Did I mention rage?
Hurt, anger, depression, exhaustion...
Yesterday was a good for me day, and I'm going to be paying for it for the next several. I get that I have an autoimmune disease and a host of related problems, but this is infuriating. So let's talk about what's become a good day for me, and maybe you'll understand my strange looks when you tell me I look wonderful and seem to be doing better.
Thursday I went to bed at about midnight (my time, I do not fall back off DST) and slept til about 8 when I woke up because my pain med had worn off and my back/shoulders/face were on fire. I took another and went back to bed from 10 to 1 Friday.
Once I was awake I read a bit online, watched some food porn (currently Masterchef Australia), had toast and an orange for breakfast and lazed around the apartment hoarding my energy so I could go out with T for his birthday later. J cooked a delicious dinner for us (beef stew), T shaved my head (I've gotten used to being bald, but don't like the patchy stubble), and then I went and threw up dinner wrenching my back in the process. I should note that I'm losing meals more often, and it doesn't matter what it is or whether I've taken pain or other meds or had a drink.
Thought about it, decided that damn it, it's T's birthday and we have plans so I got in the shower and soaked until I hurt a bit less. While I got dressed J cooked me dinner again (a grilled cheese sandwich this time, of which I managed half along with the necessary pain meds). Hoped to snag a root beer when the boys stopped for cash on the way to the club to settle my stomach more; no dice, had half an iced tea instead.
Got to Bunker and had a surprisingly good time there, but the stairs are fucking awful. I'd be much more likely to go regularly if they had an elevator between floors. Danced to two or three songs, had some good conversations, was told repeatedly that I look good bald. Avoided the stairs for as much of the night as I could, I think I went up twice once we got in, left around 3 (my time) and headed home.
Got sick again, cleaned myself up, cuddled with T, got sick a third time, took another long hot shower, slept from 5 to 10. Couldn't even pretend to sleep anymore (no pain meds when I can't keep anything down), so now I'm surfing the web and writing. Today will be at best a total loss; if I throw up more today tomorrow will be lost too. I'm hoping at some point I'll manage to hold down some toast or an egg.
As for the rest of the past week I haven't done much of anything - Sunday we went to Malediction which was about the same as last night although I only threw up twice; Monday through Thursday I didn't do anything except cook, read, and watch 'tv' while sewing - there seem to be piles of repairs and adjustments and it gives my hands something to do when they don't hurt to badly. I can't remember if I got sick other days this week or no, but if I did it was no worse than usual.
This is what my life looks like, and I hate it. I know I'm thinner than I have been in ages (I don't think I've weighed 115 continuously since my freshman year of college), and I'm lucky as hell to have inherited good genes and good bone structure so bald isn't a bad thing, but this isn't right. I'm taking my meds when I must (they're expensive and I'm uninsured, so I don't take them unless I really need them), I'm following the recommended diet, I'm spending as much of my time as I can stand taking it easy.
I would like to have more than one day at a time when I can actually do things besides eat, laze around, and sleep. I would like to be able to go hang out with friends on a whim, to wake up the day after I've left the house without wanting to take more pain meds and curl into a ball, to remember what the conversations I enjoyed last night were about. I'm NOT good at isolation, at not socializing, at not being able to do things for myself. And the memory loss makes me feel like I'm losing my shit.
If I didn't have an awesome support system I'd be homeless, if I didn't have local friends and get to go out sometimes I'd be more depressed, and if I couldn't still dance at least a little I'm quite sure someone would be checking me into the hospital. I struggle through every fucking day looking forward to the ones where I spend three or four hours being 'normal' and dancing. Thanks to those of you who help me get there, talk to me even when I can't remember your name or face, and spin music that's worth the pain (and don't freak out when I fall asleep on the couch at the club again).
Okay - enough rage, it's sunny and fairly warm outside in LA; I'm going to go take advantage of that while I can (thankfully we have comfy chairs on our patio). All comments welcome, but I may not respond quickly or at all. If you want to do something to help, spread the word about my clothing sale (previous post).
Yesterday was a good for me day, and I'm going to be paying for it for the next several. I get that I have an autoimmune disease and a host of related problems, but this is infuriating. So let's talk about what's become a good day for me, and maybe you'll understand my strange looks when you tell me I look wonderful and seem to be doing better.
Thursday I went to bed at about midnight (my time, I do not fall back off DST) and slept til about 8 when I woke up because my pain med had worn off and my back/shoulders/face were on fire. I took another and went back to bed from 10 to 1 Friday.
Once I was awake I read a bit online, watched some food porn (currently Masterchef Australia), had toast and an orange for breakfast and lazed around the apartment hoarding my energy so I could go out with T for his birthday later. J cooked a delicious dinner for us (beef stew), T shaved my head (I've gotten used to being bald, but don't like the patchy stubble), and then I went and threw up dinner wrenching my back in the process. I should note that I'm losing meals more often, and it doesn't matter what it is or whether I've taken pain or other meds or had a drink.
Thought about it, decided that damn it, it's T's birthday and we have plans so I got in the shower and soaked until I hurt a bit less. While I got dressed J cooked me dinner again (a grilled cheese sandwich this time, of which I managed half along with the necessary pain meds). Hoped to snag a root beer when the boys stopped for cash on the way to the club to settle my stomach more; no dice, had half an iced tea instead.
Got to Bunker and had a surprisingly good time there, but the stairs are fucking awful. I'd be much more likely to go regularly if they had an elevator between floors. Danced to two or three songs, had some good conversations, was told repeatedly that I look good bald. Avoided the stairs for as much of the night as I could, I think I went up twice once we got in, left around 3 (my time) and headed home.
Got sick again, cleaned myself up, cuddled with T, got sick a third time, took another long hot shower, slept from 5 to 10. Couldn't even pretend to sleep anymore (no pain meds when I can't keep anything down), so now I'm surfing the web and writing. Today will be at best a total loss; if I throw up more today tomorrow will be lost too. I'm hoping at some point I'll manage to hold down some toast or an egg.
As for the rest of the past week I haven't done much of anything - Sunday we went to Malediction which was about the same as last night although I only threw up twice; Monday through Thursday I didn't do anything except cook, read, and watch 'tv' while sewing - there seem to be piles of repairs and adjustments and it gives my hands something to do when they don't hurt to badly. I can't remember if I got sick other days this week or no, but if I did it was no worse than usual.
This is what my life looks like, and I hate it. I know I'm thinner than I have been in ages (I don't think I've weighed 115 continuously since my freshman year of college), and I'm lucky as hell to have inherited good genes and good bone structure so bald isn't a bad thing, but this isn't right. I'm taking my meds when I must (they're expensive and I'm uninsured, so I don't take them unless I really need them), I'm following the recommended diet, I'm spending as much of my time as I can stand taking it easy.
I would like to have more than one day at a time when I can actually do things besides eat, laze around, and sleep. I would like to be able to go hang out with friends on a whim, to wake up the day after I've left the house without wanting to take more pain meds and curl into a ball, to remember what the conversations I enjoyed last night were about. I'm NOT good at isolation, at not socializing, at not being able to do things for myself. And the memory loss makes me feel like I'm losing my shit.
If I didn't have an awesome support system I'd be homeless, if I didn't have local friends and get to go out sometimes I'd be more depressed, and if I couldn't still dance at least a little I'm quite sure someone would be checking me into the hospital. I struggle through every fucking day looking forward to the ones where I spend three or four hours being 'normal' and dancing. Thanks to those of you who help me get there, talk to me even when I can't remember your name or face, and spin music that's worth the pain (and don't freak out when I fall asleep on the couch at the club again).
Okay - enough rage, it's sunny and fairly warm outside in LA; I'm going to go take advantage of that while I can (thankfully we have comfy chairs on our patio). All comments welcome, but I may not respond quickly or at all. If you want to do something to help, spread the word about my clothing sale (previous post).