Taming The Chronic Illness Monster

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.