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coping with pain

The After Burn

*Disclaimer:  Adult content and language.*

I think perhaps sometimes I share too much of the good.  Always push forward.  Always look for the light and fight your way there.  Fake it until you make it is something I have been doing since I was a pre teen.  As a person with Crohn’s Disease I find strength and comfort living in a way that negatively impacts my family, especially my children, as little as possible.  I feel powerful when I am able to make my life look effortless to everyone else.

parentingUnfortunately, my positive sharing has led others to believe my experience has been the Holy Grail of easy.  Well guess what, sometimes I go through things I don’t fully understand at the time.  Sometimes it takes a while to process my junk before I feel like sharing.  And sometimes my junk is so heavy and ugly that sharing feels like an unfair burden to put out into the world.

However, today I wanted to share with you about pain.  Not the normal pain ER docs see as drug seeking.  Or chronic pain we live with to the point where we’re really never sure where we fit on the 1 to 10 pain scale.  I’m talking about what happens when pain goes sideways and becomes something else entirely.

So I have my Permanent Ostomy Surgery  and everything goes swimmingly.  I’ve written about that before. (It’s really long)  Just days after procedure I’m home, home schooling my daughter, and loving on my wee son.  Life was on track.  I was walking around normal and physically better than expected, but a part of me was emotionally numb.  It was like stepping into a life that wasn’t mine.  Everyone else was the same but I no longer fit.  I felt foreign in my own life.  Impostor.  At the time I attributed it to this huge change I had undergone.  I gave myself slack and forgiveness for the learning curve I was going through.  I was being very understanding towards myself.  But still, I felt like I got off too easy.  I was getting away with something.

Being pain free after all those years, and surviving a near death overdose in the hospital was like finally being allowed to remove your hand from the flame.  It’s that immediate, jarring, lack of sensation.  I had been living pain for so long that its absence felt foreign and far too quiet.  I wasn’t giving myself constant pep talks of ‘breathe through it, it will pass, push through, you can do it’, because I didn’t need to.  In an odd way my inner compass felt too still.  I felt far too vacant inside without the pain I had grown accustomed to.  I didn’t know I had made friends with agony until it was no longer there.

Logically I knew that everything was the way it was supposed to be.  Still, I felt on guard and uneasy.  I realized I had never really been able to rest.  As in sit in a place, pain free, and really enjoy my surroundings.  And sleep.  God!  Sleep on a level I had not experienced in years.  I could actually sleep and wake rested.  But the peace and rest I craved so much at first felt unexpected.  I would wake up and be surprised at the length of time I had been out.  Defensive and wary.  Are you sure?  That many HOURS?!  It was an odd mix of disorienting lost time and surprise that I was actually able to do it.  I could sleep through the night.  And at the time that didn’t feel right at all.  This sleeping, pain free, resting thing.  I had been away from it for too long.

And if that wasn’t screwy enough, one day I was changing my gear, felt the sting of the Ostomy paste with its rush of pain…. and warmth.  Comfort.  Which was disorienting in that it was a magical mix of hurt like crazy and strangely soothing.  It was dizzying euphoria and fear.  Which threw me.  What the Hell was that?!!  I was the stranger looking back in the mirror, wild eyed and confused.  For a moment the hollow feeling was gone.  Oh Shit!  This is NOT right.

Much to my horror and curiosity I was bent by pain in a way I did not understand.  Pain felt good.  Really Good.  Like that loose body feeling after a massage.  I was no longer waiting for Crohn’s pain to come to endure against.  It was there in another form, and it had missed me.  And I felt Right for a moment because this is what I had needed and didn’t even know it.  The combination of this mis matched pair of experiences was unsettling.  It’s not supposed to work like this. I felt like a monster.  Well Shit!

It wasn’t physical health at all.  Physically I was doing better than my highest expectations.  Instead it was a slippery little thing that snuck in between the cracks and ambushed me when I least expected.  I didn’t know what this was called.  I had never heard of it before and I sure as hell wasn’t going to tell anyone about it.

painFrom danger to peace with no transition.  Emotionally like being forcefully thrown from the top of a building to the city below.  It wasn’t a purposeful choice; I was overtaken by it.  And incredibly ashamed for that weakness.

In my life I have been physically hurt in many ways.  Never was it comforting.  This new development freaked my frick out.  My job in life until then was to battle against pain, not secretly acknowledge it as relief.

I knew no way to help myself but to keep going.  In the opposite direction.  I poured myself into my life.  I overemphasized the things I knew in my mind were normal and good.  I focused on my family and parented the hell out of my children.  It felt like I was apologizing all the time.  I stayed away from pain and hated myself when it itched against the back of my brain.  It was a hard crawl.  I felt like an ass.  I felt betrayed by my own body again.  Was I a pain junkie?  Is that even a thing?  I was Pissed at Crohn’s Disease.  Again!  Haven’t I been through enough already?

I was so proud of myself all those years for shouldering the Crohn’s Disease pain largely unmanaged.  My doctors gave confirmations which bolstered my right thinking.  I told myself I was doing a great self service by avoiding stronger meds so at surgery time I had more pain management options.  I equated pain endured to accomplishments.  Even more so if, on the surface, I made it appear effortless to those around me.  In reality, the way I endured Crohn’s Disease pain turned into a trap.

As of today, years later, I have healed to the point where I still hazard an educated guess when it comes to the 1 to 10 pain scale.  Which has always been normal for me.  I am friends with pain in that I tolerate it quite well, but no longer miss it.  I used to miss it.  I feel appropriate levels of discomfort when injured.  I no longer feel like a monster, but do still carry a shade of regret and shame.  Regret that I know exactly how pain can twist and whisper soothing things to you, and if it happened then, will it happen again?

Painting Rainbows on Jagged Glass

You know what, I’ve been in a lot of pain lately.  Don’t get me wrong; I’m a pro at remaining calm and carrying on.  But wow it’s been difficult.  Someone noticed I wasn’t feeling well today and that was hard.  I thought I was doing a much better job of playing normal. Darn, darn, darn!

Pain, fatigue, lack of sleep, achy joints, clammy sweating during the night to wake up cold and in need of an insulating layer of beach towel as I’m too tired to change the bed and guilt and shame over the idea of waking my comfortably sleeping husband over repeated restlessness. I will close my eyes, I will shut down, I will open my eyes again with that sense of having having never rested. Whatever restoration I take in those moments is my fuel for the day. I walk around feeling like a wrung out rag with a job to do.

I get winded doing the simplest things. Breaking down processes to make them more achievable such as folding laundry, making dinner, even getting ready in the mornings is the only way to get them done. Y’all just need to calm down and be patient or help me out. Mommy needs a break for a minute.

It’s hard to balance what to share, how to share in a situation that is still evolving, and tell the truth without bringing you (or myself) down. A big part of my success at carrying on is minimizing my experience and pushing off that gravity. Move forward always. Coping by painting rainbows on jagged glass is my specialty. I’m simply trying to walk carefully through this rough patch without getting cut.

My liver levels are off. I have pain that kicks and stabs from within. I have difficulty keeping down food. I am jaundiced and really hoping no one else will notice. I am worried for my family. I’ve been this sick before and I hate that I’m here again. I’ve got a bucket of anxiety and it’s overflowing.

Of course someone could tell my normal was a big ol’ act put on for everyone else. My heart wasn’t in it.

PS.
All of you out there not feeling so great but killing it anyway totally Rock!