An ICU story: it's okay to need help
Before I was in the ICU, and I mean until the very moment I woke up in the ICU, I persistently found it very upsetting when people would have to help me do things. Now, don't be confused, I was grateful to be helped. I needed help doing some things for the whole year prior to my ICU stay. I needed help doing these things: shoveling snow, moving groceries, doing laundry, moving items up stairs in building without an elevator, etc. When I woke up ICU, I need help doing these sorts of things: walking to the toilet; washing my hair; putting my shoes on; getting situated in my bed for sleep.
Actually- in the ICU, I learned from one of the doctors that in his opinion, getting situated in bed for sleep is one of the most athletic things that humans do all day. Think about it for a second. To prepare for sleep, you sit on your bed, lay down one way, shift your body different ways while supporting your full body weight in other ways. At some point, you are you lifting most of your body weight to roll over, position legs and feet, move closer to a pillow, reach to take your glasses off. It's a lot of work- it can take your breath away!
In ICU, I had several experiences that helped to snap me out of my persistent upset when being helped.
I had this nurse that was very, very pretty. She looked like a barbie doll from one of those Style Me Pretty Barbie heads where you could do the hair and makeup. She wore pink glittery eyeshadow, pink blush, and pink lipstick. Her hair was light blond and curly. She was in shape. And she was a total biiiiiitch. When her shift started, she spent the first 30 minutes of time in my room complaining about every single thing the previous nurse did. She walked around the room, moving random objects and explaining why "the idiots" before her were making "a complete friggin' mess" of the room. Oh, and did I mention she was about 25 years old? You know, she must have learned a lot in that three years of experience. I'm sure she was the top dog around there.
Anyhow, the night with her went as expected. She spent most of her time outside in her mini ICU cubicle, while the other ICU nurses seemed to have spent more time with me checking on things and offering to do physical therapy. I didn't really mind, because I needed the tiny bit of peace and quiet between the 7PM shift change and the sleeping time. And I was on BiPap a lot then, too. When she did come into my room, she completed the tasks of her job without much discussion, only expending her energy to question things out loud, "Why is this setting not WORKING!? [awkward bitchy smile]" or "Are you kidding me? 12 Liters?! WoOow. [awkward bitchy body surveillance]."
I did not like her one bit.
I liked it even less that she had to help me do things as listed above that are oddly intimate. "Can you find my underwear in the green bag? No, not those ones. No not those ones. Okay, those. Thanks." I hated it that she had to help find my pajamas and that she lingered oddly in the room as I changed. I hated it that she asked me if I needed to go to the bathroom before I went to sleep. And I hated it that she actually said to me, "I'm gonna tuck you in, so buzz me when you're really ready to go to sleep."
I know, it's nauuuseating.
When I was ready for bed, I did as I was told. I buzzed the nurse call button. The pretty nurse came in and turned down all of the lights in my room. She went to the back of the room and got out four big pillows from a closet. She took the old blankets and top sheet off of the bed. She asked me to sit up in the middle of the bed, and she put two of the pillows in an odd configuration behind me, and she told me to lay down. Still cautious but also very very tired (barely awake, really), I laid down. She put a large pillow on each side of me that I could lay each of my many-wired arms on, and then she laid first a fresh white sheet from my waist to the end of the bed, then a fresh warm blanket, and she folded a second warm white blanket at the end of my bed, in just the spot where it would add an extra cover for my feet below. Then she went to the side of the bed where my BiPap was and held it up- time for the mask. She helped me put my BiPap back on while I was still laying down, and as we were futzing with it, she said, "Earlier you said that worried you would fall out of this bed, since you have a queen at home, so the pillows should help with that. And the pillows this way behind your head should make the mask more comfortable so if you roll on your side or whatever it won't pinch your face or start leaking. Are you comfortable?" I nodded, I was falling asleep. I was about to sleep like a baby, all tucked in, and I was too tired to be all upset about.
As I was falling asleep, I distinctly remember thinking, "I love the pretty nurse. She's not mean at all."
It's always so awkward to have to interact with nurses on such a personal, intimate, one-way level like that; I don't mind (and even enjoy sometimes) the normal, non-medical chitchat that makes me feel normal, but having to actually ask for their help with such personal stuff...ahh.
I think we (I, ha) end up a little more defensive than normal just b/c I feel so damn vulnerable (NOT MY THING) and out of control (EVEN MORE NOT MY THING) when you have to have help for such basic stuff like that...so I end up kind of snappy and hateful feeling towards nurses and other staff that are usually just trying to help me. It's also really weird when you decided that one of them is an idiot, or mean, or both, and they turn out to be neither...but even scarier and more unsettling when you think that you've got a "good one" who's really on top of stuff and nice and all, and then they majorly botch something or get mean and snippy unexpectedly, etc. And esp. when you're a VIP like us, and you know you'll be back, it's a lot harder to figure out when it's worth the possible future repercussions to have them switch your nurse, and when you can suck it up til 7, haha.
Idk...I just really suck at being that dependent, I think partly b/c it terrifies me as much as it embarrasses me. It's one of my biggest fears about major ICU-ness later, b/c they're so much more strict about who can be with you when, and so far, I've really lucked out and had MDs willing to write orders to let somebody stay with me 24/7.
Sorry for the rambling blog-post of a comment. I really appreciate your honesty about all this type stuff, the non-clinical side of things that no one tells you about, because it always either a) validates that I'm not crazy or a bitch (or that if I am, it's not just me, tehehe), or b) gives me this, 'THANK YOU!' feeling for the insight into what's probably ahead that I either haven't considered in that way, or if I have, and voiced it, it's been all 'sunshined out' and glossed over and such, leaving me feeling paranoid - until AHA! CG said X DOES happen!
And I promise I'm not just being a kiss-ass. :o)
Just Because Everything's Different Doesn't Mean Things Have Changed
NOTE: The most heavily edited CGUnBlog to CG post evahhhh.
Being sick doesn't change a damn thing in your whole life other than in your own body and in your own mind. Being sick and even dying doesn't cure your problems, it doesn't bring back old lovers or make you love or hate them less, it doesn't take away the stresses of your job even if you don't go to your job, and in fact it does not even pay your phone bill for you. Being sick changes nothing.
[OTHER HEAVILY EDITED SAD/ANGRY BULLSHITTERY]
A CGUnBlogger said...
Thx for the invite. I went back and read your old posts and you often write almost exactly what I am feeling. We aren't exactly in the same place, CF-wise, I'm just a little above being listed. But since my family found my blog it's hard to share some things, especially when I know they are going to put a negative spin on it.
Well said. We continue to live while dealing with the rest of this crap. You are correct we are not dying! We are just in a different phase of our lives that most people will never experience.
OMG. preach on, CG. I read this one after the one below it, and I swear it's like you're reading my mind all the way from
I'm obviously not in the same spot you are, progression-wise, but I'm one of the "wild-swingers"; there are some folks who just neatly creep, creep, creep down their slope of decline, nice and neat, in little chunks of percentages here and there (which, I in no way intend to minimize, it sucks and is cruel no matter how it happens). But I hang out in the low 60s for a while, then get sick and drop down in the low 40's (often within days), and then do IVs and (thankfully, for now) swing back up in the 60's...so I go from being "really good" to "really not" really quickly, and back again. And it seems like I'm swinging much faster than before, so I honest-to-God never really know what I can reasonably expect of my body on any given day (or sometimes hour). And every time, this same crap happens, as I've well documented on my blog. Point being, I'm in no way trying to be one of those awful story-toppers, just want you to know that despite my admittedly higher numbers, and that I can't relate to everything you (and others here) are dealing with, I swear I'm not the equivalent of the people saying, "Hey, I had a cold like that one time, so I totally get what you're dealing with".
I think the Holy Grail in chronic illness like this is finding the person (or if you're lucky, people) who truly understand that your illness is not *their* life event to script and manage and control, and that it "happens" to them only in as much as it "happens" to you; especially when you are the type of person-patient who understands that you are not ill in a vacuum, and care and consider how you and your actions affect others...but that you and your own health (physical and mental) sometimes have to trump politeness. I hope you have at least one to make the others a bit more bearable.
And I swear I'll just start emailing you instead of blogging in your comments section :o)
Please please please continue to post this stuff in the comments section, esp. on UnBlog- since it's private readership! Then everyone can breathe a sigh of relief that we are feeling the same feelings!!
Stream of Conscious: i.e. I'm too tired to write a formal post:
here I go go go keep going which is kind of how i live these days go go go keep breathing moment to moment can i get from here to there can i get to the bathroom can i get to the kitchen can i get through dinner i don't feel so good what is that pain in my ...oh good the pain is gone or is that the pain in my...i should take a nap and i think then the pain in my ...what, oh yeah, i did forget that medicine, thank you and ouch the pain in my chest. f. I think that was a little air bubble bursting. ouch. over now. funny that it hurts the most when it's still working and then POOF when it breaks it doesn't hurt anymore. it is cold here. i walked in the cold to my car and i thought my oxygen was on 3 continuous but it was really not on at all. the little nobby thing was stuck between 2L and 3L so I got no L and I was walk walk walking shuffling fast in the cold and feeling like this is not good this is not good this is not good what is that pain in my ... i think i'll just sit in my ... maybe when i warm up my . . . god there's that pain in my ... ow. ow ow OW. fuck. i've got to get going. i drove half way home before realizing there was no cold air blowing up my nose, pulling over to see my oxygen wasn't even on so that is the reason for the pain in my . . . ow. ow ow OW. i need my new lungs nOW.
ha. not so moving as some others, but gets the point across. goodnight- biPap for me. Incidentally, when I did get home from dinner, I had to go on BiPap pretty quick because I was exhausted. I must've been off of O2 for 10 or 15 minutes AND walking to my car, and waiting for it warm up, and driving half way home before I pulled over. I'm glad I pulled over. Just when my neurotic checking my o2 by pulling it out of my nose was wearing off! I feel better now but jeebers.
A CGUnBlogger said...
i know im not in as much pain as you. but i hate when youre breathing and then its exactly like you described... literally made me laugh out loud b/c its what I think in my head.
oh and I like the "best of unblog"... I wouldnt mind be quoted (if I ever said anything good enough for it haha), anoyn (I cant spell anoynomously) though, though no one knows me but i like the idea of the super secret unblog haha...
A CGUnBlogger said...
I play a game with myself sometimes when I don't feel good. It goes something like this: At I'll take my shower. Then sit down. At I'll brush my hair. Then sit down. At I'll brush my teeth. Then sit down. And so on, and so on. Sometimes it is the only way I can get anything accomplished when I feel like shit.
And I've completely done the whole walk around and not realized my O2 was off before. Until I got back and checked my sats and they were in the 70's. You'd think I'd be more aware of my surroundings, but I swear to god, if something isn't stapled to my forehead there is a good chance I won't remember it. I blame it all on CF. LOL.
nothing really to add here, except I still love your posts. And I love your description of the thought process w/ the pain. And I agree w/ [that other CGUnBlogger] on the little breaks while getting ready...but usually, when I feel awful, I put off getting ready until thelastpossiblesecond so it's not really an option. That way, in my crazy pink lady brain, when I look like crap (which I would whether it took 2 hours or 15 minutes, feeling that bad)I can blame it on "running out of time," instead of "Yeah, it took me hours, but I can't breathe and this is as good as it's going to get right now. Enjoy!" Isn't THAT rational?!
I do roll my desk chair over into my bathroom and sit while I do makeup, though. That helps. Can't sit while I do my hair, no idea why, but it never works right.
Also, unless I preface it with "sweet lord please never publish this thought anywhere but here", you can use my comments, anon or non-anon (reminds me of the Jeff Dunham Peanut skit, "Sah-Nah-TAH-ah-NAH").