Monday, July 27, 2015

Lupus Summer

I just took a moment to get a "dose" of sun on the deck.

I felt *good* as in not sick, not tired, not sore, and muscles calm (instead of spasming).  It was a beautiful moment in the sun, because all of those maladies are with me most of each day.  It was a delightful moment of victory to enjoy 5 minutes of peace and the feeling of health.

It's been a surprising summer, and not just because of the amount of chores the kids have mastered :).  My struggling health caught me by surprise, just like it has every step of the way.  This winter as I did my steroid treatment and then waited the three months for my malaria meds (for lupus) to kick in I saw myself as enduring a waiting period.  "When the sun shines, when school is out, when I can finally get in a few good naps, I'll be back to normal,"  naive me thought....

Instead, getting the kids to swimming lessons each morning was almost all I could manage in a day and after the first session, when I was not careful about sun exposure and protecting my energy levels.  Thankfully, somehow, we still got through 4 weeks of lessons and the two oldest actually finished out the final levels.  So looking back I can say something major was accomplished, I just felt like I was in a struggling fog the entire time I was doing it.

Mr. Warmth has taken a 4 day vacation from work and stuck around home and I've been taking more rest than ever.  It surprises me how bad I need it and then I am surprised again at night time when I still need that sleep as well.  It is such a mental adjustment to go from finding extra hobbies and ways to serve, or ways to make money to feeling like your only purpose in a day is to survive.  I've done that at temporary emergency type periods in life, but looking at a future like that is tough for me to do. 

There are so many blessing amidst it all, I don't write this stuff to dismiss them.  I just choose to value my feelings of both kinds enough to acknowledge them. 

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