I don't even know say so hi and welcome to my video this is so awkward
such cringe moments right now I wrote down things well actually I type things
because that's what my handwriting looks like and ain't nobody gotta be able to
read that I can barely read it decided that I like filming in my room more than
I like filming in the kitchen because I put up the shape because our kitchen is
giant mess so is this awkward or not this is a pile of blankets that I
covered in another blanket to make it look smooth talking alive it's a little
bit Mike writes about life because there are things that people say and things
that people do that just drive me insane
today I've decided to film a video of 10 things I wish people understood about
chronic illness I've written them down one piece of paper said I didn't have to
come up with them on the slide and I could remember there are 10 things that
I should share with people that I wish people understood because people have
good intentions at least I'd like to think that they do and some things that
people say just aren't really helping the situation so you don't in any order
first telling me things could be worse is not helping the situation because
likely we are well aware of the fact that they could be worse
but what the what that perspective of things could be worse or also things
could be better but having the perspective things could be worse
doesn't mean that the situation right now doesn't suck so like it was really
sack of things were worse but in the moment that doesn't bring that doesn't
like stammered a on the feelings I've right now really sucks so
there's my feelings on telling somebody well it could be worse or while at least
it's not actually to add on to that also telling a person well at least it's not
fill in the blank here like cancer or at least it's not terminal doesn't really
help because this is a really screwed up thought that I had but I was thinking
about this the other day and I was like I'm not gonna voice this opinion to the
world I was thinking like chronic illness and cancer like things that are
kind of the same and then things that are like why deferent and a little bit
of my heart I was like wouldn't it be easier to have cancer which is really
screwed up but I don't I'm not gonna like put all that in this video and be
like you can make a video about that or just keep those thoughts in here let me
know if you want to know so then the second thing that I wrote down was
telling me to pray or that you will pray for me is nice and all like actually
telling me that you will pray for me is nice and all but telling me to pray is
it's also kind of nice but it's not something that I want to hear because
don't you think I've tried or don't you think I do and then being like well if
you prayed more no no no no because this is kind of a separate topic again but
I'm not an overly religious person anymore because I know under the same
thing I didn't put ever think that everything happens for a reason and it's
some separate thing because people also along with that oh you should pray more
everything happens for a reason or another whether it's like
god only gives you what you can handle those statements make me so mad because
that's it's saying that would imply that God or yeah that God like put these
illnesses or gave these offices I wouldn't think that he would make a
person's life so hard although I don't know like I'm I think I'm just an egg
valve because all these statements that could be really triggering tell him you
to pray everything happens for a reason
God only gives you a jerk handle these statements just oh I get so mad
something that I wish people under which knew or like understood is that looking
fine does not mean I am fine so people are always like oh you look so good or
oh you look like you're feeling better if they're I'm always in pain like pain
and Ellen are like one in the same and so telling me that I look better or
telling you that it looks so good or that I like just a little piece of you
like breaks side because you're like like I'm so happy that I look great but
I don't want to like impose all my problems on you by the same time I want
you to know like that's not the case like just telling you that it looks so
good and stuff it's like oh and then you feel like you have to prove that you're
are thinking that I don't know like these thoughts just it's just I don't
like if there was a Grammy for pretending to be fine people with
chronic illness but get this Grammy like day in and day out
great now I'm feeling okay but it's also kind of early in the day and not right
after I woke up so there's a short span of time in the
day where I can like function like human and be fine
but if if any of these topics don't make any sense that I'm trying to portray let
me know and I'll try to clarify in another video or in a vlog or something
okay this is probably my biggest one because it makes me so confused
so my illness is not just going to get better so telling me take gal well soon
or I hope you feel better or oh you're still sick sake saying things like that
or I don't know like those kinds of thing I'm always confused like what do I
say back to that like I usually just say thanks or you to wait then they're
confused too because then we're just in a mutual confusion like I understand
that that is said with like the best intentions but I almost prefer for
someone to say that they would pray for me even though that one come in like
takes me to over saying like get well soon or I hope you feel better soon or
something I guess I hope you feel better is better than I hope you get better
because the way you feel contain from moment to moment but that action or the
like bubble of being sick I'm I'm most likely although I still sometimes help
for it I'm not going to just wake up one day better or I'm not going to most
likely unlike something that we have not thought of my doctors not thought of
like comes out of the woodwork I'm not going to go to the hospital
and be like well this is what's wrong with me and then they're gonna say well
this will make you back to normal like that's not going to happen
so like thing to get better or J get well soon that just kind of like hurts
heart because it's kind of just a little reminder a constant little reminder when
people say that like that's not gonna happen
that's or that's not likely to happen I don't get mad at my family when they
write grandparents and they say it but like my cousins stuff I I'm like same
thing with my friends alike that's when I say you too and they're like what are
you talking about YouTube yeah because like that's just my life like the way
that I'm living is just my lot like the life that I was given just like the life
that you are given is not the life that I'm living the same thing with um like
I'm just thinking of this one now but like when people say I don't know how
you do it or I wouldn't be able to handle that it's not like I chose to
like this like I wasn't given a choice and if you weren't if you were given
this life you wouldn't have been given a choice either and so you would just have
to live with and like some days that is hard but like telling somebody like I
don't know how you do it or I wouldn't be able to handle that that's just like
like telling them like oh you're so strong or something is a lot more less
putting a little like they get the way of their life it and it's more like
commenting on them as a person saying that they're so strong or something
rather than being like oh your life sucks this kind of goes along with that
but this is like my fifth thing that I wrote down which is there is no
medication that will make it better so like for my nd pH there's not something
that I can take to make the headache better to make the headache go away it's
been almost two years or something living with a constant headache like a
constant the way it's described it's like a
migraine that never goes away that's not the way I described it that's the way
that like my doctors described it to me it is like how did like when they were
diagnosing they're like yeah that's basically what this is and so there's
not something that's just going to make everything better you know there are
things I can take for like the symptoms of things so it's a whole like symptom
management thing and what are we like symptom management is great no but for
the most part it's just symptom management means like good luck and
hopefully you can figure out things to help yourself out because we don't
really know what to do that's that at least that's how it's
been in my experience that like because there's nothing that's gonna take away
the pain or anything so example I was in terrible pain one day and so we went to
local ER actually been to mo multiple local yars for this and to hear about
the pain and everything so then I get a cat scan ultrasound MRI whatever kind of
scan they feel like doing that day and then an IV and IV narcotics like right
away and for me most of the time that doesn't take away the pain so like last
time we went into the ER I just when they
were like do you want something pain I was like no and then they'd ask again no
and I was just like crying crying crying I wasn't there for the pain no so I was
just like crying crying and crying and they're like are you sure enough like no
I do not want anything because the IV narcotics they just make me sick they
put me on so much one time I could barely keep my head up like I was
surprised I was still breathing so there's nothing that's just gonna make
it better six-six it's extremely difficult to
describe what it's like to be in my body some people say how are you or things
like that like or how are you feeling in society people don't want to know so
you just say good but when people who you know actually want to know it's hard
to explain sometimes you even then just say good even when you feel like you
could rather just be like a zombie or something but it's hard it's extremely
difficult to describe what it feels like the best way I can describe it is like
that pain scale thing everybody's an awesome at a doctor's office like though
one to ten or zero to ten thing when they ask that in like a particular part
of my body today is an average this moment in this very second in time today
this week yesterday a particular body part but there there's not an easy way
to explain what it feels like and so pretty much just end up feeling like
really confused and like torn inside the seven thing that I wrote in is grief
over who I used to be I wish people understood that for the people around me
this isn't like a major me becoming sick or becoming sick isn't a for them it
wasn't a loss of like having someone died which was taken a little bit far
but for me I had hopes and dreams for that me for like the health the healthy
me I had hopes and dreams I had friends I had everything like that I could think
of that I wanted and then it all got taken away with my illness so her asthma
then somebody died is like all those things that you had wanted and all the
things that you had known are pretty much gone and you're living in a new a
different body that a different body that isn't able to do all those things
and so it does take time and from time to time I get really sad and depressed
about it because you still have you still have those memories and everything
and it's it's never gonna be so there's that eight they think chronic fatigue is
not the same thing as being too I feel like like when I sleep sometimes
I get more tired when I sleep and so it feels like you're running on a battery
that's never fully charged it never will be you're just always tired like
mentally exhausted and physically and emotionally exhausted but you can't fall
asleep most the time it won't help to sleep forever because you're just so
exhausted that that doesn't really like recharge yourself as so you're just
constantly like charging a little bit charging a little bit charging a little
bit like trying to get along but going to sleep isn't going to help so and then
you in so much pain most time you can't sleep anyway so when people are like oh
oh nice like oh I'm so tired they're like same and like it's not because I
stayed up all night is I'm just tired because I woke up today 9:00 9:00 people
always say like Oh ending with the darks are like jump can't they help you and
everything the doctors for the most part don't understand so I have one or two
maybe three doctors yeah I think I had like three doctors that like really
actively trying to help me and they like try to understand the best they can but
the sense it's hard to explain like it since it's hard to like verbalize and
come up with the words to of how it feels there's no way the doctors are
gonna be able to understand what it feels like and what like I need from
them when I can't explain I can't explain it to myself I can't explain to
my parents obviously I can't explain it to the doctors so they don't like people
are always like oh well the doctors will be able to help you they medicines can't
always fix the problem and then the doctors don't understand like the things
that you are able to say sometimes they don't understand what you're trying to
say I don't really know how to Blayne that Billy trying to get the
people out there will understand like if they don't they try
most of them try their very best to like help and be understanding and happy
everything but the like they just can't understand what it fully feels camera
ran out of battery so now is after PT yeah lighting is much different because
Sun isn't coming through the window anymore and I'm really tired but I got 9
out of 10 done so I'm not gonna reshoot the whole thing I'm just gonna film this
last them the tape thing that I mean I can't speak for everybody but I'm pretty
sure most people with chronic illness like fear or yeah pretty much fear
letting everybody down because you always have to like cancel plans or you
fear letting people down because not expressing like the right emotion
because in a situation I may like mentally want to be there but physically
my body's like an opera and so emotionally it looks like I'm just like
gone like the pain is too high or something and seven everybody is like
hey at the party and I'm like I'm enjoying being there it's just looks
like I'm so bored I cannot eat I think that concludes my 10 things I wish
people understood about chronic illness yeah I pretty sure that concludes it so
thanks for watching and I'll see you
actually I'm gonna be filming another video probably like 10 minutes but I'll
see you next time bye
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