living with lupus, day by day, moment by moment

If an experience is a great teacher, there is no greater teacher than a repeated experience.  It allows us to have a point of comparison between different times in our lives, and edits whatever imaginary views we have in our head. 

Ever since I became sick, I have a hard time adjusting my realities.  I don’t know what my real, versus perceived, limitations are. Time moves slowly, my illness fluctuates from sickness to illness to sickness, and recovery is illusive.  Sometimes I can do more than I think and sometimes I can do a lot less than I think.

A week ago, I was fortunate enough to travel through Costa Rica on a weeklong vacation.  It was my first “real” trip since I was diagnosed with lupus. The last time I was in Costa Rica was almost 13 years ago.  I was younger, yes, but more than that, I was healthy!  Up to that point, I haven’t experienced an illness more serious than a flu.

This trip was a lot different. I could not take long hikes in the cloud forest looking for quetzal birds or howler monkeys.  I didn’t do a night hike looking for night crawlers.  I couldn’t walk through the hanging bridges to view the active volcanos.  I wasn’t able to zipline. I couldn’t go horseback riding on the beach.  I couldn’t bask in the warm Costa Rican sun. 

Yes, it totally made me upset.  On top of not being able to partake in all of these activities, I spent much of each day just resting. It was hard not to compare this trip to the one I took when I was a healthy person. 

But then reality adjusted itself and I was able to be grateful for my vacation.  Four years ago, when I was hospitalized and undergoing chemotherapy, I did not think I’ll live to be able to even walk again.  When I was bedridden and fighting for my life, a trip like this? – it was unimaginable.  So this repeated experience, while it showed me how limited I am now, it also showed me how far I have come within the context of my new health reality.  I leaned to enjoy the beach at sunset, and instead of a hike, exploring the forest on a nice river raft. 

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