![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
ysobelApparently it's been like two weeks since I posted. Oops? Still alive.
Things of note:
- brainweasels (esp. depression related) have been eating me alive
- cancer sucks. my mom is dealing with breast cancer -- luckily one of the better sorts as far as those go, but still -- and *her* mom, the last surviving of my grandparents (at least by blood) is apparently imminently dying of cancer that she's been telling everyone didn't exist because they took out most of her lymph nodes a few years ago and that made her cancer free, except it turns out the reason they didn't do followup chemo at the time was that the cancer was too far advanced, but that's okay because essential oils and Perrier water cure everything, and no one in my moms family seems to be either a reliable narrator or a competent adult. And as callous as this sounds I don't particularly care that my grandmother is dying; I care inasmuch as dying sucks, but I haven't seen her in decades and I'm not really close to her, but the situation is a whole big mess, and my mom is angsting vociferously about how she doesn't have energy, health, time, or money, to go out to the Midwest, but she's never going to see her mother alive again wah, but she doesn't have the *energy* woe.
- oh and in "thank you universe, I totally needed that right now" timing, the lift I use to transfer between bed and toilet and wheelchair ... decided to stop working.
I got into bed last night, swapped batteries on the lift because it was doing the low-battery chirp, and the lift stopped working. It clicked like a mechanism is engaging, but did nothing. Swapped back, same. Swapped to the old battery that I was using as emergency backup, same.
To sum up: Fuckadoodle.
This morning the lift still didn’t want to work, with any batteries. My dad and stepmom were able to come over when my morning aide did, to help with stuff, because there’s no way that any one person could have done anything otherwise. My dad fiddled with the battery contact bits inside the lift in case that was the problem, and the lift worked for about a minute before dying, which was long enough to get me up out of bed but not down to the commode chair. And there is no manual release that disengages the “brakes” holding the lift in place (or more precisely, there is, but it only works if the strap holding the lift up is not under any tension, so it can’t be triggered with weight on the lift). So instead we got me over to the wheelchair (higher than the commode by a few inches), elevated the wheelchair seat enough to get the sling straps unhooked from the lift, and did a normal toileting, aka standing transfer to the toilet in my bathroom.
Standing transfers are even less fun now than they used to be.
Even with two people carrying most of my weight (and the third as navigator and wiper and puller up of pants), it was, ummmm, pretty much a nightmare. My knees don’t like bearing weight at all, my calf muscles (such as they are) kept cramping, and by the time we got me toileted and wiped and dressed and back in the chair, I was shaking and sobbing in a semi-hysterical meltdown. Because I am just awesome like that.
(My dad did reinforce the Things I Know Intellectually (But Have A Hard Time Believing Emotionally), i.e. that the disability is not my fault, trouble standing is not my fault, and the fact that other FOP people are still standing and walking doesn’t mean I’m a failure for not, so I was able to calm down enough to get through the rest of morning routine. I spent most of my alone times during the say being a sobbing wreck, but only while people couldn't see.)
We have a battery coming by next-day shipping, which my dad ordered immediately just in case it is the battery (though at this point I’m pretty sure it’s not a battery thing, because none of the batteries worked, and because it was clicking like a mechanism was trying to engage, which isn’t the dead-battery behaviour), and a new lift coming Saturday (no one local had it in stock and by the time we got it ordered, we had passed the deadline for getting it by Friday, because the manufacturer was on east coast time or something).
In the meantime my dad sacrificed sufficient chickens such that the lift now works most of the time if we're careful. Which is good because if I have to do more stand transfers I am going to have a complete and utter breakdown.
meanwhile I am trying not to either cry or hate myself (my brainweasels are having a field day with this: my fault for not being able to stand, my fault for weighingn so fucking much, my fault for needing help, my fault for being weak), and it’s not easy. And yes I have a bunch of awesome people whacking me metaphorically over the head with pool noodles saying it's not my fault at all, but my default seems to be to attack myself, especially when I'm vulnerable.
- chorus starts back up next week. Yay.
- get to visit sister and niecelet Saturday. Yay times infinity.
- am rewatching Leverage. Still awesome.
- Also I am feeling ridiculously and pathetically lonely right now. Not in a disconnected-from-people way, because I have you guys and other online groups and church people and my roommate and choir (when it meets) and stuff, but … in a I-want-a-snuggle-buddy way. Except I’m not really snuggleable. But I want … maybe it’s just a matter of needing more touch, both casual and intimate (not necessarily in a sex way, just in a close-relationship way). I get touch from my mom, but that has iss own amount of awkward; I get touched by aides, but that doesn’t really count; I get occasional as-best-they-can hugs from a few church people who like hugging; but … argh, I can’t even really explain what I want, except: cuddles. Which are literally impossible.
Things of note:
- brainweasels (esp. depression related) have been eating me alive
- cancer sucks. my mom is dealing with breast cancer -- luckily one of the better sorts as far as those go, but still -- and *her* mom, the last surviving of my grandparents (at least by blood) is apparently imminently dying of cancer that she's been telling everyone didn't exist because they took out most of her lymph nodes a few years ago and that made her cancer free, except it turns out the reason they didn't do followup chemo at the time was that the cancer was too far advanced, but that's okay because essential oils and Perrier water cure everything, and no one in my moms family seems to be either a reliable narrator or a competent adult. And as callous as this sounds I don't particularly care that my grandmother is dying; I care inasmuch as dying sucks, but I haven't seen her in decades and I'm not really close to her, but the situation is a whole big mess, and my mom is angsting vociferously about how she doesn't have energy, health, time, or money, to go out to the Midwest, but she's never going to see her mother alive again wah, but she doesn't have the *energy* woe.
- oh and in "thank you universe, I totally needed that right now" timing, the lift I use to transfer between bed and toilet and wheelchair ... decided to stop working.
I got into bed last night, swapped batteries on the lift because it was doing the low-battery chirp, and the lift stopped working. It clicked like a mechanism is engaging, but did nothing. Swapped back, same. Swapped to the old battery that I was using as emergency backup, same.
To sum up: Fuckadoodle.
This morning the lift still didn’t want to work, with any batteries. My dad and stepmom were able to come over when my morning aide did, to help with stuff, because there’s no way that any one person could have done anything otherwise. My dad fiddled with the battery contact bits inside the lift in case that was the problem, and the lift worked for about a minute before dying, which was long enough to get me up out of bed but not down to the commode chair. And there is no manual release that disengages the “brakes” holding the lift in place (or more precisely, there is, but it only works if the strap holding the lift up is not under any tension, so it can’t be triggered with weight on the lift). So instead we got me over to the wheelchair (higher than the commode by a few inches), elevated the wheelchair seat enough to get the sling straps unhooked from the lift, and did a normal toileting, aka standing transfer to the toilet in my bathroom.
Standing transfers are even less fun now than they used to be.
Even with two people carrying most of my weight (and the third as navigator and wiper and puller up of pants), it was, ummmm, pretty much a nightmare. My knees don’t like bearing weight at all, my calf muscles (such as they are) kept cramping, and by the time we got me toileted and wiped and dressed and back in the chair, I was shaking and sobbing in a semi-hysterical meltdown. Because I am just awesome like that.
(My dad did reinforce the Things I Know Intellectually (But Have A Hard Time Believing Emotionally), i.e. that the disability is not my fault, trouble standing is not my fault, and the fact that other FOP people are still standing and walking doesn’t mean I’m a failure for not, so I was able to calm down enough to get through the rest of morning routine. I spent most of my alone times during the say being a sobbing wreck, but only while people couldn't see.)
We have a battery coming by next-day shipping, which my dad ordered immediately just in case it is the battery (though at this point I’m pretty sure it’s not a battery thing, because none of the batteries worked, and because it was clicking like a mechanism was trying to engage, which isn’t the dead-battery behaviour), and a new lift coming Saturday (no one local had it in stock and by the time we got it ordered, we had passed the deadline for getting it by Friday, because the manufacturer was on east coast time or something).
In the meantime my dad sacrificed sufficient chickens such that the lift now works most of the time if we're careful. Which is good because if I have to do more stand transfers I am going to have a complete and utter breakdown.
meanwhile I am trying not to either cry or hate myself (my brainweasels are having a field day with this: my fault for not being able to stand, my fault for weighingn so fucking much, my fault for needing help, my fault for being weak), and it’s not easy. And yes I have a bunch of awesome people whacking me metaphorically over the head with pool noodles saying it's not my fault at all, but my default seems to be to attack myself, especially when I'm vulnerable.
- chorus starts back up next week. Yay.
- get to visit sister and niecelet Saturday. Yay times infinity.
- am rewatching Leverage. Still awesome.
- Also I am feeling ridiculously and pathetically lonely right now. Not in a disconnected-from-people way, because I have you guys and other online groups and church people and my roommate and choir (when it meets) and stuff, but … in a I-want-a-snuggle-buddy way. Except I’m not really snuggleable. But I want … maybe it’s just a matter of needing more touch, both casual and intimate (not necessarily in a sex way, just in a close-relationship way). I get touch from my mom, but that has iss own amount of awkward; I get touched by aides, but that doesn’t really count; I get occasional as-best-they-can hugs from a few church people who like hugging; but … argh, I can’t even really explain what I want, except: cuddles. Which are literally impossible.
no subject
Date: 2015-03-27 05:53 am (UTC)no subject
Date: 2015-03-27 06:30 pm (UTC)no subject
Date: 2015-04-04 03:27 pm (UTC)(I sent you a PM so you'll know who this randomly appearing stranger is.)
no subject
Date: 2015-04-04 03:29 pm (UTC)