The Real Me

There is something I've been wanting to address for a while now but I guess it was never the right time.  For me, the time is now.  The images and words between/above/below the text feel very personal to me in this post.  I have realized that there is a glaring and important difference in people's perception of me as opposed to my actual experience while I was being diagnosed and up until my surgery and for a few months after.  The perception is I "dropped off the face of the earth," that I "wouldn't respond in a timely manner," that I didn't call back quickly or that I wasn't responding the way that others may have felt I should have responded.  I have a huge problem with all of those statements and I have a problem that nobody noticed...

I was drugged.  I was HIGH for two years.  And not euphoric high.  People may think "at least she's getting pain killers and can lay around all doped up.:  For people with real pain, those pain killers dull pain.  That's it.  I have not even gotten the "fun" part of being high.  I haven't felt anything other than either dulled pain or sleepy.  I don't think there's another way to describe it.  From the time the pain started until my surgery, I was on Multiple high level pain medications.  At one point, I was taking Oxycontin, Vicodin, Neurontin, Tramadol and something else I think I'm forgetting.  On their own, these are all pretty powerful pain medications.  I was on them all.  All the time.  And there was no transition period for me to explain to people what was going on.  I was in pain, it never went away, then came the medications.  So expecting me to have had meaningful conversations during that time, to remember what I said, to be anything but half-asleep really, is expecting too much.  The problem I've encountered, is that some people didn't notice the difference!  People needed me to explain all of this at the time, which is something I was not physically capable of doing.  I guess I could have started a blog then and you could compare what it is like now with me writing complete sentences with what I wrote then where it would probably sound like someone mentally incompetent, or drunk, or ON LOTS OF DIFFERENT POWERFUL MEDICATIONS!!  It just never occurred to me that people expected me to function on the same level.

I have heard recently that I seem to be more involved and more talkative and maybe more open.  I am sure all of that is true.  I think like me.  Like I have always thought.  I can communicate freely.  I understand what I went through and I know that feeling pain now may suck, but I feel pain while NOT taking all those very powerful medications and that is HUGE progress.  As for why I wasn't talkative or myself or whatever else.  Well... I was not myself.  I am positive I don't remember every day of those two years.  I may have looked like I was just tired but for me every day of those two years before surgery I had two options: tired and groggy or lots of pain.  Groggy usually won out.  So I may still be tired at times now, but it is because I am doing more... or because my insurance made me wait too long to get my shot... or because I'm just tired.  It is an important difference to note.  I'm not more of anything right now... I was LESS of every part of myself back then.  I am not more outgoing or social.  I simply have a lot fewer things holding me back from communicating effectively.  Feel free to treat me now how you would treat me for the other 29 years of my life.  But please do not assume that how I was before surgery is what I should be compared to.  

Beginning and ending strong medications can be a horrendous process.  I went through it many times.  In the midst of that I got a kidney stone that moved through the exact area where I had surgery and that put me back on some of the medications I had already stopped.  You may notice some differences, and that is great, but I would have hoped that you would have noticed how not-myself I was then, rather than how "normal" I am now.  I have gone through it all and the one thing I think it has done is made me feel pretty self-assured.  I know my pain is real.  I know I wasn't myself for those two years.  And I know that while my life isn't perfect right now, I can cognitively process information at my normal level and I can manage my pain without the use of incredibly mind-altering drugs.  I've done all that WHILE managing life stressors that seem to have come just while I'm at my lowest, so I don't feel the need to seek validation for my "illness."  It's real.  It was real the whole entire time.  I can explain it better now and I am fine with that and I will answer any questions I can if it will help you better understand what I am saying.  But I'm not more of anything today other than more "ME."  It was losing everything that made me "ME" that only made dealing with endometriosis harder.  I would have advocated more strongly for myself, for sure.  But I feel like my eyes are more open in a way because I know exactly who knew the real ME and who seemed to forget.  The real "ME" would never blow off friends and suddenly stop doing something I felt passionate about.  In my mind that was always so clear.  But I guess the medications didn't make just me hazy, they made it so people around me stopped seeing me as clearly.