Hanging out with shadows.

This isn't going to be a pretty blog entry.  It's just going to be a confession of sorts.  I feel a bit like a shadow.  I'm still me, but just not quite as recognizable.  I feel like a watered down version of me.  Today is the kind of day that serves as a reminder I'm much less "me" now than I was before l was diagnosed with SLE. 

The world still has all of it's color.  The beauty that I see all around me hasn't diminished.  I still see so much of life through an optimistic lens and I like that.   I hope that I'll always at least try to find the good in every situation.  I still believe in hope.  I'm the one whose faded.  It feels like I straddle the line between living completely and often paying dearly for it and being a "Peeping Tom" and just watching life unfold and being present for it, but not really there. 

 

It completely sucks because it's not how I want to be.  The harder that I try to keep up and just be normal, the harder it is to ride out the bad days that come as a result of trying to just be normal.  It only took two "normal" days to completely devastate me.  I'm afraid of having the good days because I dread the bad days.  If it were only physical pain, I could learn to deal with it.  It's the emotional aspects that weigh so heavily on my shoulders.  The emotional toll this all takes on me is much worse than the physical pain.

Being mindful of making sure that I don't overdo it is completely exhausting.  I miss being able to just live.  I hate the delicate balancing act that my life has become.  I know that it's that mindfulness that is the spine of avoiding days like yesterday and today.  I just resent that it's become necessary.  I'm angry with myself when I don't do it and I'm angry with myself when I use caution.  Are my choices really either crippling pain and a virtual inability to function or just being an observer to my own life, not feeling like I have a role in it.  Am I going to end up being a stranger to my own life? 

Sometimes I spend a good deal of time feeling inadequate.  Sometimes I feel like I've let down every person who loves me because of what I feel reduced to.    Sometimes I feel ashamed because I need help now and I'm not used to that.  These feelings are not the kind that I like to share with anyone.  If someone else were wearing my shoes and told me about feeling like this, I would be doing all that I could to comfort that person and I would be as supportive as is humanly possible.  I wouldn't even hesitate.  My shoulder would be there to lean on.  I just don't do well with giving myself that same courtesy.  I'm hoping that by expressing these feelings, that maybe I can learn to give myself a little bit of kindness.  I would be able to give that kindness to anyone else, and if I can show compassion for other people then I can learn to have compassion for myself.