want to just watch smallclips, my favorite parts of the
episodes they're on YouTube, aslong as the full episodes as
well, but those are just audioversions, just like you'd find
on Apple podcasts and things.
And don't forget to alsosubscribe on there, because I
(01:50):
would appreciate it, becausesubscribing makes my day and,
yeah, just takes two seconds outof your day and makes my day
light up, so that seems worth it, right?
So make sure you subscribe,take a minute, go to YouTube,
hit that button.
If you're watching this onYouTube, hit that button right
now, because that's basicallylike sponsoring the podcast.
(02:10):
It's the same thing.
I understand that so manypeople have financial
difficulties after concussions,which is why we opened up
Concussion Connect to being freefor members, which has made a
world of a difference, so makesure you check that out.
It's a bunch of survivors in asafe place, safe community, and
we have things that come outevery week that are great for
you to interact with.
(02:31):
You can post things, askquestions, kind of do whatever
you want, and that's like one ofthe best parts of it.
So make sure you take a look atthat.
But what I really want to talkabout today is, I think, the
thing that I'm going to get abacklash for, but not from
survivors.
I think survivors will get it.
I think healthcareprofessionals might not love me
(02:53):
after this episode, but that'stotally fine, okay.
But what I'm actually going totalk about taking a break and I
don't mean taking a break in away from sports that I've talked
about before, where you reallydo need to take a break as an
athlete to get better but thisis more like taking a break from
being a patient.
So if you know what I'm talkingabout, you might understand.
(03:15):
We talked about this in supportgroup just a few weeks ago,
where we have one the part groupmember who actually takes
December off annually fromtherapy, being a patient and all
that, and I'm telling you whyyou should do that and kind of
the importance of taking breaks.
A lot of the time we get intothis therapy mode and if you've
(03:35):
ever not done therapy for awhile or not known about certain
therapies and say you go tooccupational therapy or physical
therapy or vestibular therapyfor the first time and you come
home and your symptoms are outof control, that's kind of
because you're pushing yourself,you're pushing your brain,
you're pushing things thatyou've never done before and, of
(03:56):
course, as therapy progresses,all these things are supposed to
get better.
But how are you supposed tojust like know if it's actually
better if you're going everyweek?
Because if you're going everyweek you can see progression.
But what if you were justliving everyday life?
And sometimes it's justexhausting If you've done it
before?
You know, trying to manage allyour therapies is intense.
(04:18):
You know it's very intensetrying to keep up with all those
daily activities where it'slike Monday, tuesday, wednesday,
thursday, friday, saturday,sunday pick a day off that you
want, and you are going to dothese exercises every single day
and they're tiring, and that'sokay that it's so tiring.
But it's really where you canbenefit from taking a break.
And I'm talking about this froma physical standpoint and a
(04:40):
mental standpoint.
And this is the part wheremedical professionals might not
agree, because they want you toget better.
And proactive therapy isimportant, especially in the
beginning.
But if you're someone like me,like a lot of the survivors in
KINGDOM Connector, you've beendoing this for a few years or
you've been suffering for areally long time, maybe take a
(05:01):
break and maybe you'll notice,you know, maybe things will get
worse and then you know, youknow what I need to be in these
therapies because I'm, you know,tanked by taking a break but
maybe, just maybe, you'll noticea huge improvement and like not
saying it's going to be likeextraordinarily huge.
But just the relief of nothaving to worry about going to
(05:23):
therapy every day or twice aweek or once a week for an hour
and not doing at home exercises,and just being a person before
being a patient, can be reallybeneficial.
And I'm not saying that therapyisn't important.
I'm just saying sometimes it'sokay to take a break and just be
you.
I've talked about this on thepodcast a little bit about how I
(05:44):
would just kind of give up, Iguess, but it wasn't really
giving up, it was more like justbeing me for a little bit
without my illness.
And you know that's not alwaysas easy as it sounds because I
would get overwhelmed if you'regoing to the neurologist and
going to this therapy and thattherapy and I just I couldn't
keep up with all the things athome.
But I was still a kid, like Istill was going to university or
(06:08):
going to high school and Istill wanted to go with my
friends when I could, and Istill want to get schoolwork
done and all these things.
So when you add therapy on topof it, it's a lot on top of
being ill and having dailysymptoms.
So sometimes if you cut thatout I'm not saying cut out
medications and all that causesometimes that can be a very
dramatic effect.
I used to do that.
But you still only last aboutthree months.
(06:30):
Usually the first month wasgreat, cause I just kind of felt
like I got to be a person.
And then by the third month Iwas back in therapy and back on
medications because I was like,okay, can't do this anymore.
So I'm just saying pick a shortperiod of time, but maybe
you'll really like it.
Maybe you'll pick and only goback to a few therapies.
Maybe you'll switch it up andmaybe you realize that you
actually need something else.
But I'm telling you that it'sokay to take a break.
(06:53):
I actually had somebody messageme on concussion connect the
other day and they thanked mefor giving them permission.
You don't need permission totake a break from therapy.
If you're exhausted and you'reburnt out and you need a break,
walk away for a minute.
That's okay.
I know there's all thesestudies that say all these
(07:13):
things are very important foryour brain, but your mental
health is important too and yourwellbeing in general.
And so if you're dreading goingto therapy every week and you
aren't even keeping up with yourexercises at home so you're not
progressing, then it's okay.
I'm telling you it's okay andI'm telling you you know, bring
it up with your medicalprofessionals, tell them, ask
(07:34):
them.
I'm just gonna go take a breakfor a few weeks and then I'll be
back.
Do you think that's okay?
And see what they have to say?
Maybe there's a serious reasonthat they really don't think you
should, but I believe most ofthem will be okay with it
because they'll understand thatyou know what.
It's okay to take a break rightnow because it's gonna help you
in the end right by gettingthat reset in your brain that's
(07:55):
already injured.
It gives your brain a littlebit of time to heal.
It kind of gives you time torest and kind of reset.
Take a view on what really isaffecting you day to day,
because maybe it's just yourtherapy sessions that are
flaring you up like crazy andnot everything in daily life so
much anymore.
So consider it.
It's not that easy but, if youmay know, sometimes taking a
(08:16):
break is okay, I think.
Sometimes we think it's givingup, like that member that
messaged me saying, like I gavethem permission I was like I
didn't give you permission to doanything.
I just say it's okay to justlive with your illness, live
with it.
Sometimes it's not going awayand I don't want to be the
person that says PCS, postconcussion syndrome, persistent
concussion symptoms.
(08:36):
You know me, call it what youwant.
I'm not saying that it'saffecting you for the rest of
your life, but some people it is.
Some people end up in thebandwagon like I do.
Some of you already know this.
You're four years out, fiveyears out, six years out.
I've talked to people who are20.
They're way into their 50s.
They got injured when they wereyounger.
They've had brain injuries,they have symptoms and of course
(08:59):
, they're less severe, but theystill exist and okay.
So now we have all thesesymptoms.
Great, let's do what we can toget rid of them.
That's what therapies anddoctors and medical
professionals are for.
But what about the rest of yourlife?
Because therapy sessions anddoctor's appointments are only
so much of your day.
So what about the rest of yourlife?
You still want to.
(09:19):
Maybe go get a job, maybe youwant to go to school, maybe you
want to play sports if you cansafely.
Maybe you just want to runaround with your kid.
That's where the living withillness is just as important as
the treating it, because youhave to live with it, because
maybe it's not going away in amonth, maybe it's not going away
in six, maybe you're theunlucky person that's stuck with
(09:41):
things for life.
And I don't want to be negativebecause I'm one of those people
.
I have four chronic illnesses.
That's four.
And yes, my nails, if you're onYouTube right now, have ghosts
on them and pumpkins.
But yeah, four illnesses to men.
And I think if I just focusedon treating them, even though
these ones aren't treatableanymore, I'd be burnt out.
(10:02):
We're living with them.
I do really well and naturally,by living with PCS I found I
improved a lot faster because Iwasn't so focused and so angry
and so bent up about comparingmyself week to week.
I just kind of took time tolive life and I think just by
exposing myself exposure therapyis a huge thing in the
(10:24):
concussion world right now itactually helped me a lot just by
going out, just by doing things, just by taking things and baby
steps, by measuring thingsmyself, seeing how I was doing,
realizing when to take breaks,realizing what was making worse.
So sometimes that's okay and Idon't want to go in circles here
, but I just really want to talkabout, like learning to live
(10:45):
with your illness is somethingthat takes a different mindset,
then you probably will be in.
If you've just started this I'msaying like just started as in
like the first two years, livingwith illness probably isn't on
your list to do because, likeyou know what, keep going, push
as hard as you want to try toget better.
But if you're at those twoyears or more, I'm not saying
(11:08):
give up on therapy, I'm not allthese things.
I've done tons of therapieslater on that have helped me
significantly, especially eyetherapy.
But also learn to live with it.
Don't be so focused on therecovery and be focused on being
able to live with what you'vegot right now, Because then if
things do get better, it justgets easier.
Like if you can live with allof your symptoms, as bad as they
(11:29):
are right now, depending onwhere you're at.
I know many people that arestruggling severely every day
and that's a little different.
But if you're dealing withminor symptoms and I'm not
saying they're minor, but minorcompared to some extreme
situations learn to live withthem.
How can you get through yourday okay without exploding your
brain or being wiped out for aweek or five days after just
(11:52):
doing one thing?
How can you be successful inyour own life in your own way,
whether that's volunteering orjust going for a walk every day
or managing to read a book?
What's important is, what areyou looking for in your life?
And, of course, we have tochange these things and
readdress them.
As someone who's ill, what's onmy goal horizon was not the
(12:13):
same as what my goal horizon wasbefore I was ill, but it's
really important to understandthat these things can change
your life.
So just think about it Now.
Take the time to reflect.
Where am I at in my recovery?
Am I just spiraling in loops?
Has it been years?
Have I ever considered justtaking a break?
Have I ever actually activelythought about how to live with
(12:35):
this versus how to just fight it?
Because fighting it, I can tellyou from experience it's
exhausting.
We can fight it all we want,but we usually lose most days
than not, and that's just.
That's a fact.
So I just, you know.
Wanna throw in one thing Don'tforget to subscribe to the
podcast, like right now, cause Iwill love you forever,
(12:59):
especially if you subscribe onYouTube.
Did you want to createawareness about concussions?
You can check out our entireclothing line through the link
in the episode description or goto our website
postconcussioninkcom and clickawareness merge From t-shirts,
sweaters, tank tops and multipledesigns, including the podcast.
Nothing mild about concussionand more.
(13:21):
Make sure to pause this episoderight now and order yours
before you forget, just like Iwould Welcome back to the post
concussion podcast with myself,Bella Paige.
And so the other thing I want totalk about is how hard it is to
keep up with the daily living,and you might know what I mean,
depending on what you're dealingwith.
And that's like maybe noteating gluten is really good for
(13:45):
you, maybe you've noticed thatit helps all your symptoms and
sometimes you're gonna screw up,but that doesn't mean you don't
know what you're doing.
For example, I have pots andI'm sure lots of you kind of
know a little bit more aboutdysautonomia.
If you don't, we do have anentire podcast on it and it's
just getting.
The research is growing.
I will make sure to haveanother episode on it in the
next few months, cause I thinkthe research has already changed
(14:07):
tons from just last year.
But, for example, I have tothink these really gross salty
drinks every day I actually haveone right here they're
disgusting and that is becausethere's so much salt in it.
I had a few relaxing days forthe first time in a weekend a
few weekends ago.
So I just didn't really bother.
I was like I'm not really doinganything.
What's it gonna hurt?
Oh, it hurt me, that's.
(14:27):
What it hurt Was just a fewdays of not drinking that salt.
I was like tanked, like I couldbarely get out of bed.
The nausea, the spins in themorning, the whoosh of like,
like when you stand up, and likeall the blood drains from your
head, and it's just like thatfeeling was all back and I'm
like, oh, I need to chuck somesalt, take some salt pills,
(14:48):
figure it back out, let my bodyrebalance, rest for the day.
But I didn't get mad at myselfbecause you know what?
I was relaxing for those fewdays and maybe my health was on
the back burner, which I paidfor.
But I didn't get mad at myselffor paying for it.
I just accepted it, which issometimes very hard, depending
on your situation, of course,with work, family and
obligations but just don't beatyourself up.
(15:10):
I think I used to just get somad at myself of why I wasn't
better, or what was I doingwrong?
Or was I not trying hard enoughin therapies?
I wasn't.
Believe me.
I'm telling you, I was ahorrible patient.
Because I was a horriblepatient, I hated all of it.
So the other really thing I wantto talk about today, other than
, you know, learning to livewith this, subscribing to the
(15:30):
podcast on YouTube, becauseyou're my favorite people, and
things like that I also justwant to throw in have you
checked out our clothing yet?
Because Our clothing line isactually great.
You just want to create smallamounts of awareness for
concussions and brain injuries.
It's a really good place tostart.
You can just buy a t-shirt or asweater.
(15:51):
There's tank tops too, and Iabsolutely love mine, and so the
other thing I want to talkabout was actually something
impromptu.
Post-concussion life is tough.
I think it's something that wedon't talk about a lot, because
we talk on the podcast aboutthings like having a hard time,
(16:12):
but we don't always talk abouthow bad that time could be.
And I don't like to get low onthe podcast too much, because
it's supposed to be uplifting,it's supposed to give you ideas,
it's supposed to give you hope,and I want it to do all those
things.
I want it to be a good placefor you to go, but I also want
it to be somewhere that you canrelate to, and that's kind of
(16:37):
what this next part's about andthat's what PCS is actually like
.
I haven't had PCS for a whilebut I have chronic illness and
it's not easy.
I wouldn't say there's anythingeasy about it.
There is benefits, for sure thatI've gotten out of being ill
like all of this Understandingpeople a thousand times more
(16:59):
than I ever would have in thepast.
Like I can call out whensomeone is depressed or
struggling or having issues waybefore anyone else, because I
know all the telltale signs.
I had functional depression alot of the time, so you didn't
really know.
I would walk in and have aconversation with people and
when I turned around there'd betears streaming down my face
(17:22):
because I had such a hard timeactually holding it together
just for that conversation,whether I was in so much pain or
just mentally struggling somuch light sensitivity wasn't
like, oh, the lights were toobright, or were you staring to
the sun and it's like, ah, no,it's like the lights in front of
me right now are too bright andI'm in a dark studio.
(17:43):
Everything was too bright.
The sun outside was too bright,my screen on my phone was too
bright.
People still make fun of mebecause if you actually look at
my phone, it's yellow, because Ifind the blue light is always
annoying on my phone, so it'stinted in night mode 24, seven
around the clock.
You can do that.
I actually have a video on ourhelp series on concussion
(18:04):
connect on how to do that.
If you ever need to, you know,change your phone around.
That's just light sensitivity.
But then what if you added noisesensitivity?
So if you think aboutconcussion symptoms, like layers
it's, you have to remember thatthey're not individual.
You're not dealing with one andnot the other.
So you're dealing with lightsensitivity, everything's really
bright.
Your eyes may be hurt, you knowit's really hard to kind of go
(18:26):
out and function because you'rejust overwhelmed with the light.
But then you add noise.
Okay, so people talking can betoo loud.
Music playing can be too loudsome days.
A horn, a bird, wind doesn'talways matter, sometimes it's
just noise in general, becauseyour ears are really sensitive,
so you add that to your lightsensitivity.
(18:47):
So now you have two things, twosenses, being completely
overloaded.
And if you're like me, I wasactually really sensitive to
scent when my headaches werereally bad.
So I still remember the daydriving to a special medical
clinic.
Actually, my sister put lipchap on and she was in the front
seat.
I was like what is that smell?
Like I like overreacted, but Ididn't at the same time, and
(19:10):
she's and my mom's like she'sreally sensitive to smells and
my sister's like lip chap, she'slike I'm not even near you and
I was like I know, because likeinstantly when I smelled it,
like I had all this pain in mynose.
So I got pain in my eyes, I gotpain in my ears, I got pain in
my nose and then I got aheadache, because most people
have headaches.
If you're wondering why I dotmy eyes, it's because I got
(19:30):
something called an autoimmunecondition, called showgreens.
You won't see this on therecorded podcast, but you will
see it on the YouTube.
But so all those thingsheadaches.
Now you can't think because youhave all these overloaded
sensations.
You can't focus because yourvision is not picking up things
correctly.
So you're adding all theselayers, and all these layers are
(19:53):
overwhelming and then all thetherapies to address them are
really difficult as well,because you know you do one but
it flers up the other, so thenyou feel like it's not worth it,
but you have to keep doing itto get better.
So it's just really importantto understand the multi facets
of concussions and they do saythere's six different pillars of
(20:14):
concussions and all thesethings.
But I find everybody'sexperience is so different.
I don't think anybody fits intoone category.
I think we're multi-dimensional, and so are brain injuries, and
you know, I get that it'sreally tough.
I get that you might bestruggling mentally a lot right
now, and maybe you just foundthe podcast, maybe you've been
(20:36):
listening to it for a while, andI'm sorry if you're struggling
that much, but I can tell youthat things get better.
They get so much better becauseit's kind of a lot better for
me.
Things are doing.
You know, other than what?
I forget to drink salts, go forbaths that are way too hot.
You know there's a list ofthings that I definitely can't
do, that I used to be able to,but I wouldn't say I'm
(20:57):
struggling in life, like I can'tlive a good life, but it's
definitely not the life that youmight expect and that's okay
too.
It's just really important tokind of take a different
approach, maybe with your life,and that might not be so easy,
and so don't be afraid to trynew things.
Don't be afraid that you're ill, because it's not the end of
(21:20):
the world's, but I guarantee ithas felt like that at moments
and I don't deny that, becauseI've felt like that too.
And if you're dealing with likewe talked about the therapies
and you're going and you'redoing so many, that's great, but
you've been doing it for areally long time You're allowed
to take a break and go back.
There's nothing wrong withtaking a break.
Don't be ashamed of taking abreak.
(21:40):
You're not giving up onyourself.
You're just giving yourselfmaybe some time to just Be who
you are a person with illnessand you, there's a lot more to
you than just that.
Took me a long time to realizethat there's so many things to
us and it doesn't have to be onebig thing.
I said show jumping and Ithought that that was my life
(22:00):
and that's who I was.
But I'm so many things.
I'm so many more things than Iever imagined.
Illness kind of makes us feellike the only thing we are is
ill, because it's the only thingwe're doing right now.
But you're so much more thanthat and don't forget it, and I
want to thank you for listeningto today's episode.
It's kind of a little bit, youknow, a little different, but I
(22:23):
just want to talk about a fewthings.
Of course, you can actually sendrequests for specific episodes.
If you're wondering why certainspecialists have come on the
show, it's because people haverequested for a topic that they
specialize in.
So don't be afraid to reach out.
Don't be afraid to reach out inconcussion connect.
I'm usually a thousand timesfaster about answering on there
and I hope to see you on it.
And do not forget to subscribe.
(22:45):
I'm saying that in my veryserious voice.
That actually exists, don'tforget.
I would appreciate it and I'lllove you a bit more for it,
because, honestly, theconcussion community is
incredible.
There's one community that'smore supportive than anything
I've ever been a part of in myentire life.
It's this.
So don't forget to hit thatbutton on whatever service
(23:07):
you're on.
Subscribe today.
Have a good day, need more thanjust 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.
Make sure you take it one dayat a time.
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