How to Treat a Housefire

Most of you know by this point that my filter is pretty thin in some aspects--we'll be hitting the ground running on this one.  So, I had a bladder infection recently.  I'd had the symptoms--painful urination, increase in frequency/urges, cloudiness, discoloration (brown means blood sometimes, folks), sharp odor--for almost a week before doing anything about it.  On the one hand, I'm a little mad at myself.  I knew what the problem was and after one, quick lab test, I could be on my way to feeling better.  On the other hand--and this will sound dumb and understandable at the same time--I had other things to do.

 The thing is, I've definitely had a few of these last year.  And I recognized the signs and symptoms then, too.  This wasn't a new discovery, understanding what these symptoms probably meant.  Didn't do anything about them at the time because, well, there were bigger problems at hand.  I went to my primary care physician for the first time in, gosh, I'm not sure how long.  At least five years.  I go to the doctor a lot, but it's always a specialist.  My GP sees a lot of paperwork from me, since I send a copy of my lab reports and all else their direction, but they don't ever really talk to me.  I have on a few occasions held this as an odd point of pride. 

Stay healthy, my friends

And it is occurring to me now that this might be, at least in part, due to some really skewed perspective.  My basis of comparison is pretty messed up. 

When you're treating the equivalent of a housefire, who cares if the sink is overflowing?  A broken closet door isn't nearly as important as a hole in the roof.  Hell, a fire in the bedroom is more important than a flaming, isolated garbage can.  For a long time, now, my body has been that housefire.  A lot of little things just were not as important as salvaging the structural integrity of the metaphorical house. 

In other words, I'm realizing that I didn't go to my GP not because I was never sick but because I had bigger problems that needed different care.  I would still argue, at least, that I was seldom the kind of sick that required my primary care physician, but I can think of at least three more bladder infections (bearing in mind where those fistulas were located and subsequent increase in regional bacteria) that I waited out, drinking as much water as I could and monitoring if it seemed like it was moving to my kidneys.  I was constantly in pain from my rectum--what was a little occasional, minor pain from my urethra?  A new fistula was breaking through my skin--that cavity in my molar was going to have to wait.  I only had so much time and emotional energy to treat the big problems.

What this means is that, weirdly enough, treating bladder infection is a sign that things are going well.  And the fillings that I had the week prior.  And the check-up appointment I have for where one of the fistula sites is still oozing a bit.   I'm feeling an odd mix of overwhelmed/annoyed at having to now attend to these "minor" issues while also relieved that I have the freedom to treat that part of my holistic health, too.  So, it really does seem like things are starting to calm down, relatively speaking.  

This prioritizing has been, and continues to be, a difficult thing to manage.  Symptom triage is a tricky beast.  My experience with Crohn's Disease has never been one problem, a single symptom.  There are always many little things along with it.  And now the rules are changing on me again.

And I've had my doubts in my ability to triage wisely as we've gone along:  I remember waking up from the exam/seton drain placement last summer, where there were many things to think about.  I was trying to pursue all angles of thought while simultaneously refusing to live in a world of "what-ifs" because there always could have been something else, and the choices that I make regarding my health are the best that we could have made based on the information that we knew at the time.  All other components fall under "It just is." Guilt for not acting sooner.  Action vs inaction.  Worry that I hadn't made the right decision.  All in one keenly remembered in an isolated moment, summed up in the reverberating thought "What have I done?"

And as always some decisions are harder than others.  Apart from the fistulas, rectal symptoms, isolated infections, etc., I still need to manage other systems--dental and chiropractor for example--as well as those day-to-day life balances.  Going to the gym or resting?  Eating well or conserving the energy by eating what's available or eating what's emotionally beneficial?  When it's better to save the energy of going out or when I need the spiritual/emotional recharge of being with friends?  I'm not actively dying so can I call off work for this particular barrage of symptoms?  Can I even touch the subject of preventative care in this arena?  

One fire at a time, adding in new pieces as I can stomach them but still a constant push toward betterment.  Talking to those that understand.  Educating those that don't.  Still kicking.  Still balancing the best I can.   

And then something clicked:  I'm still in survival mode.  I thought I was done with it.  But I've been in it for so long that I don't really know what to do out of it.  It's a huge paradigm shift.  I don't know how else to be.  It's not EVERYTHING IS ON FIRE survival mode, but it's still a state of heightened awareness and subsequent anxiety, holding the metaphorical fire extinguisher and frantically pointing it at flickering shadows as I expect the carpet to erupt in flames at any moment.  It's hard to pick up the hammer to fix that closet door or a wrench to fix the overflowing sink when I'm still clinging to the fire extinguisher.  I'm nearly afraid to focus on one aspect too long, that I might fail to check a closet and miss something important.  

I don't know how to turn it off.  

I can see glimpses now, where I can sit on my metaphorical couch and watch TV for a little while, but then I look up and see a project that I hadn't been able to get around to yet.  There's an element of my Self that identifies as the tenacity I have in fighting for myself, if that makes sense.  I'll try again:  part of how I define "Me" is in how I fight this disease, the grit I have in bettering my condition.  It's not Melvin or my disease or being differently-abled that defines me, but how I have chosen to react to it is decidedly an important part of who I am.  I read an article recently that argued that person-first language (i.e. "person with disabilities" as opposed to "disabled person") is inherently problematic in the implication that a "person" is therefore assumed to be able-bodied.  The part that really stuck out to me, though, was the final paragraph--I feel this captures the same sense of what I'm trying to say, that I don't want to be seen without Crohn's because it has, in a sense, made me who I am and all the more deeply human, not human in spite of it.  So, being in this constant battle has become a part of my own identity.

My therapist and I have been talking about a specific symptom of my survival mode on and off for a while now:  I view my body with contempt but I also have separated my body from my sense of Self.  I could not say when this happened, but it makes a certain kind of sense:  I could hate that part, be safely angry at that part of me if I distanced it from Me.  It kept my Emotional Me safe but ultimately has bottled away a lot of latent anger.  This in inherent even in the ways I talk about my body to myself.  "How are you failing me today?"  "**Complex string of expletives**" "Really?  You have to shut down now?"  "I have to fit in another doctor's visit?  Could you...not?"  I love parts of my body; I appreciate how parts of it move and can feel confident in how parts of it look.  It makes complete sense to me how we got here, but this separation is not a good long-term solution.  I need to learn how to embrace all of Me, even the crumbling bits, to respond to my own body needs with compassion instead of frustration and anger. 

There's just a lot of conditioning in the way, yet.  Years of it.  Complete paradigm shifts and retraining.