This last week I couldn’t count the number of times I’ve
heard another student say “I’m exhausted and/or stressed,” through out the
first week of college. Now I’m sure they where indeed one or both of those
things, but there is a different definition for both of those if you happen to
be both a freshman in college and a young adult with a chronic illness.
When you
add having a chronic illness to the stress and life of being a new college
student there are a million things, I didn’t even think about having issues
with until they happened, others I completely underestimated the magnitude of
the issue.
How about
we start with something that sounds simple, getting to class. Now, I’m not
fully sure how large campus is at Purdue, but it is a decent size. So, when you
have a chronic illness that makes all of your joints hurt from time to time
that makes walking from one side of campus to the other feel more like walking
from anywhere to the moon. I mean there is one time where I’m pretty sure I
could get the the moon quicker, but anyways there have been a few suggestions
to how to help with my severe pain and fatigue with walking around, including
using campus buses and my wheelchair, but let me explain my idea behind going
everywhere on foot. It comes from a very dedicated soccer coach of mine when we
would start practices at the beginning of summer not being in shape, he would
work us to death on Monday practice, and when Tuesday rolled around we where
all sore, tired, and complaining and what did he do? Worked us harder. There
was no quitting. Ever. And honestly it worked. The harder we worked and the
more we worked through the pain, the quicker we got into shape and where conditioned
to his work outs. So if that worked then, ideally it should work the same way
now, as the doctors tell me the more I do the better I will feel, and so I push
on through the pain, refusing to give in to the pain and fatigue. Yes, most
days by 4:15 when I get to walk home to my dorm, I swear the world is going to
fall in and I’m going to die, but if I keep it up soon it should start to get
better. Should being a key word here.
Next thing
you wouldn’t think about being an issue is just outright getting things
communicated to the correct people here on campus. I can’t count the number of
times a teacher, RA, or other college staff has told me they don’t know what
exactly to do with the situation I’ve been told to explain to them and therefore
they needed to go and talk to their boss or the head of this part of campus or
that part and then meet with me again. So, this week I’ve spent almost as much
time in someone’s office trying to sort things out as I have in classes, and I
am still not done sorting things out. I’m still sitting with stupid problems, that
I have to somehow figure out how to fix, while being sent from office to office
on what seems to be a while goose chase.
Something
else that goes with moving to college, is me needing to take over a lot of my
healthcare needs. I’ve argued with IU nursing on supplies for my port, been
driven home a few times to get fluids, called doctors offices trying to get
them to understand what’s going on, and sent my mom on mission to call supply
companies and who know who else to get things sorted out. So I am now in charge
of things that I wasn’t before, the main thing being running IV fluids through
my port. This means I have been in training learning how to access, flush,
dress, lock, and deaccess my port. Not to mention learning how to hang IV
fluids, run the pump that goes with that, and twice a week wake up at some
crazy hour of the night, to switch from one bag of saline to the other, as they
can’t put them together or they would need refrigerated and I can only have so
big of a fridge in my dorm. Let’s just say tonight is the first time I will
actually be accessing my port myself, this involves putting an inch-long needle
into my upper chest, and at least I have a good nurse coming because it might
get interesting.
Finally,
one thing I didn’t’ think about happening when on campus is me getting really
sick. I didn’t think I did this all the often but since I’ve been here for two
weeks, orientation and the first week of class, I’ve been sicker than I
remember being, and at home there is always someone checking on me but here
everyone has made it clear nobody will notice or be able to check in. So it’s
kind of scary knowing I could pass out here and nobody notice. Or it’s odd not
having someone checking on me when I sleep for 14 hours straight when I don’t
feel well. I also seem to have become “allergic” to my formula over the past
weeks. If I run it through my feeding tube it makes me throw up, if I stop it I
don’t. If I just run water I’m not getting sick. If I dilute the formula it
makes me sick, if I slow the rate down same, I’ve even opened cases of formula
with different expiration dates. Nothing helps, and to make it better my GI
nurse didn’t trust my judgment and ended up making me sicker over this weekend
rather than helping. So now I am waiting out the weekend in order
to call them back.
Overall, I
love it here at Purdue, but my illness makes it a ton harder. There have been
many days in the last week that all I have wanted to do was give up. Where I
haven’t wanted to leave my room and head to class, but I have. Somehow I survived
my first week of college, even if I have broken my rules of being here including
not texting home so much and no visits from home for the first month, but in
the end I think it is better wading into college in my situation rather than
jumping directly off into the deep end. There will be bad days, more right now
than normal, but if at the end of the day I can get up the next day and keep
going there isn’t anything that will stop me. I just have to keep in mind it’s
going to get bad, but there is light on the other side and support all around
me.
