I now have enough self-awareness to know that something is amiss so I took a selfie. Sure enough, my eyes are fucked up. I remember early on one of my Doctors telling me that he could know how I was feeling just by looking at my eyes. Then after MONTHS of explaining it to neurologists and others, I finally went to my eye doctor who knew something wasn’t right. (read about that here).
I see this exact look in many other survivors eyes. I can’t quite explain it, but i know it when I see it.
I’ve been fortunate that I’m beginning to feel better physically, and that my eye episodes are less frequent. But when it flares back up, it’s SO exhausting. I have yet to figure out what causes the flare ups, but I suspect they’re related to my upper neck/lower skull. I’ve probably inflamed something with doing plank pose recently. But I won’t let it stop me. So what if I need an extra nap and to walk more carefully?! I can finally do physical activity again and nothing is getting in my way!