Hello, my fellow Internetians.
Welcome to a video that probably should be scripted but I... am not doing that.
I am going to talk about invisible pain and much like pain can just come upon you, the
idea to make this video kind of just overwhelmed me.
So, here we are.
I'm going to start by taking my pulse for you which seems a bit odd that I have pulse-ox.
So, I'm going to put it on my finger- you saw it in a few of my vlogmas videos.
Vlogmas is over.
It is officially January.
I am recording this on January the 2nd.
I am not sure when it is actually going to go up and I said before that I wanted to make
a video about chronic pain.
Instead, I'm going to talk about invisible pain because types of chronic pain are invisible.
My pulse is currently 115, 119, 120, 123... so clearly I am nervous to make this.
And if you don't believe me, I will put this right here for you to see.
Maybe... maybe not, it doesn't like you.
There we go!
133, that's what I'm talking about.
Now I have to try and, yep.
Oh, now it's 140, that's lovely.
So, I am very nervous to make this.
I feel like this needs to be said and it needs to be validated.
For the longest time...
No, no, no, no, no, we're not even gonna say for the longest time.
Yesterday, on New Year's Day, at 4:00pm I went to the emergency room because I had very,
very, very bad stomach pain.
I suffer from something called gastroparesis.
Okay, there are fewer than 200,000 cases in the US per year.
And it can be treated but it can't be cured and basically it means that I have slow gut
motility.
So, I have a medication that I take four times a day, every single day, for three weeks and
then it's off for one week and then it recycles.
But I was in the ER yesterday because I had really bad stomach pain to the point where
I was laying on the ground in the bathroom crying and asking my mom for help.
I do not like asking people for help.
I do not like crying.
I was in the car with my friend, Jonathan, coming back from New York and we had just
visited my internet friend, CW, and- she's not even my internet friend, she's just my
friend.
And we were talking about books and movies and songs and I told him that none of them
had ever made me cry before.
The only thing that really makes me cry is pain and pain is invisible.
It really is.
You relate to pain, you relate your level of pain through metaphors.
It can't actually be gauged- at least I don't' think it can.
We were sitting in the waiting room of the emergency room and my mom asked me as we were
sitting there what my pain was on a scale of 1-10- as I had been in the bathroom crying-
and I told her it was an 8.
And she told me that the pain didn't look like an 8.
But pain is invisible and everybody has a different scale.
I have a migraine medication that I can take which is basically hospital grade medication
when my migraine is 3 days long and I would go to the hospital but I have medication I
can take so I don't have to.
And I rate those as 8's.
I guess 8's are kind of the highest I'm willing to go because I think of personal losses such
as grief from deaths higher than physical pain.
But physical pain is just as real.
And maybe I've been using the wrong scale.
And everybody has their own scale.
You can't tell somebody that they're not in pain.
Pain is different for everyone.
Some people have chronic pain and chronic pain is different for everyone too.
I have gastroparesis which is a chronic condition.
I have eosinophilic esophagitis which is a chronic condition.
When you're in the midst of a flare up, on those days when I have really bad migraines
and crippling stomach pain and I'm laying on the floor wondering why?
Why is this pain chronic?
Why is there nothing anyone can do about it?
I turn away from people; I push them away when I'm in pain because I tell them there
is nothing they can do about it- but there is nothing I can do about it either.
I shouldn't make myself more miserable by pushing them away, but I don't want to make
them feel bad because that causes me pain.
I don't want them to feel bad that I'm in pain because the fact that I'm in pain has
nothing to do with them.
I'm in pain because I have these chronic conditions that I can't change... but I can change how
I act about them.
I can accept people.
The medication might not always work, but friends are still there.
Like yesterday, Amy started sending me pictures of her cats when I was in the ER.
Last fall, I went to the emergency room for my stomach pain and Jenna, Nicole, and Kat,
who had been my roommate at the time, stayed up with me until 2:00am when my parents could
get to school.
And we were watching The Amazing Tour is Not on Fire and the documentary and they were
sending me pictures of goats and they were trying to make me laugh and feel better even
though I was in such pain.
I can be an advocate.
I don't know how to be an advocate, but I can be.
When I'm laying on the floor and I'm in such pain and pushing people away and I'm wondering
why it's all happening to me, this is why.
I don't know how to be an advocate I really don't.
I'm 19 years old, I'm trying to make my way through school, I'm fighting to stay in school
right now because my school doesn't really want me there.
But there is a reason this is happening.
And the reason is so that I can talk about it, maybe?
So that I can tell others about it?
So that I can speak for invisible pain and invisible illnesses that can't speak for themselves.
I don't really know.
I haven't washed my hair in two days, my face is breaking out, my head hurts, I had a ruptured
ovarian cyst yesterday which is why that pain had been so terrible.
I have multiple doctor's appointments a week, I'm trying to be at school and study 16-18
credits at a time while also producing a campus version of Survivor, go to physical therapy
for my hip- I'm literally loading myself up so much because I just try to keep going.
That's the only way I know how to keep going.
But I realize I have- sometimes I have to slow down.
You have to embrace the pain and you have to speak out about it.
You have to tell others when you're hurting be it emotionally or physically or however
you hurt because while it can be difficult to make the pain itself stop, and sometimes
you can't get the pain to stop, you can be with people who care about you.
This wasn't my intended first video of the year.
I suppose it's a good thing, this is me telling myself that in 2018 I want to be an advocate.
I suppose that's it.
I have a new end-screen that will come on after I finish talking.
Thank you to Amy for that and my header and my new watermark.
The next video, fingers crossed, shall be me, CW, and Jonathan when we went to New York.
It was supposed to be my last 2017 video, but then I was having computer issues and
I had to wipe the entire hard drive and reinstall programs and whatnot...
Anyway, if you enjoyed this video, please give it a thumbs up.
This year I am going to try to talk out more about migraines, about stomach pain, about
rare diseases, about common diseases, about mental health.
I want to be an advocate.
I want to speak for the things that aren't spoken about or that are spoken about.
This is me saying I'm not going to be quiet.
I am not going to just sit in pain and deal with it because I am in pain for a reason
and I think that reason is to tell others that they are not alone.
So even though they might not be ready to speak out, I am.
So, if you liked this video, please give it a thumbs up.
Share it with people, subscribe to my channel so that you can see more, and as always, thanks
for watching!
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