living with lupus, day by day, moment by moment

When my lupus flare progressed so rapidly that I was bedbound for months, I bid my time until I was able to join the living.  There were so many things I wanted to do “once I got better.”  While over the years my conditions improved, my body never fully recovered.  I became a spectator in my own life.  Hence, I would attend dinners but never be fully engaged.  I would take my son to the museum but sit back on the bench, on the floor, anywhere, always sitting and watching rather than actively participating.  In almost all the activities I engaged in, I felt like I was “just there” and no more than that.  It would get me down and the frustration shadowed any enjoyment I might feel.  I always felt like this kind of life wasn’t worth living.  After all, being able to participate in life only 10-30% while giving the best parts of myself to pain and illness seemed a fruitless way to live. 

This was absolutely the wrong outlook.  

I only regained my consciousness after about six months of enduring a psychosomatic flare (where my brain was inflamed) in early 2012.  After that, I had to endure the inflammation that wrecked my entire body (heart, lungs, etc.) for the rest of the year.  So it wasn’t until 2013 that I started to slowly regain my life (and my walk).

The last three years of sickness and recovery has been excriciatingly painful.  And I am still on that journey. 

Living life is just hard.  Getting up every morning is hard. Staying home is hard.  Going away is hard.  I try to live my life despite my illnesses but it is just so fucking hard! 

But as we all do at the end of the year, I was feeling reflective and looked back at all the memories I have created in the last three years.  And I was so happy that I did fight everyday to have some semblance of a life.  I was glad that I took my son to Disney World (even though the back story is that I had to rest a lot, skip some of the activities and some times just stay in bed), I’m glad I was able to pack my son lunch (even though I would feel incredibly sick and rest all morning to recover), I’m glad I met with friends (even though I was feeling sick and had to talk myself out of the anxiety), and I’m glad I had date nights with my husband (even though I would usually be sick during our dinner or on our cab ride home).

At the end of the day, I was there! I can’t be there all the time.  And when I’m there, I might not be fully understand engaged, but dammit, I was there, and I think, that is enough.  And I’m going to be happy with that. Here’s to 2016 and more memory making!!! 

3 thoughts on “Just being there, that’s more than enough

  1. sharon says:

    Thank you for continuing to write about the hard parts. Wishing you even more strength in 2016 to just be, and be present, damn the percentages.


    1. Thank you Sharon!!! Happy New Years and yes, Damon the percentages!


  2. sharon says:

    Thank you for continuing to write about the hard parts. Hugs


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