![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Entry tags:
(no subject)
Am quite tired. Apparently therapy sessions that involve a lot of crying and poking at deeply inrooted issues? Not an easy thing.
I've known for a while that I have a lot of (unreasonable and illogical) guilt over being disabled, and over being a burden on people. (Especially my parents, because there is an expectation, probably a cultural narrative, that parents raise their kids for 18ish years, and then the kids metamorphose into full-fledged adults and take care of themselves, and take care of their parents when said parents get older. And my parents got stuck taking care of me for the rest of their/my lives, and it fundamentally isn't fair to them.)
It's not a rational thing -- I didn't *do* anything to get disabled -- but it's a very, very deep part of myself.
And I realized today that a large part of it is not guilt over having FOP in the first place, but over the progression of the disease.
Rationally, I know that FOP is random and capricious. It can lie dormant for years; it can explode into activity and lock up a joint overnight. It's not curable, it's not treatable, and it's not preventable. We take Prednisone to try to treat the inflammation of active flare-ups, but it doesn't affect the bone left behind (which is also apparently arbitrary; sometimes flare-ups go away with no permanent change, and sometimes they leave presents, and you never can tell which it's going to be), just the early stages of the flare-up itself.
Non-rationally, I wonder if somehow something I did hastened the progress of what I have now (or if something I didn't do might have slowed it in some way). If I'd pushed myself to walk more in college, rather than using the wheelchair for things like going from my dorm room to the showers -- if I'd exercised more, or eaten healthier, or whatever -- if I'd tried harder, or behaved better --
(and this sort of thing rears its head with the current tooth situation, because while I knew that teeth health was important, and while I was still seeing a dentist regularly and stuff, I wasn't brushing quite as many times per day as I was supposed to, nor was I always using the fluoride mouth rinse, and maybe if I had been better and more diligent about stuff I wouldn't have a cavity now)
I found it really hard to talk about -- the guilt thing, I mean -- but better in the end for having figured it out.
I've known for a while that I have a lot of (unreasonable and illogical) guilt over being disabled, and over being a burden on people. (Especially my parents, because there is an expectation, probably a cultural narrative, that parents raise their kids for 18ish years, and then the kids metamorphose into full-fledged adults and take care of themselves, and take care of their parents when said parents get older. And my parents got stuck taking care of me for the rest of their/my lives, and it fundamentally isn't fair to them.)
It's not a rational thing -- I didn't *do* anything to get disabled -- but it's a very, very deep part of myself.
And I realized today that a large part of it is not guilt over having FOP in the first place, but over the progression of the disease.
Rationally, I know that FOP is random and capricious. It can lie dormant for years; it can explode into activity and lock up a joint overnight. It's not curable, it's not treatable, and it's not preventable. We take Prednisone to try to treat the inflammation of active flare-ups, but it doesn't affect the bone left behind (which is also apparently arbitrary; sometimes flare-ups go away with no permanent change, and sometimes they leave presents, and you never can tell which it's going to be), just the early stages of the flare-up itself.
Non-rationally, I wonder if somehow something I did hastened the progress of what I have now (or if something I didn't do might have slowed it in some way). If I'd pushed myself to walk more in college, rather than using the wheelchair for things like going from my dorm room to the showers -- if I'd exercised more, or eaten healthier, or whatever -- if I'd tried harder, or behaved better --
(and this sort of thing rears its head with the current tooth situation, because while I knew that teeth health was important, and while I was still seeing a dentist regularly and stuff, I wasn't brushing quite as many times per day as I was supposed to, nor was I always using the fluoride mouth rinse, and maybe if I had been better and more diligent about stuff I wouldn't have a cavity now)
I found it really hard to talk about -- the guilt thing, I mean -- but better in the end for having figured it out.