how I've been feeling lately: like pond scum. like a junkie, only I don't know what I need a fix of. like a crumpled up wrapper that someone tossed at the barrel, missed and now just keeps getting trod on underfoot, because everybody is too lazy to bend over and pick it up.
so, in general: just awesome.
according to my med tracker -into which I input my symptoms, vital signs, pain map, mood, meds, etc, daily - I'm doing just fine. I guess that goes to show you that there are limits to what computers can do.
It can't, for example, extrapolate from the fact that my pain levels have been at a consistent 8-10 level for the past....year, that my pain is, in fact, out of freaking control. (In fact it reports I have been "stable," which makes me want to strangle it, but it is but a website and has no neck to strangle.)
It can't use the data from my latest migraine - pain level: 9, days lasting (so far): three, meds taken to control it: at least 4, ability to move or live a life that requires doing more than rolling over in bed or taking the hottest shower possible; nil - to confirm that I have become some sort of cave troll, who lives in a twilight world where lights can't be brighter than twinkle lights, movements must all be made in slow motion, and noises can't be above a whisper.
It can take my three month mood average of 'okay' and filter it down into 36 days with at least one episode of tears; 5 days of actual, recorded laughter; at least two days when I felt like talking to people was as painful as pouring acid on myself; but it doesn't seem to register that my definition of an 'okay' mood is seriously lax, because I would've included most of those days in the roster. Or that my much lauded patience is at an all time premium - I have no time for nonsense (or only time for nonsense, I guess) - it depends on who you are and what you want, but if it's stupid, I'm outta there, because ain't nobody got time for that.
It can tell you that my blood sugar's been bloody high - a fact probably influenced by my inability to eat anything that doesn't come in the form of a cookie, potato or cupcake without wanting to throw it back up again. (Don't ask me: carbs are comfort food.) And even then, it's dicey.
It can tell you that my blood pressure's been kooky - per usual, of course - but my pulse has started to join in and beat a crazy rhythm whenever it feels like it. and sometimes I feel like it might just beat right out of my chest, as if it were a separate thing, growing inside of me, its own necessary beat that I cannot control.
Today's a tough day: I know it, as much as I know that these past six months have been hard months, and that - eventually - days won't be so hard, and months will pass without me taking such extreme note of them.
But right now, fighting this maximum migraine and the melancholy mood it has brought with it, everything seems like forever.
As if I am always just those numbers on the stupid chart, and nobody can see past them.
As if I don't remember that there's more to me than those stupid numbers, most of the time. As if that's what I boil down to, in the end. And what a sad end that would be - abnormal numbers and not a lot else.
All I want is to feel better, and I know that part of that is in my power, that there are things I need to do to make myself feel better, (less carbs, for example) but, when you keep trying and you wind up in the same position over and over and over again - and that position is basically curled in a ball on your bed, wishing there was something you could take that would MAKE IT STOP, just for a little while - it's fucking frustrating, is what it is.
I'm working toward my 19th year of chronic illness, and sometimes I feel like I have Got This Shit Down. I know it backwards and forwards and inside out. I can talk to anybody about conserving spoons and living with the ifs/whens and how to fire the doctors that make you feel like garbage and why you should put your pills in those little day packets and why abelism is a bunch of bullshit & you don't have to put up with it, and so, so many other, important, wonderful things. And I'm proud of all of that.
But there are days like today, when it feels as if I have learned nothing, where if feels like I've spent 19 years banging my head against the same fucking wall, and only wound up with a cracked skull for my troubles.
And I just want a break, just want a few days where I can breathe easily, and not worry about what I'll smell and how sick it'll make me. Where I can move without immediately regretting it or hiding how much it hurts. Where I can sleep and wake up rested; feel hunger, eat and then feel full; sit around for hours with people I love and not have to worry about where to plug in the heating pad, or whether or not I should take the next pill if I want to stay put.
It's little things and big things, and today they all feel like big things.
Most of that stuff doesn't matter to me, on an ordinary day, but I guess that's the patience thing again - the person I have the least amount of patience for is myself.
But I know this will pass, so I'm going back to my dark-ish room (even on it's dimmest setting, the laptop is too bright at night), and the soothing voice of Jim Dale as he & I re-traipse the grounds of Hogwarts with our favorite magical trio.
Here's hoping for better days ahead.
Showing posts with label Trying. Show all posts
Showing posts with label Trying. Show all posts
Tuesday, March 12, 2013
Sunday, August 26, 2012
Where am I right now? How is that possible?
I have to remind myself that this is where I am, and this is what I am doing. I am at Grandmother's house, and I am (probably) watching her die. It feels weird to write that, or think that, because, in all honesty, what I am doing is checking my Google Reader for the 1000th time, or blowing things up in a Facebook game, or doing the laundry again, but those things are all part of the larger thing, the filling in time thing. The escaping because it's been three days and all she's eaten is 1/2 a peach and 1/4 of a piece of banana bread. The putting out of your mind that she's been asleep/out of it completely since early Friday morning, and now it is Sunday night and you are listening to her snore from the other room. That "I am deliberately not looking at the bottom right hand corner of my screen to see how long it's been since she's had anything to drink" time needs filling, and thank god for the internet.
Right now, we're in post-crisis, what-the-hell-is-going-to-happen-now mode. On Thursday night, Grandmother ate two helpings of potato salad, and went to bed. Three hours later, she was writhing in pain, a pain in her gut that she couldn't pinpoint, but also couldn't tolerate. After a few more hours of trying in vain to fix it somehow!, I finally convinced her that we should call the hospice people, and the nurse set out from his home, over an hour away: told us which drugs to fish out of her 'comfort kit' and how much to give, and then came to check her out. The drugs did a pretty good job of ending her pain, within an hour, she was resting calmly, sleeping soundly.
That pain: it could be anything, they say. Gas, constipation, just a kink along the way. But they don't think that - you can see that in their faces. "Things could be shutting down", our regular nurse (who is, of course on vacation now, but came in the day before she left to check on Grandmother) gently informs us: "Our job is just to make sure she's as comfortable as possible."
Which feels right, keep her comfortable; but also feels wrong - does that mean keep her drugged? We stopped the pain meds yesterday morning, almost 48 hours ago, because she seemed ok without them: no more moaning or grabbing her abdomen in pain, doubling over. She seemed much improved. But her anxiety level went through the roof, for some reason: she couldn't stop scratching, or flipping from one end of the bed to the other, or yelling at hallucinations of people who were daring to smoke in her room. So we keep giving her the anti-anxiety/delusion meds, because when she gets upset, her breathing, her pulse, her oxygen levels, all of those go crazy (and trying to get her to wear the oxygen is ridiculous when she's like that).
She gets the meds, half of the prescribed dose, really, every 6-8 hours: we've tried twice not to give them, but the result is an hour of her totally freaking out before we give it to her and then an hour afterwards of more freaking out as she starts to wind down.
I can tell Uncle Jack is freaking out - because she was 'fine' (fine for her, fine for her this summer, these past few weeks) just a few days ago, and now she's not eating or drinking, or talking to us with any coherency: did the meds do this? Did we make things worse by trying to help her? The docs say no, that this is what happens sometimes - whatever caused that pain, it's moved beyond that now.
But there's no knowing, and we are both bad with that, with the anxiety that we could be screwing this up so completely. I see Uncle Jack attempting to wake her up again, see if she'll take some Ensure, some Jello, some, something. But she opens her eyes but doesn't really see us, starts talking about getting to graduation and where is her cap?
The hospice people say "you can't do anything wrong, at this point: everything you're doing is the best you can do" but the hospice people are people who know all their patients are dying.
They know about 'making the patient comfortable' and 'keeping the patient calm,' but what do they know about 'my grandmother, who ate 7 meals on Wednesday now won't even take some sips of water'?
Everything we do feels wrong - give her the meds, like the doctor ordered keep her calm, but non-responsive/don't give her the meds to wake her up, watch as her oxygen level falls below 82%, she starts yelling at invisible people and she still won't eat a single thing.
We're trying for the lesser of two evils, I suppose. We're trying.
But there's no right answers here, no cheat sheet: we just want her not to be hurting. We think we've accomplished that, because she's slept through the last three days pretty completely.
We want her to be herself, but can't seem to accomplish that.
We want her to bounce back, for this to be just another example of a time the doctors were wrong about who she is and how strong she fights.
But I want her to be at peace, too, and I know how afraid she is of the forgetting things, how much emotional turmoil she lives through when she thinks about her boys being lost, being little and alone without her.
And, in all honestly, it doesn't matter at all what we want: we just do what we/they/all of us think is best, cross our fingers, and hope it works out.
Only I don't know what to hope for here, and that's a harsh feeling to live with.
So sometimes, sitting here doing the TV Guide crossword puzzle and frowning over the fact that Uncle Jack and I both forgot to eat lunch today, I hear her snort, or see her sit up and reposition herself, and I think: How is it possible that I am sitting here, doing this?
What am I doing exactly?
I'm doing a lot of hand holding and whispering reassuring words, of coaxing her awake, or humming her quietly to sleep*. There's sitting with your hand under her head for the 35 minutes until she's totally asleep, so that your whole arm is asleep and numb as well, and you have to dig it out with your other hand. There's changing her, and the sheets, after an accident, and realizing it's so not a big deal (except for the lifting: god help me, I can't lift her, and I don't know why I keep trying - core muscles are so mad at me, and the fibro flare is ridiculous!). There's letting her sit on your lap when she attempts to get to the bathroom, but runs out of energy along the way, knowing full well that an accident could happen, and not caring in the slightest. There's a lot of sitting around and waiting, measuring meds, looking at the clock, listening for any sounds of alertness or agitation or... anything.
Right now, she's still snoring. And I'm still avoiding the clock, keeping my fingers crossed that when the 6 hour med mark is crossed, this time she'll be ok, and she won't need that next dose. She'll ask for corn on the cob, and we'll give it to her, fresh-picked yesterday morning, from the farmer's market.
Until then, I guess I just wait.
*When the kids were babies I made the each a "quiet music" CD (No-Longer-Youngest Nephew is old enough that his was a cassette tape) that we listened to when it was nap time. Lil Girl's CD has been running through my mind on repeat all weekend, so Grandmother has been treated to some weird versions of "Hushabye Mountain", "Two Sleepy People" and "When She Loved Me".
Right now, we're in post-crisis, what-the-hell-is-going-to-happen-now mode. On Thursday night, Grandmother ate two helpings of potato salad, and went to bed. Three hours later, she was writhing in pain, a pain in her gut that she couldn't pinpoint, but also couldn't tolerate. After a few more hours of trying in vain to fix it somehow!, I finally convinced her that we should call the hospice people, and the nurse set out from his home, over an hour away: told us which drugs to fish out of her 'comfort kit' and how much to give, and then came to check her out. The drugs did a pretty good job of ending her pain, within an hour, she was resting calmly, sleeping soundly.
That pain: it could be anything, they say. Gas, constipation, just a kink along the way. But they don't think that - you can see that in their faces. "Things could be shutting down", our regular nurse (who is, of course on vacation now, but came in the day before she left to check on Grandmother) gently informs us: "Our job is just to make sure she's as comfortable as possible."
Which feels right, keep her comfortable; but also feels wrong - does that mean keep her drugged? We stopped the pain meds yesterday morning, almost 48 hours ago, because she seemed ok without them: no more moaning or grabbing her abdomen in pain, doubling over. She seemed much improved. But her anxiety level went through the roof, for some reason: she couldn't stop scratching, or flipping from one end of the bed to the other, or yelling at hallucinations of people who were daring to smoke in her room. So we keep giving her the anti-anxiety/delusion meds, because when she gets upset, her breathing, her pulse, her oxygen levels, all of those go crazy (and trying to get her to wear the oxygen is ridiculous when she's like that).
She gets the meds, half of the prescribed dose, really, every 6-8 hours: we've tried twice not to give them, but the result is an hour of her totally freaking out before we give it to her and then an hour afterwards of more freaking out as she starts to wind down.
I can tell Uncle Jack is freaking out - because she was 'fine' (fine for her, fine for her this summer, these past few weeks) just a few days ago, and now she's not eating or drinking, or talking to us with any coherency: did the meds do this? Did we make things worse by trying to help her? The docs say no, that this is what happens sometimes - whatever caused that pain, it's moved beyond that now.
But there's no knowing, and we are both bad with that, with the anxiety that we could be screwing this up so completely. I see Uncle Jack attempting to wake her up again, see if she'll take some Ensure, some Jello, some, something. But she opens her eyes but doesn't really see us, starts talking about getting to graduation and where is her cap?
The hospice people say "you can't do anything wrong, at this point: everything you're doing is the best you can do" but the hospice people are people who know all their patients are dying.
They know about 'making the patient comfortable' and 'keeping the patient calm,' but what do they know about 'my grandmother, who ate 7 meals on Wednesday now won't even take some sips of water'?
Everything we do feels wrong - give her the meds, like the doctor ordered keep her calm, but non-responsive/don't give her the meds to wake her up, watch as her oxygen level falls below 82%, she starts yelling at invisible people and she still won't eat a single thing.
We're trying for the lesser of two evils, I suppose. We're trying.
But there's no right answers here, no cheat sheet: we just want her not to be hurting. We think we've accomplished that, because she's slept through the last three days pretty completely.
We want her to be herself, but can't seem to accomplish that.
We want her to bounce back, for this to be just another example of a time the doctors were wrong about who she is and how strong she fights.
But I want her to be at peace, too, and I know how afraid she is of the forgetting things, how much emotional turmoil she lives through when she thinks about her boys being lost, being little and alone without her.
And, in all honestly, it doesn't matter at all what we want: we just do what we/they/all of us think is best, cross our fingers, and hope it works out.
Only I don't know what to hope for here, and that's a harsh feeling to live with.
So sometimes, sitting here doing the TV Guide crossword puzzle and frowning over the fact that Uncle Jack and I both forgot to eat lunch today, I hear her snort, or see her sit up and reposition herself, and I think: How is it possible that I am sitting here, doing this?
What am I doing exactly?
I'm doing a lot of hand holding and whispering reassuring words, of coaxing her awake, or humming her quietly to sleep*. There's sitting with your hand under her head for the 35 minutes until she's totally asleep, so that your whole arm is asleep and numb as well, and you have to dig it out with your other hand. There's changing her, and the sheets, after an accident, and realizing it's so not a big deal (except for the lifting: god help me, I can't lift her, and I don't know why I keep trying - core muscles are so mad at me, and the fibro flare is ridiculous!). There's letting her sit on your lap when she attempts to get to the bathroom, but runs out of energy along the way, knowing full well that an accident could happen, and not caring in the slightest. There's a lot of sitting around and waiting, measuring meds, looking at the clock, listening for any sounds of alertness or agitation or... anything.
Right now, she's still snoring. And I'm still avoiding the clock, keeping my fingers crossed that when the 6 hour med mark is crossed, this time she'll be ok, and she won't need that next dose. She'll ask for corn on the cob, and we'll give it to her, fresh-picked yesterday morning, from the farmer's market.
Until then, I guess I just wait.
*When the kids were babies I made the each a "quiet music" CD (No-Longer-Youngest Nephew is old enough that his was a cassette tape) that we listened to when it was nap time. Lil Girl's CD has been running through my mind on repeat all weekend, so Grandmother has been treated to some weird versions of "Hushabye Mountain", "Two Sleepy People" and "When She Loved Me".
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