This post comes out of the post by Maria of My Life Works Today! titled “Paying Attention To My Lupus Road Signs In January” and the post “We make our own monsters” by Duncan Cross.
In Maria’s
post, she talks about the sun’s impact on her lupus and how she has to listen
to her body and take the sun in gradually.
Duncan’s post talks about some of the social and environmental factors
that may have contributed to his IBD.
I’m not
really doing justice here to either of these two posts. They were definitely thought provoking for me
in thinking about my own illness experience.
And that’s what I want to share here.
I have
been under a lot of stress lately. It’s
crazy when you are trying to finish writing your dissertation and solidifying
plans for the future. And in all this
craziness, it takes me back to when I was writing my senior honors thesis at
the end of my senior year of undergrad.
And I’m
hit with the reality that my body is not going to be able to do the things it
did then. That was six years ago, but it
feels like it is light years away. I’m
not the same person I was then, for a lot of reasons, but mainly because I
wasn’t sick, or at least I didn’t realize it at the time (more about that later
in this post).
The
reality is, I cannot do what I did when I was writing my thesis. I can’t stay up until 3 a.m. working. As much as that was unsustainable then, it’s
even more unsustainable now. To the
point where it can’t be done. Or I won’t
be able to function. Really.
The truth
of the situation back then was that I was sick but didn’t know it yet. I didn’t do a very good job of listening to
my body.
I’ve told
this story a lot, but I’m going to tell it again. During my senior year of undergrad, I had strep
throat several times, pink eye several times, and several yeast infections. We’re talking not a normal amount for someone
at that age. But it didn’t raise any red
flags. I got antibiotics each time and
those ailments would go away, although only temporarily.
There were
some other things that happened at the time, that I didn’t talk about then, and
are hard for me to talk about now, because they make me feel like an idiot,
like I should have known that something wasn’t right with my body, but I didn’t
pay attention.
Like
everything else, I attributed it to the stress of finishing college, applying
to graduate school, and writing a thesis.
At some
point, I noticed that when I sat with my knees up for a significant length of
time, they would lock, and it would be extremely hard and painful for me to unbend
or fully extend them. I also woke up one
day and I couldn’t think. Like I tried
to read e-mails and I couldn’t comprehend what I was reading. And I put on the TV, but it sounded like the
people were speaking a foreign language.
I know, it sounds crazy. And at the
time, it did scare the shit out of me.
But I didn’t do anything about it because I didn’t know how to talk
about it. Since it only happened one
time and never happened again, I thought it was a fluke. Like I said before, I thought it was just
stress.
But to
anybody who knows anything about the immune system, this probably all spells
trouble, and a lot of it.
But things
are different now than they were then.
Then, all I cared about was school.
I felt invincible. Now, my
priorities have changed. There are other
things in my life, other people.
It’s hard
to look back at what you thought was the calm before the storm, only to realize
that the storm was already brewing, it just hadn’t made landfall yet.
But I
can’t live forever wondering why this happened to me. Or what caused it. Or if I could have stopped it.
I don’t
know what the trigger was, and I’ll probably never know. But there was the crazy episode of vertigo I
had, which I think was a precursor symptom.
That should have been the red flag, but even that wasn’t. Because all of these things weren’t happening
at the same time.
I agree
with Duncan that so often we are blamed for our own illnesses, and it shouldn’t
be that way. Something set these events
into motion, whether they happened while I was young or only more recently, it
doesn’t really matter.
Those who
forget the past are doomed to repeat it.
I can’t
change the past. I can’t make red flags
out of disparate occurrences.
I missed
signs then. How do I make sure that I don’t
miss them now?
I don’t
want to be hyper-vigilant. And since
I’ve been off of immune-suppressing drugs for a little while now, I don’t have
to be quite as crazed as I was before.
But I also don’t want to miss warning signs.
I think
for most of us, the primacy of illness in our lives ebbs and flows. For me, right now, the key is finishing my
dissertation, and this seems to be coming before my health. What I mean to say is that I’ve been feeling
okay lately, relatively speaking. But I wonder
how much or how little of a place I feel illness has right now is simply in my
head. It hasn’t really changed, it’s
just that my priorities have.
But this
worries me. As I suggested above, when I
was writing my thesis at the end of undergrad, everything was put aside in
favor of that project. And in the end,
it is probably one of the things that brought out my illnesses. Although the reality is that I was sick
before that point and just didn’t know it.
So how do
you find balance in a life that is filled, not only with illness, but serious
duties and commitments?
For me, it’s
managing stress. My stress level has
been pretty high lately and my mood pretty low, so I need to work on decreasing
the former and increasing the latter. And
the bottom line is, these are things I can control. I can’t control my illnesses, but I can
control my attitude.
So the
moral of the story is to listen to our bodies, to pay attention to the
signs. The other moral of the story is
that these illnesses are spurred by something in our environment, although we
may never be able to figure out exactly what it was that these events into
motion.
I’m trying
to find balance as I push through one of the most difficult experiences of my
life. Writing a dissertation is hard
work, and writing a dissertation while working within the constraints of multiple
chronic illnesses is even harder.
But in
some ways, maybe these self-imposed/illness-imposed restraints will actually be
really helpful. Maybe that’s the lesson
here. In the past, I have done a sucky
job of listening to my body, and it literally led to my undoing. Now, when my body speaks, it also forces me
to listen. I wish that lesson could have
been learned some other way, but I’m not sure I ever really would have gotten
it unless my body hadn’t said STOP! This
is too much.
I’m truly grateful
for the opportunities I’ve been given, and I’m trying to finish my PhD strong. I know I can do it. I just have to be patient with my body and
respect its limits. If I can do that, I’ll
be the one to reap the reward in the end.