Perspective

In the course of writing my post yesterday, I decided to google "endometriosis blogs" and see what was out there.  Maybe not the best idea.  There were a bunch of blogs, but they were, for the most part, seriously depressing.  One that stood out to me was actually titled "Endometriosis and Suicidal Thoughts."  I didn't read further.  I can state with certainty that even if I have to deal with chronic pain for the rest of my life, I have no desire to end my life.  

Anyway, these blogs and their titles made me think about my perspective.  I try not to dwell on setbacks or pain because it can become frustrating and overwhelming.  I wonder though if by not sharing the really bad times if I make it harder to understand what I am going through.  I wake up everyday and the first thing I think of is "check your pain level."  I'm probably not going to write like the world is ending or that I have it SOO bad because in my opinion, there is always someone who has it worse than I do. I now refuse to answer the question "rate your pain on a scale of 1-10" because I am terrible at it.  I was in very bad pain, but kept thinking there must be someone out there in worse pain than me, so that precluded me from answering 10 and probably downplayed what I was going through at the very beginning. I've learned how I need to answer that question if I'm in an ER but to me it is way too subjective to be effective.  That doesn't mean my life is easy.  I mean, 3 years ago, my life was pretty awful.  I was so medicated and the pain was so bad that today, I feel almost glad that I'm doing better than that.  But I'm not healed.  There is no cure for endometriosis.  

I have developed coping techniques that help me manage pain levels and keep my body as regulated as possible.  I think by doing that, I may have fooled some people in to thinking I am better than I actually am.  For instance, I have to be vigilant constantly at parties and gatherings for the first sign of pain because that is a sign my meds are wearing off and if I have to drive home, I know I will need to leave within the hour or I will be in a world of hurt when I get home.  And with this type of pain, and I probably most pain, it is so much easier to manage if you get ahead of it or take your meds at the first sign.  Waiting to take them until I get home because I don't want to leave a party or holiday or other even leaves me in a lot of pain that ends up being a lot harder to get rid of.  I consider myself lucky to be able to go meet someone for lunch or see a friend or attend family gatherings.  I am off of 85% of the medications I was on which is great but part of managing my pain is that in the back of my head I constantly think that I do not want to ever be that medicated again.  So I am cautious.  

I do not think of myself as a victim or a "sick person" but I know that I am.  I am a victim of an illness that totally sucks and nobody fully understands.  Since most of my day is spent managing pain or reactions or taking pills at the right time and feeling nauseous from certain ones, etc. when I am out of the house, I prefer to talk about anything else.  It's nice to take a break from being so measured and so scheduled.  I hope though by not always talking about how crappy my day was or how tired I am because sleep is the hardest part of my day, people do not assume I am "all better."  There is no cure for endometriosis.  I have a severe case.  I will deal with it in some way for the rest of my life.  

I know I touched on pain management and my days and medications and I'll get into those things in more detail but seeing the depression and hopelessness that were pervasive on some other blogs, I wanted to share my thoughts.  If you are bored, do a google search for some of the other blogs and you might get a different perspective than mine.  I have also included some links to other women's blogs on the right side of this page if you feel like checking out other people's thoughts and journeys.  I do not have a lesser case than any of those women, we just cope differently.  I don't know which way is healthier and I know there is inherent frustration with this disease that you just need to express and I assume a lot of women have taken to blogging to help with that.