Lest you think these "Adventures" are, or are going to be, all fun and games for us, think again. Princess pays a big price. But after years of social isolation we have concluded the price is worth it. Harsh to put it this way but it's kind of like to live a little she's got to feel like she's dying a lot. And without any fun to be had, she just felt like she was dying all the time anyway (and me too, right alongside her). So we venture out, we explore new things, we laugh, we meet people. And when we make it back home, often much sooner than either of us would like, she's right back in bed and her body is in full-on FREEZE mode (though we have recently started referring to it as RECOVERY mode). As I described on the Chronic Illness page, it's her nervous system's response to perceived threats, affecting her body with involuntary physiological changes to protect itself, some of which we won't even mention.
Yesterday she had a friend over to visit. How nice, right? It really, really was. And it did my heart good to see her smiling so much! We hesitate to explain to people in any detail the price she knows she will pay because, well, no one wants to think they are the cause of her suffering. If we share too much about it, we fear they might not come. But after a couple of hours of catching up, she was completely wiped out. Mind you, she did nothing physical; but the visit made her happy, and her body's response to that emotion was to freeze (or just shut down) as if it was experiencing imminent danger.
So here is her beautiful self recovering from too much happy. I helped her to bed - some ginger beer to quell the nausea, earphones to cancel out any noise, weighted blanket to calm the shaking, wedge because we can never find the damn remote for the adjustable bed, lol. She has one finger up to answer with a "yes" that I can take her picture. On my way out, I close the black-out curtains and turn on the heater. When she wakes from this (could be days-long), I'll help her get to the bathroom, brush her teeth, wash-up, etc. After a little smoke, we might be able to stimulate her appetite, too. Of course none of this is ideal, and some may say it's not worth the price, but it is to us. It's a choice we have made for quality of life until, someday, they find a freaking cure.
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