You make out to do lists - reorganize linen cupboard, learn two sonnets. You dole out little treats to yourself - slices of ice cream cake, concerts at Wigmore Hall. And then, every once in a while, you wake up... and think I cannot do this anymore. I cannot pull myself together again and spend the next fifteen hours of wakefullness fending off the fact of my own misery."*
Today turned out to not be my best day ever... My original plan was to spend the day shopping with my mom and my sister, maybe have lunch, just be out in the world. (And, not incidentally, away from our house where my dad had declared he would be having a "taking care of me" weekend, the prospect of which is frightening at the very least.) But then my sister didn't feel up to going, so it was just me and my mom, who was in an off mood for whatever reason. But, equipped with lists and coupons and I even remembered to bring my own basket (mine is made of cloth as opposed to the ones in the stores which hurt like hell on my lap), we headed to our first scheduled stop, the craft store.
The store turned out to be wicked crowded and incredibly hot. And about 10 minutes after we got there, I knew that things were going wrong with me: There were a few too many smells, and too much noise, and it was so hot. I started getting weak and bumping into things, and even looking at my list, I was having a hard time concentrating on what I was looking for. I spent a while waiting for my mom to finish up her shopping, and trying not to slide out of the chair or topple over. I don't know why - it just happens like that sometimes. That's one of the things with CFIDS: you can't tell/plan when/why things are going to go to hell. It was so bad I thought I was going to pass out in the store, and waited outside while my mom went through line (she would not approve of that behavior, had she known).
I got the things I needed at the craft store, but between the intense heat and whatever was going on with my body, I was just done. Plum worn out. So instead of a full day of shopping and lunch and being out of the house, we headed home after less than an hour, where I was barely able to crawl back into bed.
A couple of hours of resting and Buffy marathoning later, I was feeling a bit better (less spinning head, more umph), so I turned the computer back on and started checking out the usual haunts. (For the record, those are basically my Reader, my mail, Facebook for chatting, and whatever other tabs I happened to not have finished the last time I signed off.) Reading through my FB activity feed, I see that one of my college friends has a new profile picture up, so I clicked on it.
And there sat nine little children on a couch, posing (as nicely as 9 children under 7 can) for the camera. Nine little children of all the girls I was most friendly with in college, our group of "Alumni Girls." The children of my closest friends, sitting on the couch of one of those friends, about oh 12 minutes down the road from where I am. Which means all of their mothers are sitting there too, and that I was not invited.
And I've missed out on a lot of things over the years - birthday parties and get togethers and weddings and whatnot - and I've not been invited to a few things too, as some of the girls and I hadn't seen each other for years, and grew further apart as time continued to pass. I know that, and, while it's hurt to have to miss things for health reasons, or because I just can't go, I've never really felt unwelcome before, never felt like I was deliberately not included.
Till today.
And I know that's not what it will wind up being - that there's no way anybody thought "Hey, let's not include NTE, because she's such a bitch," or whatever. I know that's not it. The way I figure it either my name never came up because all of my friends were arranging a playdate for their kids, and I don't have any kids, or they just decided not to ask me because the girl whose house it's at is inaccessible to me. So either I was forgotten because I'm not a mom, or I was not asked because they assumed I couldn't make it - but neither of those reasons really makes me feel all that much better.
And looking at that picture, of all those little smiling faces and bald heads and stuffed animals really just reminds me of how much I don't have, of how much I'm missing out on.
I don't have the family, or the kids. And I don't have a bunch of girlfriends that I can just have over to the house (I also don't have) whenever I want. I don't even really have anybody, outside of this computer, who will understand what it's like to not have those things. To want them so badly and just not be able to have them.
To instead be sitting here, with this body that won't even let you go unaided the 6 feet it takes to get into the bathroom, wondering what the fuck happened to the life you were supposed to have. To instead be sitting here in tears staring at nine kids - some of whom you've never even met, and others who call you auntie honorarily - and wishing there was a tenth. Wishing that their moms had thought to call you and say "Sorry you can't make it, but we'll be down the street today, want us to drop by after?" Wishing I'd managed being out in the world for longer than 45 minutes without having to rest for four hours. Wishing I knew how to get from where I am to where I want to be. Wishing I'd never seen the damn picture, and just kept watching Buffy instead, even if it was the one with the praying mantis teacher, and I've seen it 19 times before.
Just wishing.
*Zoe Heller, What Was She Thinking
Saturday, January 29, 2011
Friday, January 28, 2011
Dear Neurologist,
To be honest? I've seen better.
(And yes, I know that EPIC is the computer program they run our medical records on, but it's funnier if I don't.)
(And yes, I know that EPIC is the computer program they run our medical records on, but it's funnier if I don't.)
Wednesday, January 26, 2011
Your biggest challenge isn’t someone else. It’s the ache in your lungs and the burning in your legs, and the voice inside you that yells ‘CAN’T’.
But you don’t listen, you just push harder. And then you hear the voice whisper ‘can’, and you discover that the person you thought you were is no match for the one you really are.” - Author Unknown
I think I need to start a diet - a distraction diet. I keep trying to figure things out: figure out my life, and all the different moving parts that go into it, and I can only concentrate on it for so long before I turn on the tv or pick up a book or wander through my Google Reader. None of which is a bad thing on its own, but when I'm constantly using them to shut off my thoughts, that can't be a good thing, can it?
I'm torn because, on the one hand I feel like it's all too much and utterly overwhelming, so shutting it down for a little bit is a good idea. And on the other I feel like maybe if I just sat with it all for a little while longer - overwhelming or not - I might eventually get to the point where I can figure out how to change something. As it is, once something starts to feel uncomfortable, emotionally, I kind of panic and find something else to focus on as soon as possible. And I don't think that's going to solve anything.
I know that part of it is the physical aspect of it all - if my physical pain is already so high, when something new starts to make itself known - physical or emotional - I try to shut it down so that it doesn't all swamp me at once. But this is only a good short term solution, because it's all still there waiting to be dealt with, and while I am a master at distraction - would you like me to organize your books in color order or find an online recipe for how to make food yummy if you can't have salt? - eventually, it's just me and my babbling brain again at some point.
I don't think anybody likes to sit and be uncomfortable. But I think I need to allow myself to just focus on that a little bit more, because ignoring all my issues is certainly not making them disappear.
There are so many of them, though, and just one of me. Trying to get them to take turns, or to prioritize themselves is also an impossible task, I'm finding. So the more crowded it gets, and the more important things become, and the more I just think "There's too much and I don't know where to start" and turn on the computer instead.
That's why my lists (I told you last week how I wrote lists for hours, right?) are turning out to be so important - if I can break smaller goals down into tiny to do lists, why wouldn't it work for humongous life goals too? It's got to right?
And the first thing on all of those life goal lists? Is going to be figure out what the hell you want to do with your life, because it ain't this.
And even just thinking that, even typing it, makes me want to panic, because, "well, I'm sick and I can't make plans, and the things I really want in life, like a family or a job or a relationship are so SO far from where I am right now, and it's got to be impossible to get from here to there and I don't even have the energy to lift that pile of books that's been sitting on my floor for three weeks so that I can put it away, let alone try to change the whole course of my life." Etc etc. And all that's somewhat true, and all that's very scary, but it's also part of what's keeping me where I don't want to be. I need to try to get past what I keep telling myself is wrong - all those little voices in my head that keep telling me I can't do any of this change thing I want to do so badly, and figure out what things I really can or can't do, if I give it my full attention, my full commitment and my full power.
Yes, I need to be realistic, because there isn't any way in hell I'm running a marathon (although this has never been, and will never be, a goal of mine), or even walking into the next room, right now, but there have to be somethings that I am just too afraid to try and that might possibly work out. I know there are, I can feel them out there, just waiting for me to try for them.
I don't know about physical goals, because my health makes those very dicey, and it's so hard to know which options I should take and which I should pass on. For example, should I start PT again, knowing how badly it went the last three times (major crashes)? Because I'm in a semi-stable state right now, and I have to decide to either a) use that momentum and all of the knowledge I have from my last PT attempts - about how not to push things, and how best to move my body - and hope that it helps this time or b) focus on something else because I don't want things to get worse, and, judging by past results, PT makes things worse. It's a real conundrum, and I don't want to make the wrong decisions, so I just ... don't decide anything and time passes, and nothing changes.
So physical goals are tricky, but I can't let that keep me from setting some. Personal goals are proving to be quite challenging to pin down as well, and the patience other people are always telling me I have seems to abandon me when I am dealing with myself, my own life and issues and problems. But I'm working on it.
I feel overwhelmed, and confused, and stuck, and like every little decision I make is both useless and potentially life changing, all at the same time. But maybe this is how I'm supposed to feel. Maybe figuring things out - major things about what you want your life to mean and how you're going to give it meaning - is supposed to be uncomfortable. I don't believe in the whole "no pain, no gain" maxim, because I've had a whole lot of pain with very little gain in my life, and because adding to that pain seems both irresponsible and ridiculous, but maybe being uncomfortable with who I am for a little while will be beneficial in the end, because it's the only way I'm going to be able to change things. If I continue to look away every time there's something I don't want to face about myself, then nothing is going to change, and nothing is going to get better, and I want things to, so I'm going to just do it as much and as often as I can.
But it's harder than I thought it would be, that's for sure.
I think I need to start a diet - a distraction diet. I keep trying to figure things out: figure out my life, and all the different moving parts that go into it, and I can only concentrate on it for so long before I turn on the tv or pick up a book or wander through my Google Reader. None of which is a bad thing on its own, but when I'm constantly using them to shut off my thoughts, that can't be a good thing, can it?
I'm torn because, on the one hand I feel like it's all too much and utterly overwhelming, so shutting it down for a little bit is a good idea. And on the other I feel like maybe if I just sat with it all for a little while longer - overwhelming or not - I might eventually get to the point where I can figure out how to change something. As it is, once something starts to feel uncomfortable, emotionally, I kind of panic and find something else to focus on as soon as possible. And I don't think that's going to solve anything.
I know that part of it is the physical aspect of it all - if my physical pain is already so high, when something new starts to make itself known - physical or emotional - I try to shut it down so that it doesn't all swamp me at once. But this is only a good short term solution, because it's all still there waiting to be dealt with, and while I am a master at distraction - would you like me to organize your books in color order or find an online recipe for how to make food yummy if you can't have salt? - eventually, it's just me and my babbling brain again at some point.
I don't think anybody likes to sit and be uncomfortable. But I think I need to allow myself to just focus on that a little bit more, because ignoring all my issues is certainly not making them disappear.
There are so many of them, though, and just one of me. Trying to get them to take turns, or to prioritize themselves is also an impossible task, I'm finding. So the more crowded it gets, and the more important things become, and the more I just think "There's too much and I don't know where to start" and turn on the computer instead.
That's why my lists (I told you last week how I wrote lists for hours, right?) are turning out to be so important - if I can break smaller goals down into tiny to do lists, why wouldn't it work for humongous life goals too? It's got to right?
And the first thing on all of those life goal lists? Is going to be figure out what the hell you want to do with your life, because it ain't this.
And even just thinking that, even typing it, makes me want to panic, because, "well, I'm sick and I can't make plans, and the things I really want in life, like a family or a job or a relationship are so SO far from where I am right now, and it's got to be impossible to get from here to there and I don't even have the energy to lift that pile of books that's been sitting on my floor for three weeks so that I can put it away, let alone try to change the whole course of my life." Etc etc. And all that's somewhat true, and all that's very scary, but it's also part of what's keeping me where I don't want to be. I need to try to get past what I keep telling myself is wrong - all those little voices in my head that keep telling me I can't do any of this change thing I want to do so badly, and figure out what things I really can or can't do, if I give it my full attention, my full commitment and my full power.
Yes, I need to be realistic, because there isn't any way in hell I'm running a marathon (although this has never been, and will never be, a goal of mine), or even walking into the next room, right now, but there have to be somethings that I am just too afraid to try and that might possibly work out. I know there are, I can feel them out there, just waiting for me to try for them.
I don't know about physical goals, because my health makes those very dicey, and it's so hard to know which options I should take and which I should pass on. For example, should I start PT again, knowing how badly it went the last three times (major crashes)? Because I'm in a semi-stable state right now, and I have to decide to either a) use that momentum and all of the knowledge I have from my last PT attempts - about how not to push things, and how best to move my body - and hope that it helps this time or b) focus on something else because I don't want things to get worse, and, judging by past results, PT makes things worse. It's a real conundrum, and I don't want to make the wrong decisions, so I just ... don't decide anything and time passes, and nothing changes.
So physical goals are tricky, but I can't let that keep me from setting some. Personal goals are proving to be quite challenging to pin down as well, and the patience other people are always telling me I have seems to abandon me when I am dealing with myself, my own life and issues and problems. But I'm working on it.
I feel overwhelmed, and confused, and stuck, and like every little decision I make is both useless and potentially life changing, all at the same time. But maybe this is how I'm supposed to feel. Maybe figuring things out - major things about what you want your life to mean and how you're going to give it meaning - is supposed to be uncomfortable. I don't believe in the whole "no pain, no gain" maxim, because I've had a whole lot of pain with very little gain in my life, and because adding to that pain seems both irresponsible and ridiculous, but maybe being uncomfortable with who I am for a little while will be beneficial in the end, because it's the only way I'm going to be able to change things. If I continue to look away every time there's something I don't want to face about myself, then nothing is going to change, and nothing is going to get better, and I want things to, so I'm going to just do it as much and as often as I can.
But it's harder than I thought it would be, that's for sure.
Wednesday, January 19, 2011
I mostly never know the date.
If you're a student, you write your name and the date on your paper everyday; if you're working, it's probable that you have deadlines to meet or e-mails to send that have the day stamped right on them; some kind of people even read the paper every morning, and one of the first things it will tell you - once you get past whatever headline is shouting out at you in its largest print - is what day it actually is.
But for people like me - whose numbers I can't be certain of, although I know there are quite a few - people who hardly ever have occasion to change out of their pajamas, or step foot out of their houses, or see other people in real life at all, things can be pretty different. There can be large stretches of time where I consider myself lucky if I remember the day of the week I happen to be inhabiting, let along the exact number it coincides with on the calendar. I've talked to SAHMs, and patients in hospitals or treatment centers, and - on the opposite end of the spectrum - vacationers who have similar issues ("You mean the 22nd is this week?? How the hell did that happen?")and for the most part - aside from having to double check my Google alarms for doctor's appointments and the like - it's not really all that important.
I mean it's like needing to know what time it is in the middle of the night - I could make the effort to roll over, reach my glasses, put them on my face, and check the clock, but is it really worth the bother, since I can plainly see it is still dark enough out to be sleeping time? No, it's most likely not.
So finding out the date generally enters into the same category.
I know when important things are coming up, don't get me wrong: Birthdays and anniversaries and appointments and all that are filed (semi-obsessively, next closest event first) in my brain, but I tend to send things like presents or cards a week ahead of time, knowing that I'll most likely miss out on the exact date and figuring it's better early than late. Judicious use of Facebook friends' birthday notifications, as well as the aforementioned Google alerts and text alarms for appointments keep me - more often than not - where and when I should be.
When SisterK called last night with the news that my Grandmother had had another incident that required a rush to the hospital, I didn't immediately connect the dots.
She had been having leg pain, intense and kind of sudden, and so they called the ambulance, and when she got there they found out she had a lot of clots in her legs. Like, if you clumped them all together, the things they took out of her would form a softball sized mass, kind of lot. As I'm writing this she is thankfully through with her surgery and in the ICU recovering, with the hopes of getting moved to a regular floor tomorrow at some point, but it's still pretty serious because she was on Coumadin, which is a blood thinner, so this should not have been possible. (Of course they've also been messing with her Coumadin dosage since her TIA in September, which was also caused by a clot, so maybe they just haven't gotten it where it needed to be yet: I don't know. I do know the doctor's keep saying how hard Coumadin is to get right, which makes me wonder why we have 17 different forms of hair growing creams but only one acceptable, but completely ridiculous to administer blood thinner, but that's a rant for a different day.)
She's ok, right now, is the point. Resting and recovering.
But there was definitely a little while there that things were more than somewhat tense, and where I spent a lot of time trying to stay calm and calm down other people as I spread the word that things were bad. And then there was the moment that I almost had a complete breakdown: when I turned on the Daily Show for a few distracting laughs, and instead got punched in the gut with the goddamn date.
"January 19th, 2011" rang out the familiar announcer's voice.
And I nearly threw up.
Because January 19th, 2008 was the date that I lost my Nana.
And which I knew was coming up, but didn't realize I had somehow stumbled most of the way through without knowing the actual date. Three years ago today I was home, sick, sitting on my bed in tears, trying to figure out how a person I loved could have just stopped living. How I wouldn't get to see her again, ever.
And here I was, three short years, 5 miles and probably a million "if only's" later, worrying about my other grandmother, and whether or not I'd get to see her again. (We actually had plans for lunch tomorrow). Same date, same sense of dread, same knowledge that sometimes things just don't get better. But - thankfully, blessedly - different outcomes.
She's not out of the woods yet, and (even if she were) she's not in the best of health regardless, so there's still a lot of worrying to do, still a lot of fear to face. But at least THIS day is over, at least THIS date has past.
I miss you, Nana. Today, and every day.
But for people like me - whose numbers I can't be certain of, although I know there are quite a few - people who hardly ever have occasion to change out of their pajamas, or step foot out of their houses, or see other people in real life at all, things can be pretty different. There can be large stretches of time where I consider myself lucky if I remember the day of the week I happen to be inhabiting, let along the exact number it coincides with on the calendar. I've talked to SAHMs, and patients in hospitals or treatment centers, and - on the opposite end of the spectrum - vacationers who have similar issues ("You mean the 22nd is this week?? How the hell did that happen?")and for the most part - aside from having to double check my Google alarms for doctor's appointments and the like - it's not really all that important.
I mean it's like needing to know what time it is in the middle of the night - I could make the effort to roll over, reach my glasses, put them on my face, and check the clock, but is it really worth the bother, since I can plainly see it is still dark enough out to be sleeping time? No, it's most likely not.
So finding out the date generally enters into the same category.
I know when important things are coming up, don't get me wrong: Birthdays and anniversaries and appointments and all that are filed (semi-obsessively, next closest event first) in my brain, but I tend to send things like presents or cards a week ahead of time, knowing that I'll most likely miss out on the exact date and figuring it's better early than late. Judicious use of Facebook friends' birthday notifications, as well as the aforementioned Google alerts and text alarms for appointments keep me - more often than not - where and when I should be.
When SisterK called last night with the news that my Grandmother had had another incident that required a rush to the hospital, I didn't immediately connect the dots.
She had been having leg pain, intense and kind of sudden, and so they called the ambulance, and when she got there they found out she had a lot of clots in her legs. Like, if you clumped them all together, the things they took out of her would form a softball sized mass, kind of lot. As I'm writing this she is thankfully through with her surgery and in the ICU recovering, with the hopes of getting moved to a regular floor tomorrow at some point, but it's still pretty serious because she was on Coumadin, which is a blood thinner, so this should not have been possible. (Of course they've also been messing with her Coumadin dosage since her TIA in September, which was also caused by a clot, so maybe they just haven't gotten it where it needed to be yet: I don't know. I do know the doctor's keep saying how hard Coumadin is to get right, which makes me wonder why we have 17 different forms of hair growing creams but only one acceptable, but completely ridiculous to administer blood thinner, but that's a rant for a different day.)
She's ok, right now, is the point. Resting and recovering.
But there was definitely a little while there that things were more than somewhat tense, and where I spent a lot of time trying to stay calm and calm down other people as I spread the word that things were bad. And then there was the moment that I almost had a complete breakdown: when I turned on the Daily Show for a few distracting laughs, and instead got punched in the gut with the goddamn date.
"January 19th, 2011" rang out the familiar announcer's voice.
And I nearly threw up.
Because January 19th, 2008 was the date that I lost my Nana.
And which I knew was coming up, but didn't realize I had somehow stumbled most of the way through without knowing the actual date. Three years ago today I was home, sick, sitting on my bed in tears, trying to figure out how a person I loved could have just stopped living. How I wouldn't get to see her again, ever.
And here I was, three short years, 5 miles and probably a million "if only's" later, worrying about my other grandmother, and whether or not I'd get to see her again. (We actually had plans for lunch tomorrow). Same date, same sense of dread, same knowledge that sometimes things just don't get better. But - thankfully, blessedly - different outcomes.
She's not out of the woods yet, and (even if she were) she's not in the best of health regardless, so there's still a lot of worrying to do, still a lot of fear to face. But at least THIS day is over, at least THIS date has past.
I miss you, Nana. Today, and every day.
Monday, January 17, 2011
It’s your own sweet self with whom you must rendezvous.*
I spent a lot of time yesterday making lists. Making lists is one of my specialties; I can make a list for any occasion, discussion, event or job - and often do. Yesterday's lists wound up being twelve pages worth of flowcharts and sub-sections, due dates and color-coded keys.
The reason I started making the lists was that I was feeling completely overwhelmed: No matter what I went to do - everything from putting my clothes away to finishing up scrapbook pages had an additional twelve steps that needed to get done before I could even attempt it. Something as seemingly simple as sewing a button onto my winter coat began an unending domino effect of "find the damn needles and thread -> which are still in a box in the cellar somewhere -> I have to get down cellar to go through the boxes till I can find it, but there's snow outside and I have to go outside to get down cellar, which means I can't get downstairs -> so instead just ask someone else to look for the boxes -> but everyone else is doing their own thing already, so now I have to wait for them to have time -> now they are in the cellar, but they can't find the sewing box with the black thread, will pink work -> decide whether or not pink will work on my black wool coat -> Figure that it's not worth it, and continue to go around with an unbuttonable coat in freezing temperatures."
It was all kinds of ridiculous.
So I sat down and started making very detailed lists of all the things that need to happen, according to my full-to-the-brim brain box, relatively soon. Some of the goals were pretty simple, like Stitch the Names on the Christmas Stockings which I have been promising to do for the past three years, but forget as soon as the stockings get packed away with all the other Christmas stuff. This year, I put them in my craft pile, AND they are on my list, so they at least have a shot at getting done. Other simpler tasks include the aforementioned Button Sewing, Putting Pictures on a Camera Card for my mom's digital frame, Hanging up my 2011 Calendar (only 18 days or so late!), and finally get somebody to help me Arrange the Top Shelves of the Bookcases in the Library.
Other goals were more abstract like Have a Comfortable, Usable Bedroom and Be a Better Friend/Family Member, which includes steps like "setting a reminder to make weekly phone calls to people" (because I hate making phone calls, but don't mind it once I'm on the actual phone), and "finally respond to e-mails from three weeks ago". And still other goals are 1000 stepped behemoths that begin with things like "set aside a few hours a week" and end, forty-five arrow lengths later at An Uncluttered and Sensibly Organized Storage Area In The Cellar or Finally Stop Living Out of Boxes .
There are goals that I have to physically do (Call and Make Appointments with Lynne, Zack, and Neurologist ) and goals that rely more on me finally making decisions ( Start Taking New Prescriptions or Call and Say You Don't Want To ). There are goals that have a lot of steps missing, because I am not sure of how to fill them in, most importantly Feel Better and Have Less Pain, but even with out all the intermediate steps, I have starting points for most of these things, something to do or decide or think about that will help me make the next steps.
I didn't realize until I was about 3/4 (and 3 hours) into the process that some of these goals seemed an awful lot like what could be considered New Years Resolutions, even though that certainly was not my goal. Maybe it was the time of year that had so much busyness buzzing around in my brain, but I just needed to get some of it down on paper, get some of it in a place where I could say "Ok, I know that needs to get done, so now I can stop worrying about forgetting it, or never getting to it: It's there, and I'll get to it when I can, one step at a time." And as I was writing the list, and breaking these huge all-encompassing objectives down into their smallest pieces, it made me realize that there were things that I could actually be doing to help me achieve these things. I wouldn't say it made everything less overwhelming (because, hello: please see 12 pages of color-coded lists ), but it certainly made a lot of the stuff seem more doable.
I can't Get all of Last Year's Pictures into Photo Albums today, but I can "label and date a few packages", or "figure out where the extra albums are living". I'm not going to immediately Make Money Selling Extra Stuff , but I can constantly be "weeding out boxes into four piles: Keep Trash Donate and Sell" as I go through them.
And yes, this is not a revolutionary new system of achieving goals that I have created (because if it was, I would please to like my genius check now, thank you), but the same advice those "experts" on tv or in magazines have been giving since they became experts - Break things into managable chunks, or you won't bother doing them. It supposedly works for losing weight, for being organized, for "living the life you deserve," for whatever. I don't know how well it will work for me, in the long run, because I just made my damn lists yesterday, but I will say that it's helped me to think about where I want to wind up, and what kinds of things I can do NOW to help me get there, eventually, someday.
And if there were more blank spaces on the charts then I would have liked (for example, between "talk to Zack" and "start taking wonder drug that fixes everything"), then those are just a part of life - and especially a part of living with chronic illnesses - and I can deal with them when I get there. It's the knowing that I'm in charge of something even if it is as small as "write records request form for Specialist X", that gives me hope, and a sense of control. I might not have any choices about some of the things I have to deal with (hello: Hives; Parents who drink to excess; Living in a house with stairs), but there are still some choices that are only mine to make, and that feels - if totally overwhelming - still pretty damn good.
*Last week's Dear Sugar column
The reason I started making the lists was that I was feeling completely overwhelmed: No matter what I went to do - everything from putting my clothes away to finishing up scrapbook pages had an additional twelve steps that needed to get done before I could even attempt it. Something as seemingly simple as sewing a button onto my winter coat began an unending domino effect of "find the damn needles and thread -> which are still in a box in the cellar somewhere -> I have to get down cellar to go through the boxes till I can find it, but there's snow outside and I have to go outside to get down cellar, which means I can't get downstairs -> so instead just ask someone else to look for the boxes -> but everyone else is doing their own thing already, so now I have to wait for them to have time -> now they are in the cellar, but they can't find the sewing box with the black thread, will pink work -> decide whether or not pink will work on my black wool coat -> Figure that it's not worth it, and continue to go around with an unbuttonable coat in freezing temperatures."
It was all kinds of ridiculous.
So I sat down and started making very detailed lists of all the things that need to happen, according to my full-to-the-brim brain box, relatively soon. Some of the goals were pretty simple, like Stitch the Names on the Christmas Stockings which I have been promising to do for the past three years, but forget as soon as the stockings get packed away with all the other Christmas stuff. This year, I put them in my craft pile, AND they are on my list, so they at least have a shot at getting done. Other simpler tasks include the aforementioned Button Sewing, Putting Pictures on a Camera Card for my mom's digital frame, Hanging up my 2011 Calendar (only 18 days or so late!), and finally get somebody to help me Arrange the Top Shelves of the Bookcases in the Library.
Other goals were more abstract like Have a Comfortable, Usable Bedroom and Be a Better Friend/Family Member, which includes steps like "setting a reminder to make weekly phone calls to people" (because I hate making phone calls, but don't mind it once I'm on the actual phone), and "finally respond to e-mails from three weeks ago". And still other goals are 1000 stepped behemoths that begin with things like "set aside a few hours a week" and end, forty-five arrow lengths later at An Uncluttered and Sensibly Organized Storage Area In The Cellar or Finally Stop Living Out of Boxes .
There are goals that I have to physically do (Call and Make Appointments with Lynne, Zack, and Neurologist ) and goals that rely more on me finally making decisions ( Start Taking New Prescriptions or Call and Say You Don't Want To ). There are goals that have a lot of steps missing, because I am not sure of how to fill them in, most importantly Feel Better and Have Less Pain, but even with out all the intermediate steps, I have starting points for most of these things, something to do or decide or think about that will help me make the next steps.
I didn't realize until I was about 3/4 (and 3 hours) into the process that some of these goals seemed an awful lot like what could be considered New Years Resolutions, even though that certainly was not my goal. Maybe it was the time of year that had so much busyness buzzing around in my brain, but I just needed to get some of it down on paper, get some of it in a place where I could say "Ok, I know that needs to get done, so now I can stop worrying about forgetting it, or never getting to it: It's there, and I'll get to it when I can, one step at a time." And as I was writing the list, and breaking these huge all-encompassing objectives down into their smallest pieces, it made me realize that there were things that I could actually be doing to help me achieve these things. I wouldn't say it made everything less overwhelming (because, hello: please see 12 pages of color-coded lists ), but it certainly made a lot of the stuff seem more doable.
I can't Get all of Last Year's Pictures into Photo Albums today, but I can "label and date a few packages", or "figure out where the extra albums are living". I'm not going to immediately Make Money Selling Extra Stuff , but I can constantly be "weeding out boxes into four piles: Keep Trash Donate and Sell" as I go through them.
And yes, this is not a revolutionary new system of achieving goals that I have created (because if it was, I would please to like my genius check now, thank you), but the same advice those "experts" on tv or in magazines have been giving since they became experts - Break things into managable chunks, or you won't bother doing them. It supposedly works for losing weight, for being organized, for "living the life you deserve," for whatever. I don't know how well it will work for me, in the long run, because I just made my damn lists yesterday, but I will say that it's helped me to think about where I want to wind up, and what kinds of things I can do NOW to help me get there, eventually, someday.
And if there were more blank spaces on the charts then I would have liked (for example, between "talk to Zack" and "start taking wonder drug that fixes everything"), then those are just a part of life - and especially a part of living with chronic illnesses - and I can deal with them when I get there. It's the knowing that I'm in charge of something even if it is as small as "write records request form for Specialist X", that gives me hope, and a sense of control. I might not have any choices about some of the things I have to deal with (hello: Hives; Parents who drink to excess; Living in a house with stairs), but there are still some choices that are only mine to make, and that feels - if totally overwhelming - still pretty damn good.
*Last week's Dear Sugar column
Wednesday, January 12, 2011
Anger.
It's a simple word, but a complex emotion. Something familiar to everybody, but still absolutely unique to each individual. And, I realized quite recently, that it is the main obstacle I've been facing (for the last however long) when it comes to writing anything of substance in this space.
Sure, there's been the holiday havoc, and the shingles before that, and the family members' health crises and the three months away from my own home before that, and about a million other, tiny in comparison, issues that keep cropping up, but I've written through that kind of stuff before - I even sort of wrote through it this time. But more often then not, five years, and a gazillion stories and shared emotions into this blogging thing, lately every time I opened the little Blogger tab on my computer, I would find myself struck - and stuck - with all the things I couldn't say.
All the things I have been so angry about that I can't talk about in person - either because I can't figure out how to say them or because nobody actually hears them no matter how loudly I say it - just sort of clumped up in my brain, letting little drips and drops through here and there, but bottling up most of what could actually be said. And the thing about it was, that I didn't even realize it was anger that was keeping the words from coming until I started to let some of it out. I knew there was something: a wall, a block, a barrier between me and the world - even here in this virtual world - but I couldn't figure out where the wall had come from, or how to take it down.
And I still haven't figured it all out, but over the past few weeks something has been made abundantly clear to me (and probably to those people in my life who are paying any attention at all): I am pissed off.
I am pissed off about so many little things, and so many huge things, and just So. Many. Things. And it has shut me down.
It has turned off the flow of words from my brain to my fingers, so that when I come here to write something, all I can think to say is "Things here are busy/crazy/overwhelming, check back later." But I'm not satisfied with that, so I wind up writing nothing and hoping that you all haven't wandered away due to my inattention.
It's shut down my patience, which I'm supposed to have an unending supply of, because that's what people expect of me - To the extent that on Christmas Day I had to lock myself in my room and cry for ten minutes before I could come out and face people again because they were getting on my nerves so much. And the things they were doing would not ordinarily bother me that much, so I know it wasn't just that they were being assholes (even though they kind of were).
It's shut down my ability to put up with crap: I feel unable to take people's shit anymore, and want them to know and to see it as truth that I Am Done. Even the kids are getting a whole lot more of "does this look like my serious face or my joking face? Because I am not joking and you're going to want to stop it right now." I feel like all of my boundaries have been trampled over and over again so I'm left, walking the lines, retrenching, protecting myself - even if that means being overly sensitive and shooting anyone who comes within sight, deservedly or not.
It's closed of my sense of empathy and sympathy - particularly with myself: I am so upset with myself for being upset that I go around feeling like a heartless bitch and expecting people to treat me as if I am that. (Even though I know I'm not.)
It has also shut down my ability to express emotions with any clarity, in case you couldn't tell from that last paragraph. I keep thinking things like "I'm sad; but why?" or "I am feeling such rage right now, and it is out of proportion to the situation we are in, but I can't tell you why I'm feeling it." And it pisses me off even more when someone says something about it ("You seem tired/upset/not your usual cheery self." No, really: gee thanks.)
'So,' you might ask, if you have made it this far into this unending rant about... everything, 'NTE, why are you so angry?' And that's just the thing - I'm angry about so many things, only a quarter of which I can put an actual label on.
I'm angry with passive-aggressive commentary from my family, the kind that I'm just supposed to shrug off and pretend doesn't hurt me, and I'm angry with myself for making those same kind of remarks to them. I'm angry with my illnesses and doctors and the frustrating lack of ANYTHING that I've been confronted with, yet again, this winter. I'm angry with the ableist/racist/sexist/---ist discussions that take place around me, and that I'm not supposed to get angry at them, because that makes me "holier-than-thou." I'm angry at what a shit year 2010 turned out to be, and all the ridiculous drama that 2011 is already holding for us. I'm angry that I'm not doing more about all the things I know only I can take care of, and I'm angry at people who aren't taking the actions only they can do to fix things. I'm angry that there are situations I can't control, and yet I spend all my time trying to control them. I'm angry about things that shouldn't even enter into my life, on other people's behalf. I'm angry that no one seems to notice I am angry. I'm angry about the fact that nobody else is as angry as (I feel) they should be.
I'm angry with myself, with my body, with my family, with my doctors, with the Internet, with the world. I'm angry at my thoughts and feelings, and the fact that they buzz around in my head and heart and stomach incessantly, but when I try to get them down on paper, they become harder to grasp then vapor.
I'm just angry. Mad, frustrated, ranting, coiled, incensed, enraged, inflamed. All of those. And it's painful to be this angry, and to be keeping it all inside.
So when I finally (and I do mean FINALLY, because I have been feeling this way since, at least September, when my Grandmother had her stroke & I wound up semi-homeless again & my doctor told me that my shingles were stress-related hives instead of Listening To Me)... When I finally realized that this emotion that was bottling everything else up, that was clouding all my other emotions and dulling them to the point where I wasn't even feeling them sometimes, was anger, I decided to let it fly. I'm not keeping it to myself anymore. I'm trying not to aim it indiscriminately or disproportionately, but I'm not keeping it all bound up inside of me anymore.
Which may or may not bode entirely well for this blog and what it might become over the next little while, but I'll tell you one thing it definitely will be -
More honest.
Because part of the reason I haven't been writing all that much is because who wants to hear the ranting of an angry woman, especially if she doesn't even know what she's angry about? Would I keep reading a blog like that? I don't know for sure, and I can't answer it for you either. But I think I would, because it's true. And that's all I ever require in whatever I'm reading... that it come from a true place. And that's all I should require from what I'm writing too.
So if mad is what I'm feeling, mad may be what you get. But at least it'll still be the truth.
Welcome to 2011, everybody, let's hope it gets better from here, and if it doesn't, come join me in being righteously angry... because the only way through it is through it.*
*I can't remember which AA or Al-anon or substance abuse program pamphlet I got that from, and a Google search only shows up random religious theologies, which I know is not where I got it, but it still applies. Or, if you prefer: "If you're going through hell, keep going." Winston Churchill
Sure, there's been the holiday havoc, and the shingles before that, and the family members' health crises and the three months away from my own home before that, and about a million other, tiny in comparison, issues that keep cropping up, but I've written through that kind of stuff before - I even sort of wrote through it this time. But more often then not, five years, and a gazillion stories and shared emotions into this blogging thing, lately every time I opened the little Blogger tab on my computer, I would find myself struck - and stuck - with all the things I couldn't say.
All the things I have been so angry about that I can't talk about in person - either because I can't figure out how to say them or because nobody actually hears them no matter how loudly I say it - just sort of clumped up in my brain, letting little drips and drops through here and there, but bottling up most of what could actually be said. And the thing about it was, that I didn't even realize it was anger that was keeping the words from coming until I started to let some of it out. I knew there was something: a wall, a block, a barrier between me and the world - even here in this virtual world - but I couldn't figure out where the wall had come from, or how to take it down.
And I still haven't figured it all out, but over the past few weeks something has been made abundantly clear to me (and probably to those people in my life who are paying any attention at all): I am pissed off.
I am pissed off about so many little things, and so many huge things, and just So. Many. Things. And it has shut me down.
It has turned off the flow of words from my brain to my fingers, so that when I come here to write something, all I can think to say is "Things here are busy/crazy/overwhelming, check back later." But I'm not satisfied with that, so I wind up writing nothing and hoping that you all haven't wandered away due to my inattention.
It's shut down my patience, which I'm supposed to have an unending supply of, because that's what people expect of me - To the extent that on Christmas Day I had to lock myself in my room and cry for ten minutes before I could come out and face people again because they were getting on my nerves so much. And the things they were doing would not ordinarily bother me that much, so I know it wasn't just that they were being assholes (even though they kind of were).
It's shut down my ability to put up with crap: I feel unable to take people's shit anymore, and want them to know and to see it as truth that I Am Done. Even the kids are getting a whole lot more of "does this look like my serious face or my joking face? Because I am not joking and you're going to want to stop it right now." I feel like all of my boundaries have been trampled over and over again so I'm left, walking the lines, retrenching, protecting myself - even if that means being overly sensitive and shooting anyone who comes within sight, deservedly or not.
It's closed of my sense of empathy and sympathy - particularly with myself: I am so upset with myself for being upset that I go around feeling like a heartless bitch and expecting people to treat me as if I am that. (Even though I know I'm not.)
It has also shut down my ability to express emotions with any clarity, in case you couldn't tell from that last paragraph. I keep thinking things like "I'm sad; but why?" or "I am feeling such rage right now, and it is out of proportion to the situation we are in, but I can't tell you why I'm feeling it." And it pisses me off even more when someone says something about it ("You seem tired/upset/not your usual cheery self." No, really: gee thanks.)
'So,' you might ask, if you have made it this far into this unending rant about... everything, 'NTE, why are you so angry?' And that's just the thing - I'm angry about so many things, only a quarter of which I can put an actual label on.
I'm angry with passive-aggressive commentary from my family, the kind that I'm just supposed to shrug off and pretend doesn't hurt me, and I'm angry with myself for making those same kind of remarks to them. I'm angry with my illnesses and doctors and the frustrating lack of ANYTHING that I've been confronted with, yet again, this winter. I'm angry with the ableist/racist/sexist/---ist discussions that take place around me, and that I'm not supposed to get angry at them, because that makes me "holier-than-thou." I'm angry at what a shit year 2010 turned out to be, and all the ridiculous drama that 2011 is already holding for us. I'm angry that I'm not doing more about all the things I know only I can take care of, and I'm angry at people who aren't taking the actions only they can do to fix things. I'm angry that there are situations I can't control, and yet I spend all my time trying to control them. I'm angry about things that shouldn't even enter into my life, on other people's behalf. I'm angry that no one seems to notice I am angry. I'm angry about the fact that nobody else is as angry as (I feel) they should be.
I'm angry with myself, with my body, with my family, with my doctors, with the Internet, with the world. I'm angry at my thoughts and feelings, and the fact that they buzz around in my head and heart and stomach incessantly, but when I try to get them down on paper, they become harder to grasp then vapor.
I'm just angry. Mad, frustrated, ranting, coiled, incensed, enraged, inflamed. All of those. And it's painful to be this angry, and to be keeping it all inside.
So when I finally (and I do mean FINALLY, because I have been feeling this way since, at least September, when my Grandmother had her stroke & I wound up semi-homeless again & my doctor told me that my shingles were stress-related hives instead of Listening To Me)... When I finally realized that this emotion that was bottling everything else up, that was clouding all my other emotions and dulling them to the point where I wasn't even feeling them sometimes, was anger, I decided to let it fly. I'm not keeping it to myself anymore. I'm trying not to aim it indiscriminately or disproportionately, but I'm not keeping it all bound up inside of me anymore.
Which may or may not bode entirely well for this blog and what it might become over the next little while, but I'll tell you one thing it definitely will be -
More honest.
Because part of the reason I haven't been writing all that much is because who wants to hear the ranting of an angry woman, especially if she doesn't even know what she's angry about? Would I keep reading a blog like that? I don't know for sure, and I can't answer it for you either. But I think I would, because it's true. And that's all I ever require in whatever I'm reading... that it come from a true place. And that's all I should require from what I'm writing too.
So if mad is what I'm feeling, mad may be what you get. But at least it'll still be the truth.
Welcome to 2011, everybody, let's hope it gets better from here, and if it doesn't, come join me in being righteously angry... because the only way through it is through it.*
*I can't remember which AA or Al-anon or substance abuse program pamphlet I got that from, and a Google search only shows up random religious theologies, which I know is not where I got it, but it still applies. Or, if you prefer: "If you're going through hell, keep going." Winston Churchill
Saturday, January 01, 2011
Hi Guys!
Happy Last Day of 2010! Hope all of you had a very Merry Christmas, and that things have been peaceful around you. My day was, as almost all days are, both good and bad. Highs and lows - extreme and within minutes of each other - are no new thing around here, but they can still be ridiculously exhausting, and that is one reason why I didn't manage to post anything in the past week or so.
The gear up for Christmas is so frenetic for me - even if I take it as slow and easy as I can manage, it is still (at the very least) doubling the amount of activity I do every day. But I still love it, no matter how difficult it may be. Plus, I am learning some tricks as I go along: Online shopping? Yes; Malls on a weekend in December? Hells No. Cookie dough made in extra large batches at least a week ahead of baking day? Yes, genius (also make enough for leftovers!); Trying to make every good recipe I have bookmarked in the past year, Definitely not. Trying to organize present opening so that it doesn't resemble the tornado twist of the Tasmanian devil, give you a panic attack, and make it completely unenjoyable? Yes please; Realizing that not everybody wants to play along with that and taking some deep breaths along the way? Completely necessary. It's not perfect, but it's getting there.
And after Christmas this year, here in the Northeast, brought us the extra surprise/complication of a blizzard the next day that left everybody stuck where they were for a day and a half. Which was ok by me, mostly, except that we were supposed to visit Grandmother, who was not feeling well enough to come to our house for Christmas, and we haven't been able to get over there since (because I need the snow shoveling to be done at her house and not just ours). Also, my sister and her boys came down from New Hampshire for their post-Christmas mini-Christmas on Wednesday - they'll be here till Sunday, and in that time we will try to squeeze in the following things: a 1 year old's second first birthday party, a sleepover for at least three kids, and most likely the fourth, come tonight; the ushering out of an old year and welcoming of the new; my mom's 50th birthday for which I have no gift; finally getting over to see Grandmother; a week plus of my dad being on vacation; feeding all those people for however many days there are, plus a group gathering on Saturday, even though nobody's been to the damn grocery store since before Christmas; and probably a partridge in a freaking pear tree.
I am saying that the year is ending as it went along - momentary joys and happinesses (watching all my nephews get along together, talking to my sisters like the adults we supposedly are, sitting here in my rocking chair typing away while everybody else is sound asleep) surrounded on all sides by stress and drama (the most active one year old I have ever met - and considering I worked in two separate day cares, that is saying a lot -, my parents and their drinking - which, I can't even discuss right now else I will lose my calm -, trying to keep a 10 and 14 year old entertained without just plugging them in front of the TV/computer all day, and on and on and on).
Part of the reason I haven't written this week is how busy I am and part of the reason is that I am having a hard time getting geared up for 2011 - I am as jumbled up about that as I seem to be about just about everything right now. I usually like to breathe in a New Year, with all its freshness and possibilities, in huge gulps, but I am not feeling anything new or fresh in my life right at this moment. At this moment, I'm having trouble breathing in anything, let alone basking in hope and optimism about how different and great 2011 is going to be. The number changing doesn't mean my life is going to change, and I am old enough to know that by now. Which doesn't mean that change isn't going to come into my life next year - for sure it is, and it isn't all going to be good. There are worries aplenty on my list and some joys I am counting on to get me through all that worrying - SisterCh's wedding, SisterK's graduation, not to mention LilGirl Tuesdays and Thursdays, or NephewA's sleepovers.
I guess it's that I can feel - I can see coming - so many hard things I am going to have to tackle in the next few months, that I just want to hit the pause button for a few minutes and have a chance to just be before it all comes rushing at me. But that's impossible, and it's all coming no matter what I say, or don't say, so I should just, dive in. Deep breaths, everybody, here we go.
Happy 2011, let's have as much peace as possible.
Happy Last Day of 2010! Hope all of you had a very Merry Christmas, and that things have been peaceful around you. My day was, as almost all days are, both good and bad. Highs and lows - extreme and within minutes of each other - are no new thing around here, but they can still be ridiculously exhausting, and that is one reason why I didn't manage to post anything in the past week or so.
The gear up for Christmas is so frenetic for me - even if I take it as slow and easy as I can manage, it is still (at the very least) doubling the amount of activity I do every day. But I still love it, no matter how difficult it may be. Plus, I am learning some tricks as I go along: Online shopping? Yes; Malls on a weekend in December? Hells No. Cookie dough made in extra large batches at least a week ahead of baking day? Yes, genius (also make enough for leftovers!); Trying to make every good recipe I have bookmarked in the past year, Definitely not. Trying to organize present opening so that it doesn't resemble the tornado twist of the Tasmanian devil, give you a panic attack, and make it completely unenjoyable? Yes please; Realizing that not everybody wants to play along with that and taking some deep breaths along the way? Completely necessary. It's not perfect, but it's getting there.
And after Christmas this year, here in the Northeast, brought us the extra surprise/complication of a blizzard the next day that left everybody stuck where they were for a day and a half. Which was ok by me, mostly, except that we were supposed to visit Grandmother, who was not feeling well enough to come to our house for Christmas, and we haven't been able to get over there since (because I need the snow shoveling to be done at her house and not just ours). Also, my sister and her boys came down from New Hampshire for their post-Christmas mini-Christmas on Wednesday - they'll be here till Sunday, and in that time we will try to squeeze in the following things: a 1 year old's second first birthday party, a sleepover for at least three kids, and most likely the fourth, come tonight; the ushering out of an old year and welcoming of the new; my mom's 50th birthday for which I have no gift; finally getting over to see Grandmother; a week plus of my dad being on vacation; feeding all those people for however many days there are, plus a group gathering on Saturday, even though nobody's been to the damn grocery store since before Christmas; and probably a partridge in a freaking pear tree.
I am saying that the year is ending as it went along - momentary joys and happinesses (watching all my nephews get along together, talking to my sisters like the adults we supposedly are, sitting here in my rocking chair typing away while everybody else is sound asleep) surrounded on all sides by stress and drama (the most active one year old I have ever met - and considering I worked in two separate day cares, that is saying a lot -, my parents and their drinking - which, I can't even discuss right now else I will lose my calm -, trying to keep a 10 and 14 year old entertained without just plugging them in front of the TV/computer all day, and on and on and on).
Part of the reason I haven't written this week is how busy I am and part of the reason is that I am having a hard time getting geared up for 2011 - I am as jumbled up about that as I seem to be about just about everything right now. I usually like to breathe in a New Year, with all its freshness and possibilities, in huge gulps, but I am not feeling anything new or fresh in my life right at this moment. At this moment, I'm having trouble breathing in anything, let alone basking in hope and optimism about how different and great 2011 is going to be. The number changing doesn't mean my life is going to change, and I am old enough to know that by now. Which doesn't mean that change isn't going to come into my life next year - for sure it is, and it isn't all going to be good. There are worries aplenty on my list and some joys I am counting on to get me through all that worrying - SisterCh's wedding, SisterK's graduation, not to mention LilGirl Tuesdays and Thursdays, or NephewA's sleepovers.
I guess it's that I can feel - I can see coming - so many hard things I am going to have to tackle in the next few months, that I just want to hit the pause button for a few minutes and have a chance to just be before it all comes rushing at me. But that's impossible, and it's all coming no matter what I say, or don't say, so I should just, dive in. Deep breaths, everybody, here we go.
Happy 2011, let's have as much peace as possible.
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