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 Hermits. Show all posts
Showing posts with label Hermits. Show all posts
Tuesday, March 12, 2013
Wednesday, April 11, 2012
guess what?
I stopped writing again. And taking pictures. And talking to people outside of my house. And doing anything just for fun. Not all the way - there was some writing, and some fun, and some pictures, but for the most part? I just stopped.
Which, if you've been here any length of time, you might recognize as a sign of Very Bad Things.
And there were some Very Bad Things -
- My grandmother has been getting worse, then better, then worse, then better again for months now, and a very large part of me wants to shut down what I'm doing here at home (which isn't much, to be honest) and move in over there again. If I thought I would be a real help, I would do it in a second. But right now, it's all just question marks, and 'why is she getting worse?' and 'but now she's better so let's forget about figuring out why she was worse: send her home', and so much nonsense.
- I saw a "pain specialist" at the pain clinic that Zack sent me to and he came in the room, looked at me and my chart and said "I have nothing good to tell you and you will leave here disappointed." Disappointed didn't really cover it, though, because, against all of my self protective instincts, I actually go into these things hoping that they'll be able to help (god forbid!), and I left the appointment wanting to set things on fire - my mother said she couldn't think of a good place for a fire, however, which was also disappointing. He told me nothing new, gave me the 'stay the course' speech, and still, by the end, when the nurse came in to give me the 'you can go now' part of the speech, and she was very sweet and conciliatory, I wanted to burst into tears - she knew that he wasn't going to be able to help me, I knew it, Zack knew it. Doesn't matter, for some reason. Still felt like getting kicked in the face, one more time.
- Things around the house have been... I guess awkward is the best descriptor I can think of. The not drinking is going really well (at least in the house: there is an increase in dinners out of the house, just my parents, and I don't believe those are totally sober, but you have to go with what people tell you until they prove otherwise), but it's still awkward. There are things you can't say, places you can't go. And there's still the belief that an apology is enough, which I am not finding to be true. He has said he's sorry, but ... i don't know how to get across to him that he has things in our relationship that need to be repaired, that require effort on his part. He thinks the not drinking should be effort enough, and I am conflicted about whether it is or not. (It feels like it should be, and also that it shouldn't be: that makes no sense at all to anyone but me, I am sure.)
- There's a distinct lack of children. What with all of the kids being in school (or two hours away), there are only weekends and vacations during which I can be around the little people I love. (Also: note to self: there's really only one 'little' person left, and he's two hours away. The kids I see regularly are going to be 6 and 12 (!) in less than a month.) I love that their growing older - the depth of stuff we can do: book signings and museum trips and dollar store challenges - is ever expanding, but I'm also kind of sad that there's no little bits to tuck in for nap time or sing silly songs with. Only Lil Girl came to decorate eggs this week - her big brother was busy playing hockey. It was the first time he was 'too big' for something like that, and there was a definite twinge in my heart area: I do not know what I will do when it's time to visit Santa and he rolls his eyes and says 'no thanks.'
- There's also a distinct lack of my children, and the reality of that perhaps being a permanent situation is starting to feel overwhelming. I know it is not impossible, and I know there's still some time left for that to happen for me, but ... it's not on the horizon, if that makes sense. I can barely function most of the time, healthwise, and I can't see adding the complications of children into the mix. At least not now, and not now, I'm starting to realize, has been going on for at least ten years. It's starting to get to the point of 'if not now, when?' That's a really hard question to answer, for a girl who's always wanted to be a mom, but can't see how that would happen.
- Then there's assorted what the fuck-ery: my SSI getting screwed up (for the second time since December), and having to deal with all the phone calls that entails; this whole diabetes, math at meals thing, which is like torture because there are so! many! numbers! and I hate numbers; all of the stuff that I'm supposed to be doing in the house that isn't getting done; random infections; other family members' health issues; and on and on and on.
So there's been some stuff, is what I'm saying. But not writing about the stuff gets me into trouble, so I'm re-committing (for the Xth time) to writing here more often. At least once a week, hopefully more. About stuff that matters, not just random gobbledegook. So I shall see you all back here, very soon. Till then, be As Well As Possible.
Which, if you've been here any length of time, you might recognize as a sign of Very Bad Things.
And there were some Very Bad Things -
- My grandmother has been getting worse, then better, then worse, then better again for months now, and a very large part of me wants to shut down what I'm doing here at home (which isn't much, to be honest) and move in over there again. If I thought I would be a real help, I would do it in a second. But right now, it's all just question marks, and 'why is she getting worse?' and 'but now she's better so let's forget about figuring out why she was worse: send her home', and so much nonsense.
- I saw a "pain specialist" at the pain clinic that Zack sent me to and he came in the room, looked at me and my chart and said "I have nothing good to tell you and you will leave here disappointed." Disappointed didn't really cover it, though, because, against all of my self protective instincts, I actually go into these things hoping that they'll be able to help (god forbid!), and I left the appointment wanting to set things on fire - my mother said she couldn't think of a good place for a fire, however, which was also disappointing. He told me nothing new, gave me the 'stay the course' speech, and still, by the end, when the nurse came in to give me the 'you can go now' part of the speech, and she was very sweet and conciliatory, I wanted to burst into tears - she knew that he wasn't going to be able to help me, I knew it, Zack knew it. Doesn't matter, for some reason. Still felt like getting kicked in the face, one more time.
- Things around the house have been... I guess awkward is the best descriptor I can think of. The not drinking is going really well (at least in the house: there is an increase in dinners out of the house, just my parents, and I don't believe those are totally sober, but you have to go with what people tell you until they prove otherwise), but it's still awkward. There are things you can't say, places you can't go. And there's still the belief that an apology is enough, which I am not finding to be true. He has said he's sorry, but ... i don't know how to get across to him that he has things in our relationship that need to be repaired, that require effort on his part. He thinks the not drinking should be effort enough, and I am conflicted about whether it is or not. (It feels like it should be, and also that it shouldn't be: that makes no sense at all to anyone but me, I am sure.)
- There's a distinct lack of children. What with all of the kids being in school (or two hours away), there are only weekends and vacations during which I can be around the little people I love. (Also: note to self: there's really only one 'little' person left, and he's two hours away. The kids I see regularly are going to be 6 and 12 (!) in less than a month.) I love that their growing older - the depth of stuff we can do: book signings and museum trips and dollar store challenges - is ever expanding, but I'm also kind of sad that there's no little bits to tuck in for nap time or sing silly songs with. Only Lil Girl came to decorate eggs this week - her big brother was busy playing hockey. It was the first time he was 'too big' for something like that, and there was a definite twinge in my heart area: I do not know what I will do when it's time to visit Santa and he rolls his eyes and says 'no thanks.'
- There's also a distinct lack of my children, and the reality of that perhaps being a permanent situation is starting to feel overwhelming. I know it is not impossible, and I know there's still some time left for that to happen for me, but ... it's not on the horizon, if that makes sense. I can barely function most of the time, healthwise, and I can't see adding the complications of children into the mix. At least not now, and not now, I'm starting to realize, has been going on for at least ten years. It's starting to get to the point of 'if not now, when?' That's a really hard question to answer, for a girl who's always wanted to be a mom, but can't see how that would happen.
- Then there's assorted what the fuck-ery: my SSI getting screwed up (for the second time since December), and having to deal with all the phone calls that entails; this whole diabetes, math at meals thing, which is like torture because there are so! many! numbers! and I hate numbers; all of the stuff that I'm supposed to be doing in the house that isn't getting done; random infections; other family members' health issues; and on and on and on.
So there's been some stuff, is what I'm saying. But not writing about the stuff gets me into trouble, so I'm re-committing (for the Xth time) to writing here more often. At least once a week, hopefully more. About stuff that matters, not just random gobbledegook. So I shall see you all back here, very soon. Till then, be As Well As Possible.
Wednesday, February 17, 2010
"I wanted to run away that day. But you can't run away from your own feet."*
One of the things I've always said about my particular battle with chronic illness is that - for me - it's like having all the downsides of being pregnant, without any of the benefits. When you talk to women about some of the worst side effects they encountered during their pregnancies, you hear a lot of talk about exhaustion (check) or their new aches and pains (check plus). I've known pregnant ladies who found that they were sensitive to odors (check plus), others whose favorite foods were no longer edible (check). There's the nausea (check), the heartburn (check), the weight gain (check), the loss of balance (check), the increase in number or intensity of headaches (check), the insomnia (check plus) and the resulting "mommy brain" (what I like to call brain fog) . I've got all those symptoms (plus bonus symptoms like a ridiculous lack of immune system & muscles weaker than wet noodles), only I don't get to have any of the fun that goes into making a baby or the fabulous new little person to care for afterwords.
For the past little while, I have been in a mood and it hasn't been an exceptionally positive one. For every good thing I do or have, it seems 12 not-so-good things come creeping out of nowhere. For every day I get to give Lil Girl a bath and put her hair in pigtails, I've spent 7 days coughing until there's nothing left to cough up. For every phone call with a friend, I get 5 runarounds with the insurance company (Dear Mass Health: Could you please try to not kill me this year? I'd appreciate it). For every "balentines" cake we make that crumbles into pieces thereby forcing us to eat it with our fingers, I've got 4 straight weeks of not leaving the house except to see a doctor.
I have spent zero days this year without a sinus infection. There were days when it was lessened and I was functioning better, and days when it was worse and I was basically a zombie, but for all 48 days of 2010 I have had a sinus infection. Which is no worse than any other year, really, because I've been sick for at least the past 5594 days, but 48 days without breathing correctly has the power to mess with your mind, let me tell you.
So there's my mood: Complete with grouchiness, confusion and uber-sensitivity. I feel like everything I say is in another language, that I can't make people understand me. I have this sense of (as my sister would say) "Too. Much. Pressure!" that there's a lot of questions and expectations and wants that people are bombarding me with, and I just don't have the energy to deal with them.
I know I'm in trouble when I stop writing. When I stop coming by here to let you all know how things are going, I tend to let myself wallow more. I know I'm in trouble when I stop picking up my camera - when I let the frustration that the damn batteries only last 16 minutes and I have to buy a new damn camera keep me from snapping pictures of sleepovers and Rock Band marathons. I know I'm in trouble when I avoid e-mails and calling people back, because I don't want to have to explain "how I am doing" to anybody, because there's no good answer. I'm doing: but barely. I'm functioning and having a good day or two along the way, but for the most part I just feel stuck.
Stuck and struck by how little of my life I am able to control. By how little my plans count for anything. By how little compassion and empathy there seems to be in my world, in the world.
Even though I can see all of the positives in my life - which I know I have many of - I'm at a point right now where it's getting hard to hold on to them through everything else. It's like there are rare rainbows and even a unicorn or two, but for the most part I'm slogging through a swamp.
And as I am typing this all out, I want to say very clearly that, while I may be depressed (lowercase d), I am also not Depressed (capital D), because I have been Depressed and I know what that feels like. For me, it isn't being unable to hold on to the happiness that's around me, it's being completely unaware that those good things exist in my life... it's being surrounded by positives and being unable to see/feel/experience them. Right now I can still see them, and I can still enjoy them. I probably embrace them even more so than I would if I weren't in this mood, because I crave them so much.
I think that's a good label for the mood I've been in, for what I've been doing: I'm not upset, I'm not depressed or lonely or sad or difficult: I'm craving. I'm craving peace and order and simplicity. I'm craving opportunities to leave the house that don't include someone sticking me with sharp implements. I'm craving time with the people I love that doesn't include me being simultaneously hurt. I'm craving baking that doesn't make me want to throw up & hugs that don't make me want to cry. I'm craving understanding - the kind that comes when you don't have to explain yourself over and over and over again.
And all I can think is how much simpler it would be - and how much happier I would be - if I could just crave ice cream and pickles instead.
*Cloudy with a Chance of Meatballs
For the past little while, I have been in a mood and it hasn't been an exceptionally positive one. For every good thing I do or have, it seems 12 not-so-good things come creeping out of nowhere. For every day I get to give Lil Girl a bath and put her hair in pigtails, I've spent 7 days coughing until there's nothing left to cough up. For every phone call with a friend, I get 5 runarounds with the insurance company (Dear Mass Health: Could you please try to not kill me this year? I'd appreciate it). For every "balentines" cake we make that crumbles into pieces thereby forcing us to eat it with our fingers, I've got 4 straight weeks of not leaving the house except to see a doctor.
I have spent zero days this year without a sinus infection. There were days when it was lessened and I was functioning better, and days when it was worse and I was basically a zombie, but for all 48 days of 2010 I have had a sinus infection. Which is no worse than any other year, really, because I've been sick for at least the past 5594 days, but 48 days without breathing correctly has the power to mess with your mind, let me tell you.
So there's my mood: Complete with grouchiness, confusion and uber-sensitivity. I feel like everything I say is in another language, that I can't make people understand me. I have this sense of (as my sister would say) "Too. Much. Pressure!" that there's a lot of questions and expectations and wants that people are bombarding me with, and I just don't have the energy to deal with them.
I know I'm in trouble when I stop writing. When I stop coming by here to let you all know how things are going, I tend to let myself wallow more. I know I'm in trouble when I stop picking up my camera - when I let the frustration that the damn batteries only last 16 minutes and I have to buy a new damn camera keep me from snapping pictures of sleepovers and Rock Band marathons. I know I'm in trouble when I avoid e-mails and calling people back, because I don't want to have to explain "how I am doing" to anybody, because there's no good answer. I'm doing: but barely. I'm functioning and having a good day or two along the way, but for the most part I just feel stuck.
Stuck and struck by how little of my life I am able to control. By how little my plans count for anything. By how little compassion and empathy there seems to be in my world, in the world.
Even though I can see all of the positives in my life - which I know I have many of - I'm at a point right now where it's getting hard to hold on to them through everything else. It's like there are rare rainbows and even a unicorn or two, but for the most part I'm slogging through a swamp.
And as I am typing this all out, I want to say very clearly that, while I may be depressed (lowercase d), I am also not Depressed (capital D), because I have been Depressed and I know what that feels like. For me, it isn't being unable to hold on to the happiness that's around me, it's being completely unaware that those good things exist in my life... it's being surrounded by positives and being unable to see/feel/experience them. Right now I can still see them, and I can still enjoy them. I probably embrace them even more so than I would if I weren't in this mood, because I crave them so much.
I think that's a good label for the mood I've been in, for what I've been doing: I'm not upset, I'm not depressed or lonely or sad or difficult: I'm craving. I'm craving peace and order and simplicity. I'm craving opportunities to leave the house that don't include someone sticking me with sharp implements. I'm craving time with the people I love that doesn't include me being simultaneously hurt. I'm craving baking that doesn't make me want to throw up & hugs that don't make me want to cry. I'm craving understanding - the kind that comes when you don't have to explain yourself over and over and over again.
And all I can think is how much simpler it would be - and how much happier I would be - if I could just crave ice cream and pickles instead.
*Cloudy with a Chance of Meatballs
Sunday, October 04, 2009
I've had the house to myself this weekend (and, when I say weekend, I say after Saturday at 6 pm, because the people in my house never get anywhere on time), and I think I like it.
Sure it's quiet, and there's nobody to talk to, but I really don't feel like talking anyways, so it's all good.
Here are some things I did that I couldn't ordinarily do:
Not too much, really. No orgies, to the disappointment of some corrupt family members. No parties, because I am not 17 and this is not a movie from 1986. Nothing reckless (although I was sorely tempted to try the shower on my own, even I am not that stupid) or even really that interesting. Just a little alone time, which is hard for me as far as taking care of myself physically (argh - why is there so much eating that has to be done?), but I think it was something that helped me take care of myself emotionally. I don't know about you, but I start to get a little growly if there are always people around. And closing my door doesn't always close out the rest of the house, so it was just a nice little break from what passes for normal around here.
How's your weekend going?
Sure it's quiet, and there's nobody to talk to, but I really don't feel like talking anyways, so it's all good.
Here are some things I did that I couldn't ordinarily do:
- I tried eggs, which I used to love and then about 9 years ago, all of the sudden started hating. To the point of gagging when I smelled them, kind of hate. (I think it had something to do with baking a cake with the kids at school one day, and one of them cracking open a rotten egg, right into the cake mix. Obviously we started over, but the damage was done.) But lately, I've been making a lot of eggs - scrambled eggs are Lil Girl's go-to meal, and fried eggs on toast are Youngest Nephew's, so there was a lot of egg making this summer. And the last couple of times I've made them, I found myself thinking "A little salt, some toast and bacon, and that yolk might actually be yummy," which is a big improvement over having to sing a song to distract myself from the fact that I was cooking eggs. But I haven't been brave enough to try them, the way I like them. There's just still an 'ick' factor. But this morning I figured, what the hell - I'll make them, and if I don't like them, there isn't anybody around to pester me into trying them a different way, or asking me why I don't like them, or to rail at me about wasting food. (Yes: I don't like to waste food either, but one egg isn't going to kill anybody.) Besides, it's not a waste - it's an experiment. Yeah, so - experiment concluded: FAIL. ALL CAPS FAIL. Still do not like eggs.
- I threw up. (See #1)
- I listened to the radio for two days straight: WERS' weekend line up is awesome. Including the Playground, just for nostalgia points. As quietly or loudly as I wanted to, not competing with anyone else's music or television or voices.
- I scrapped and semi-organized my scrap stuff, commandeering the table, the floors, the chairs and just leaving it all there overnight because I wasn't done. (Ordinarily, people would want to, you know, walk or sit or something, and I'd have had to put it all away and start over in the morning.)
- I kept the door open all night, which I never do, because Jebus forfend that I should actually be in some form of near sleep and hear someone in another part of the house: death to them! But with nobody here to make noise, I figured what the heck.
- I kept the porch light on all night, which is slightly paranoid. I didn't want to have to flip it on if somebody rang the bell, because then they would know someone was home and I would have to answer the door. This way, if I didn't want to answer the door, I didn't have to, but I could still see who it was. (And yes, the doorbell actually did ring twice this weekend: Once was the delivery guy who brought me disgusting food (see #2) and the other time was a guy Dad works with whose mother is our neighbor. He brought us cookies his wife had made. I will answer the door for cookies ANYTIME.)
Not too much, really. No orgies, to the disappointment of some corrupt family members. No parties, because I am not 17 and this is not a movie from 1986. Nothing reckless (although I was sorely tempted to try the shower on my own, even I am not that stupid) or even really that interesting. Just a little alone time, which is hard for me as far as taking care of myself physically (argh - why is there so much eating that has to be done?), but I think it was something that helped me take care of myself emotionally. I don't know about you, but I start to get a little growly if there are always people around. And closing my door doesn't always close out the rest of the house, so it was just a nice little break from what passes for normal around here.
How's your weekend going?
Tuesday, June 30, 2009
Bring on the new month
Ok, so June - as far as this blog goes - was pretty much filled with suck. I tried a lot, but accomplished very little. (Very little meaning things like, oh, still having your freaking CHRISTMAS banner up the top there, with it's little snowflakes and such. It is such a good thing I do not have my own house - I would be the annoying neighbors who never take down their twinkle lights.)
We all know the reasons - feeling like shit, still being at my grandmother's house, a full 2 months after everyone else has moved into the house that I'm actually supposed to be living at (I do not say 'my' house, because it in noway feels like 'my' house), just general chaos and craziness and blah feeling - so I'm not going to go over them again right now, but I kind of just decided that I'm going to attempt another NaBloPoMo type thing, and try to post something everysingleday for the month of July.
The reasons being that I tend to feel less like crap if I've taken the time out of my day to say something to y'all - even if that something is just a quick "Hey: feeling like crap, so no real post today" type of post. Plus I've got a backlog of pictures and good quotes, and random things from around the webiverse, so I can always post some of those... it's about taking the time, I think.
So, there it is, in blue and white (are my words still blue? Holy jebus I need to get crackin on a new template.): come back tomorrow for something new.
Even if it's just a hello.
We all know the reasons - feeling like shit, still being at my grandmother's house, a full 2 months after everyone else has moved into the house that I'm actually supposed to be living at (I do not say 'my' house, because it in noway feels like 'my' house), just general chaos and craziness and blah feeling - so I'm not going to go over them again right now, but I kind of just decided that I'm going to attempt another NaBloPoMo type thing, and try to post something everysingleday for the month of July.
The reasons being that I tend to feel less like crap if I've taken the time out of my day to say something to y'all - even if that something is just a quick "Hey: feeling like crap, so no real post today" type of post. Plus I've got a backlog of pictures and good quotes, and random things from around the webiverse, so I can always post some of those... it's about taking the time, I think.
So, there it is, in blue and white (are my words still blue? Holy jebus I need to get crackin on a new template.): come back tomorrow for something new.
Even if it's just a hello.
Saturday, June 20, 2009
A little bit on the whiny side, I'm sorry to say.
Every phone call with my mother ends the same way now: with her telling me about the work that's still not done, and me trying to think of something to say that isn't twisted and harsh and bitter.
I don't like it, and I know it's not her fault that things are moving so slowly, and I know that I am lucky to have a place to be that is safe and warm and where I am loved and I know it's just stupid & useless to feel sorry for myself, but I do.
I feel like I don't have a place.
I just don't belong anywhere -
As much as I love it here, and spending time with my grandmother and sister and uncle is amazing and wonderful and great;
As much as I know that Mum and Dad are working and painting and scraping and getting estimates 4 days out of the week;
As much as I know that this is all temporary and eventually, there'll be a house I can get in and out of, with a brand new cozy bed I just paid a lot of money for, and a bathtub I can take showers in and a kitchen I can cook in and a room where I can let the kids just play and not have to worry about them breaking something that's 115 years old or waking somebody up from a much needed nap.
As much as all that is true, right now?
At this moment?
I feel ...like those days are still too far away.
like I've overstayed my welcome, no matter what they say
like nobody who's supposed to care, actually cares enough to do the things that I can't do for myself. Or to find out how I'm doing, or to even think that I might be upset by the way things are playing out.
And, wow, am I upset.
I'm angry, even.
I'm shocked at how angry I am - that people can't be trusted to do even the simplest things, that time keeps passing, that I'm so useless, that I keep getting worse, that nobody seems to be worried besides me. I'm angry at myself, and I'm angry at just about everybody else.
Not all the time, not even most of the time... but today. Today I am.
I know it's because I'm feeling so much worse, and because the longer I stay here the harder it gets to pretend I'm still ok, and because the harder it is to pretend, the more I cause the people here to worry, or to go out of their way, and the more I feel like a big fat burden.
And also? Because I am just so sick of pretending.
I'm at the point where I can't hide the fact that I get tired halfway through making a sandwich and have to lay down for 3 hours. At the point where wearing a bra 24 hours a day - for modesty's sake - is no longer an option (hell, most days, it's not even an option to put it on at all) and I almost don't even care that they know I haven't taken a shower in almost 2 weeks. At the point where they can see that I save every last drop of energy for those two days when the Lil Girl (&/or her big brother) is here, and the rest of the time recuperating.
It's all the little stuff that doesn't matter when I'm at home, that matters big time here. And it only matters because I let it: I know that my grandmother doesn't think any less of me because I have greasy hair, or that my uncle is going to be thinking I'm lazy because I just can't clean up those dishes I left in the sink.
But I'm not without pride. I don't like people, even the people closest to me, to know how much I can't do, to see how much help I need to make it through the day. It's not a choice, though, when I'm staying here. It feels like all of my flaws, all of my faults and failures, are on display, all day, everyday.
And even though this rant is full of angst and all 'poor me', I know it'll pass soon. I'm already embarrassed that I even wrote it, because reading it back for errors makes me sound petty and like I don't appreciate all I have. I do. I really do.
But I'm not going to pretend it never happened, I'm not going to keep on pretending, at least here, that I'm not bothered by the fact that I still have no home. Or the fact that the majority (not all, but most) of my siblings have only contacted me in the past two months when they needed me to do something for them, and then promptly forgot that I exist. Or the fact that, at 30 years old, I have to constantly eat food I don't like because I can't just fix my own or watch the news b/c if I don't stay in the living room till 11:00, I'll cause people to worry.
I'm going to give myself this space to not have to bite my tongue or to not have to use my "I'm totally fine and can socialize like a normal person" voice.
And then I'm going to take a deep breath and open the door again, and try to convince my uncle that he'd really just like to order a pizza tonight.
As always, thanks for listening.
I don't like it, and I know it's not her fault that things are moving so slowly, and I know that I am lucky to have a place to be that is safe and warm and where I am loved and I know it's just stupid & useless to feel sorry for myself, but I do.
I feel like I don't have a place.
I just don't belong anywhere -
As much as I love it here, and spending time with my grandmother and sister and uncle is amazing and wonderful and great;
As much as I know that Mum and Dad are working and painting and scraping and getting estimates 4 days out of the week;
As much as I know that this is all temporary and eventually, there'll be a house I can get in and out of, with a brand new cozy bed I just paid a lot of money for, and a bathtub I can take showers in and a kitchen I can cook in and a room where I can let the kids just play and not have to worry about them breaking something that's 115 years old or waking somebody up from a much needed nap.
As much as all that is true, right now?
At this moment?
I feel ...like those days are still too far away.
like I've overstayed my welcome, no matter what they say
like nobody who's supposed to care, actually cares enough to do the things that I can't do for myself. Or to find out how I'm doing, or to even think that I might be upset by the way things are playing out.
And, wow, am I upset.
I'm angry, even.
I'm shocked at how angry I am - that people can't be trusted to do even the simplest things, that time keeps passing, that I'm so useless, that I keep getting worse, that nobody seems to be worried besides me. I'm angry at myself, and I'm angry at just about everybody else.
Not all the time, not even most of the time... but today. Today I am.
I know it's because I'm feeling so much worse, and because the longer I stay here the harder it gets to pretend I'm still ok, and because the harder it is to pretend, the more I cause the people here to worry, or to go out of their way, and the more I feel like a big fat burden.
And also? Because I am just so sick of pretending.
I'm at the point where I can't hide the fact that I get tired halfway through making a sandwich and have to lay down for 3 hours. At the point where wearing a bra 24 hours a day - for modesty's sake - is no longer an option (hell, most days, it's not even an option to put it on at all) and I almost don't even care that they know I haven't taken a shower in almost 2 weeks. At the point where they can see that I save every last drop of energy for those two days when the Lil Girl (&/or her big brother) is here, and the rest of the time recuperating.
It's all the little stuff that doesn't matter when I'm at home, that matters big time here. And it only matters because I let it: I know that my grandmother doesn't think any less of me because I have greasy hair, or that my uncle is going to be thinking I'm lazy because I just can't clean up those dishes I left in the sink.
But I'm not without pride. I don't like people, even the people closest to me, to know how much I can't do, to see how much help I need to make it through the day. It's not a choice, though, when I'm staying here. It feels like all of my flaws, all of my faults and failures, are on display, all day, everyday.
And even though this rant is full of angst and all 'poor me', I know it'll pass soon. I'm already embarrassed that I even wrote it, because reading it back for errors makes me sound petty and like I don't appreciate all I have. I do. I really do.
But I'm not going to pretend it never happened, I'm not going to keep on pretending, at least here, that I'm not bothered by the fact that I still have no home. Or the fact that the majority (not all, but most) of my siblings have only contacted me in the past two months when they needed me to do something for them, and then promptly forgot that I exist. Or the fact that, at 30 years old, I have to constantly eat food I don't like because I can't just fix my own or watch the news b/c if I don't stay in the living room till 11:00, I'll cause people to worry.
I'm going to give myself this space to not have to bite my tongue or to not have to use my "I'm totally fine and can socialize like a normal person" voice.
And then I'm going to take a deep breath and open the door again, and try to convince my uncle that he'd really just like to order a pizza tonight.
As always, thanks for listening.
Tuesday, March 03, 2009
Words of Wisdom
I spend way too much time thinking about the past. I remember the me that used to be, the me that told people everything, that had a wide circle of friends I could call, in tears, whenever I needed to, and I wonder when I closed myself off, I wonder if this is just part of growing up, growing old, or if there’s really something wrong with me now and I wonder what I’d have to do to let other people in again.
From Princess Nebraska
One of the greatest challenges of living with a chronic illness is the sense of isolation it can bring. It can be devastating to suddenly (or not so suddenly, depending on the situation)find yourself in a place where nobody else seems to understand, where you have nothing in common with those around you, where you are left facing an illness - and all of its many challenges - on your own. I was 15 when my illness changed my life forever, and almost immediately, I began to feel disconnected from my friends and peers - but by experience rather than time or distance.
In high school I was different because I didn't date or go to parties. I never drank or smoked pot (big deals at my high school, anyways), I couldn't drive, & I didn't skip classes because I knew I'd need the sick days for actual sickness. I missed the prime gossip hours - lunch, study hall, walking home from school - because I only showed up to go to classes, and then went home and crashed, or I was homeschooled (when things were really bad). I had to stop dancing, and those 'friends' disappeared from my life immediately - I can remember showing up to the next year's recital - the recitals I had previously felt like I owned, the recital where I was supposed to finally have earned the right to a solo - and feeling like an intruder, feeling worthless & forgotten. I had no enemies, and managed to maintain one or two close friends, but we still had spaces between us - inside jokes I didn't understand anymore, trips I couldn't take, heartbreaks I couldn't nurse them through with cookie dough and sleepovers.
During college, things were much better - living on campus brought me independence, brought me a community of girls who bonded with me over papers and boredom, the frenzy of finals and the loathing of lesson plans. I loved them, and they loved me, and they somehow - amazingly, to me, it seemed - managed to understand who I was and that I wasn't just this weird combination of illnesses. But there were still things that branded me as an outsider - I went home on the weekends because the sensory overload in the dorms was too much for me. I didn't have boyfriends who broke my heart or hangovers that lasted two days. My wheelchair accessible dorm was fine, but the student center, the theater were the plays were held, the alumni center were committees were formed were all off limits to me. When my friends would plan their birthday parties, they'd always include a stop by my room: we'd take pictures, I'd give them my gift, they'd preen, I'd send them off for a night on the town. These pictures are bittersweet to me now - having friends who cared enough to come by at all is sometimes overshadowed by the fact that they were on their way to a night full of fun and I was on my way to bed. (4 years of college and maybe 17 pictures, all following the same pattern - the group of us sitting on my bed in my dorm room, them dressed to the nines and me in my pjs.)
After we graduated, the gap began to widen again: my friends started getting married almost immediately, a few of them had kids right away, and they all had jobs. They all got jobs and husbands, eventually homes and kids. I wound up with doctor's appointments, random rare diseases, a datebook filled with medical tests; fabulous kids that I play auntie to, but who go home at the end of the day, and the same twin bed I've had since I was 16.
(I know that there's more to my life than that last sentence, I'm just trying to make a point about the gap I've been feeling lately.)
"What are you doing now?" "Where do you work?" "Are you seeing anyone?" These are all routine questions, to which I have very un-routine answers (at least for my age group). Most almost 30 year-olds work. Most almost 30 year-olds date or are in serious relationships. A lot of them have kids, mortgages, cars to buy, bills to pay. I do have a lot: this isn't about that. I know I have a lot to be grateful for, a lot of happiness inducing, valuable people in my life, a lot of interesting & intriguing ways I spend my time... this post isn't about me feeling sorry for myself (or, at least it's not meant to be), it's about how hard it is to be connected, to stay connected to people you care about when you have so little in common.
It's about how strange it feels to have no 'real' answer to everyday questions - when you're friended on Facebook by an old acquaintance who asks how you are and what you're doing now.... why it's so difficult not to just skirt the truth, to not want to just make up some better, more acceptable answer. It may be a necessity that I'm not working, it may even be a blessing that I am able to devote so much of my life to being with the people I love, but that doesn't make it easier to say that I don't have a job because I'm too ill to work right now.
It's about how left behind you begin to feel when all of your friends are doing adult things - hell, when you're little sisters are doing adult things - and you still feel like you're living the same life you were living 12 years ago. I did go to college - it was a challenge I am so proud of myself for conquering - but I got so sick afterwards that I couldn't put it to use, and now, 8 years later, I'm still here, still stuck. So it's hard to be the one to pick up the phone and call one of the girls from college and say "Hey, come and visit me: let me just let my parents know first."
The Internet - particularly the blogosphere - has been really helpful for me with all of this, helping me to find new peers, to connect to other people like me. Peer groups need not be just by age, after all - having friends of all ages who can understand your experiences can be vital too: I've bonded with readers, with photographers, with aunties, with other young adults with chronic illness. Having people who have faced some of the same challenges in connecting with the 'real' world, who feel the same sort of disconnect has been really important for me and has, at times, kept me from becoming completely isolated from non-family people. It's one of the things I like best about the blogosphere - there seems to be no end of blogs written by outsiders, by the non-cool kids, by the uncliqued masses (Sure, there's some clique-y-ness every now and then, but by and large.) I have made real, true friends online, and I never expected the blessing of that.
It's just that lately, I've been feeling this disconnect between me and my IRL friends pretty keenly: there's been a rash of pregnancies - and second pregnancies when I've never met the first baby in person; my oldest friend (I'm talking 2nd grade here people) is getting married in October and I've yet to meet her fiance, even though they've been dating for 3 years; I'm finding out secondhand & after the fact that there are parties, shindigs,& get togethers that I would usually be invited to (and have to decline) that I never knew about (and I honestly don't know which is worse: the having to decline or the not getting the opportunity to)... It just feels like I haven't put enough effort into these relationships, and they are crumbling around me.
Think about your own life - think about the best friend you lost touch with after high school ended, the acquaintance you used to send a Christmas card to until you just forgot one year, the woman from your kid's little league games that you talked to 3 days a week and now never see - and about how easy it is to lose those ties. Now think about how much easier it would be to lose the connection if one of your friends hardly ever left her house - how quickly you might get sick of inviting her places if she always says no, how awkward you might start to feel about letting her know the good things that were going on in your life if you think she's got very few positive things in hers, how rapidly life runs away with you so that you never have a moment to sit down and put the fact that you're thinking about her into action.
I've been really good at keeping up virtually - I always send birthday cards (almost always on time); I comment on their kids' pictures & send presents signed 'honorary auntie NTE'; I pledge money when they run marathons and donate to the 'in lieu of flower' organization of their family's choice if someone they love passes away. But I can count on one hand the number of times I've actually been in the same room with most of them (excepting Best Friend/College Roommate) in the past 8 years.
So I've been thinking about how to do better at this, and I think the key is not to wait. Not to wait until I feel 'better' enough, not to wait until I feel like I've got more interesting things going on. I'm so horrible at this (we've talked about how I hate the phone. And how I am actually shy in real life and get embarrassed really easily and on and on and on) but I'm going to try not to let myself make excuses. I'm going to write an e-mail this week to at least one friend and see if she can't carve out some time for me. And then I'll carve out some time for her.
Because I do need those people in my life that I can call when I'm sad and need cheering up, that I would answer the phone for even in the middle of an un-Tivoed, brand new episode of The Office, that I get to see the engagement rings of and rub the pregnant bellies of. Because I think I am a good friend, and that's not something I'm willing to put on hold any longer.
Friday, December 05, 2008
In case you are not lucky enough
to have a 2 1/2 year old in your life, let me explain what it is like.
It is like having a tiny, constant narrator to your life/day. It doesn't matter what you are doing, it will need to be said:
"You are eating breakfast?"
"You will take your medicine?"
"You gonna go potty?" (and, of course, "I come in wit chu.")
"You come play wit me now?"
"We play Care Bears. You be Grumpy."
"I'm playing Playdoh!"
There's questions, statements, exclamations, and a million different attitudes and variations, but no matter what you are doing, it will need to be said.
Many, many times.
If you have just said "I'm going to get the cars," then she will feel compelled to repeat that statement in the form of a question: "You goina get da cars?"
If you ask a question, "What are we going to do with this mess?" It will need to be repeated before it can be answered: "Whats we goin to do wit dis mess? We has to clean it up, da mess we made."
There will be orders: "You don't look at me!" and inquiries "Whats dat? Whatz dis? Where's she goin? Why she's doin that?" and chit chat aplenty, and it's all developmentally normal, and wonderful for all sorts of excellent reasons (vocabulary building, skill building, curiosity factor as an element of learning and growth, blah de blah about educational philosophy and all that here), but sometimes? You'd just like to do some ordinary something (let's say... going to the bathroom), without all of the constant chatter.
Who wants to watch the director's commentary before they've had a chance to actually enjoy the movie? Who needs someone to point out to an entire store full of people that, yes, you did actually just trip over absolutely nothing and almost knock down a display?
Most days, the "yiddle" one's loquaciousness is charming, a part of her that I wouldn't change for anything. Today? I just wanted to pee in peace.
It is like having a tiny, constant narrator to your life/day. It doesn't matter what you are doing, it will need to be said:
"You are eating breakfast?"
"You will take your medicine?"
"You gonna go potty?" (and, of course, "I come in wit chu.")
"You come play wit me now?"
"We play Care Bears. You be Grumpy."
"I'm playing Playdoh!"
There's questions, statements, exclamations, and a million different attitudes and variations, but no matter what you are doing, it will need to be said.
Many, many times.
If you have just said "I'm going to get the cars," then she will feel compelled to repeat that statement in the form of a question: "You goina get da cars?"
If you ask a question, "What are we going to do with this mess?" It will need to be repeated before it can be answered: "Whats we goin to do wit dis mess? We has to clean it up, da mess we made."
There will be orders: "You don't look at me!" and inquiries "Whats dat? Whatz dis? Where's she goin? Why she's doin that?" and chit chat aplenty, and it's all developmentally normal, and wonderful for all sorts of excellent reasons (vocabulary building, skill building, curiosity factor as an element of learning and growth, blah de blah about educational philosophy and all that here), but sometimes? You'd just like to do some ordinary something (let's say... going to the bathroom), without all of the constant chatter.
Who wants to watch the director's commentary before they've had a chance to actually enjoy the movie? Who needs someone to point out to an entire store full of people that, yes, you did actually just trip over absolutely nothing and almost knock down a display?
Most days, the "yiddle" one's loquaciousness is charming, a part of her that I wouldn't change for anything. Today? I just wanted to pee in peace.
Tuesday, December 02, 2008
Today I gave myself a time out
After a week filled with people coming and going, food that needed baking, children that needed minding (and reminding), nights that needed filling (as sleep was largely absent) and a whole lot of stuff that still needs to get done - and with an upcoming week that looks scheduled to the extreme as well, I came home from my grandmother's house today to find that Dad - who is on vacation this week and can't seem to stay on my good side when it comes to smells - had washed the kitchen floor (with barcolene), put up a new plastic (and odoriferous) shower curtain, and washed all the windows (with Windex!) That's three horrific smells all bundled together, and I nearly threw up - and then I nearly threw a fit.
Struggling to breathe - and not to cry - I decided I had had enough, and went in my room and shut the door. It was a little after 3, which is twilight around here this time of year, so I put some Christmas music on shuffle, the heating pads on high, and my head on the pillow.
I just laid here, in the dark: rotating every few minutes to relieve pressure on the sorest points and get heat onto a few different points, hitting the next key on my remote, during the volume up and down as I willed it. And I thought. I thought about all the things that have gone wrong since this time last year, and all the things that have gone right. I thought about how I don't know where we'll all be next month, let alone next Christmas. I thought about all of the issues that need to be dealt with within my family, and how I just don't want to be the person who has to deal with them any more. I thought about all the excuses, all the explanations; all the avoidances & all the annoyances. I thought about all the things we'd hoped for this year, and all the ways we've failed: all the ways I wanted my life to be different at this point, and all the ways I haven't managed to change it.
Basically, I laid around in a lot of pain, feeling sorry for myself, and figuring I deserved it.
And I did. I deserve to feel badly for all the things that haven't gone right - to mourn all of the losses we've accumulated. It's not out of line to have myself a little pity party when I've just come back from writing thank you notes to all the people who showed up at my uncle's funeral, to a house that's uninhabitable to me and people who get pissed off because they think they are helping when they are so obviously doing the opposite.
It's been a bad year, in a lot of ways. And the bad times? They don't look like they're especially ready to let up. So, ok: lay in the dark and feel sad for a little bit. Roll over and over with tears running down the sides of your face as you listen to songs that are supposed to be cheery. That's OK, that's alright, you're only human.
But then you have to look at all you've got, too: you have to get to the point where you're ready to say "Yeah, that really sucked. And it'll probably still suck tomorrow, too, but you can do it anyways."
And that's OK too. Because I know I can do it. Because as much as the people I love drive me crazy (and They Do. The End.), we're in this together. Because as much as it sucks that I feel this bad, I've felt worse. Because there is, at this very moment, some person in a lab coat looking at my blood and thinking 'WTF?', and a few years ago they weren't even doing that. Because as much as it's true that I'm nowhere near where I wanted to be at this point in my life, I've still got the chance, I've still got time & hope & opportunities.
So I'm going to remember to give myself some time outs in the next few weeks, as the always overwhelming holiday season interacts with grief and chaos to produce an even more stressful time for all of us. And if laying in the dark for a while with my brain shut off *as much as is possible for me* is what it takes to get through it, then that's what I'm going to do.
Struggling to breathe - and not to cry - I decided I had had enough, and went in my room and shut the door. It was a little after 3, which is twilight around here this time of year, so I put some Christmas music on shuffle, the heating pads on high, and my head on the pillow.
I just laid here, in the dark: rotating every few minutes to relieve pressure on the sorest points and get heat onto a few different points, hitting the next key on my remote, during the volume up and down as I willed it. And I thought. I thought about all the things that have gone wrong since this time last year, and all the things that have gone right. I thought about how I don't know where we'll all be next month, let alone next Christmas. I thought about all of the issues that need to be dealt with within my family, and how I just don't want to be the person who has to deal with them any more. I thought about all the excuses, all the explanations; all the avoidances & all the annoyances. I thought about all the things we'd hoped for this year, and all the ways we've failed: all the ways I wanted my life to be different at this point, and all the ways I haven't managed to change it.
Basically, I laid around in a lot of pain, feeling sorry for myself, and figuring I deserved it.
And I did. I deserve to feel badly for all the things that haven't gone right - to mourn all of the losses we've accumulated. It's not out of line to have myself a little pity party when I've just come back from writing thank you notes to all the people who showed up at my uncle's funeral, to a house that's uninhabitable to me and people who get pissed off because they think they are helping when they are so obviously doing the opposite.
It's been a bad year, in a lot of ways. And the bad times? They don't look like they're especially ready to let up. So, ok: lay in the dark and feel sad for a little bit. Roll over and over with tears running down the sides of your face as you listen to songs that are supposed to be cheery. That's OK, that's alright, you're only human.
But then you have to look at all you've got, too: you have to get to the point where you're ready to say "Yeah, that really sucked. And it'll probably still suck tomorrow, too, but you can do it anyways."
And that's OK too. Because I know I can do it. Because as much as the people I love drive me crazy (and They Do. The End.), we're in this together. Because as much as it sucks that I feel this bad, I've felt worse. Because there is, at this very moment, some person in a lab coat looking at my blood and thinking 'WTF?', and a few years ago they weren't even doing that. Because as much as it's true that I'm nowhere near where I wanted to be at this point in my life, I've still got the chance, I've still got time & hope & opportunities.
So I'm going to remember to give myself some time outs in the next few weeks, as the always overwhelming holiday season interacts with grief and chaos to produce an even more stressful time for all of us. And if laying in the dark for a while with my brain shut off *as much as is possible for me* is what it takes to get through it, then that's what I'm going to do.
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