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!!!