I am chronically ill. That is no secret. I cope with it as well as I can – I have my good days, I have my bad days. I have the days where I can do things, and I have the days where I lay in a pitiful puddle on the couch with blankets and my stuffed monkey (ideally, a cat or two has joined me).
As a result of chronic illness, I’m pretty tolerant of pain and even the occasional acute illness. But then, you have your chronic illness becoming acute. And that’s when it gets hard. That’s when things start falling apart. That’s when my coping becomes not coping as well as I once did.
As you may have noticed, I’ve not been updating as much as usual. November considered of three ER trips, one urgent care trip, multiple outpatient trips, and an inpatient hospital visit. Things are still bad. My health is still gone.
Things got better for a few days, and then came crashing down again. I try so hard to strike the balance – how do I ration my energy? How do I do the things I need to do? How do I do the things I want to do? How do I live my live and enjoy the ride, vs just hanging in there?
I try so hard to be a good disabled person. I try to stick to my upbeat, happy-go-lucky, spunky self. I try so hard to not be bitter, to not be cynical, to do all the things sick people are supposed to do – roll with the punches, act like I’ve got my act together, keep the delicate balance of keeping real while still keeping certain things quiet.
But it’s at the point where I can’t hide how sick I am. I can’t hide how exhausted I am, despite sleeping. I can’t hide the coughing. I can’t hide the fact that I’m in an incredible amount of pain. I can’t hide the fact that I’m terrified my NF is taking over my life and it isn’t just a minor hiccup. It’s scary. And it’s so *hard*.
I hate the blurred lines between acute and chronic. I hate the fact that my activism and advocacy – the two things I love doing almost more than anything, are taking a hit. My relationships with friends. The things that need to get done simply don’t. I try so hard, I struggle so much, but when chronic becomes acute… it gets hard.
Most of my acute health updates will be published on my CaringBridge, but as this is more general related, I put it here. Because I am sure others can relate to the struggle. The struggle when chronic becomes acute. When accepting being disabled becomes desperately searching for answers and hope and treatment. When trying my damndest just to stay comfortable becomes a struggle.
Be gentle. Handle with care. Because when we cross the delicate line from chronic into acute, that’s when we need your support and for you not to leave us.