Friday, October 24, 2008


National Blog Publishing Month is coming up, fast and sure: I'm going to commit to it, because I know I can do it(2 years running, baby!)... and since I'm hitting publish here, I don't have to waste any more time deciding whether or not I'm participating. I'm in: something (lord knows what) will be published here everyday in the month of November.

Decision made. I'm totally the decider.
I am afraid to sleep. Or, more accurately, I am afraid of the kind of 'sleeping' I've been doing for the past few years. It is a horrible, non-sleeping type of sleep.

It's hard to explain, really, how complicated my sleeping life is. (Some people have complicated social lives, others have complicated sex lives: I have a complicated sleep life. You can probably just shoot me now.)

My sleep life consists of a diabolically complex combination of insomnia and half-sleep, exhaustion and extreme pain. The pain and the exhaustion, pretty easily explained: multiple chronic illnesses, see just about any other post. The other two? Not so much...

First off, there's the horrible, insanely ironic insomnia that comes part and parcel with CFIDS/FM: Having excessive fatigue and an inability to sleep makes perfect sense in some world, just not the one we currently live in. So there will be months upon months were I spend all night looking at the dark, when I hold my breath until those glorious 45 minutes between when the kids next door finally go into the school and the next church bells chime - those 45 minutes seem to be my golden time for sleep, the only real time I can almost guarantee I will be able to close my eyes for a while. The fact that these 45 minutes occur after 8 in the morning does not help to make the nights shorter, I can assure you.

Trying to sleep, dragging myself through the long night listening to calm music, or the sound of the clock ticking, or the absolute quiet that comes from shoving the clock in the closet under a pile of clothes - I've come to really hate that part of my life. I hate the waiting; I hate the games I play on the computer trying to waste the time, the lists I make that I know I'll never get around to. I hate all my pillows, and how they're not soft enough; my bed and how it's not wide enough; my covers and the way I have to keep dragging them onto the bed like an ever errant dress train. I hate how dark it gets, and how it's starting to get dark earlier, as if to say "Night is coming, and you will be alone, again, waiting." I hate when it starts to get light out, and I know I've passed yet another night with only the faintest of brushes with sleep.

Night is really the worst time, because it's just me, and the knowledge that I should be asleep; the want, urge, and compulsion to be asleep; and all the right equipment for sleeping - and yet no sleep.

Even worse than the insomnia, though, is the aforementioned half-sleep. Although it's really more like 1/4 sleep or 3/4 sleep: the so-close-and-yet-so-far sleep. It reminds me of those times that you're exhausted enough to be trying to nap in class, but you can hear the teacher droning on in the background and you're still mostly awake. You're alert enough to know not to turn your backpack into a pillow or let yourself start to snore or drool. You're awake, but in that kind of hazy half-asleep world, and you want to cross over to full sleep, but you know you can't.

It's snooze-button-sleep: It isn't refreshing or relaxing at all. It's full of anxiety and broken dreams. And it leaves me more exhausted than when I started, and certainly not ready to greet a new day.

It's so frustrating to have your head on the pillow, your knees curled up tight, your hip tilted just so and ... nothing happens. While you're waiting, your neck starts hurting more, so you shift and now it's that spot on your back that you can't put pressure on, or the imprint of your sweatpants pocket in your leg, or one side of your body is boiling hot and the other is ice cold.

My sleep is neither restful nor peaceful, and oh how I miss the way it used to be: the way I know it's supposed to be. Just shutting down, tuning out, unplugging, instead of being in this constant half charged, hyperly aware unsleep.

There's a part of me that thinks I've used up all my sleeping: all those early years of illness where I slept 18 -20 hours a day, for months at a time, hoping to actually wake up and feel rested, feel ready. (I'm still waiting, still hoping.) Those periods where I slept at dinner tables, bus stops, dance classes - I used up my allotment of sleep and now there's nothing left for me to use. I don't actually believe this, but during the long nights it is hard to remember that sleep doesn't work that way.

But, if I knew how it worked, than I wouldn't have written this post.

Friday, October 17, 2008


Hey guys: I've got my very first ever Guest Post up today at the lovely Christina's Momology... come on over and check it out, will ya?

Wednesday, October 15, 2008

You think you're ok and then you pour yourself a cup of tea and burst into tears.

This weekend I had my first time alone in the house in, well... forever, really. At least years. Between needing help with stuff and the fact that there's so many of us, alone time hasn't exactly been all that available. (And other people are even more screwed, because I hardly ever leave the house for more than a couple of hours.)

Anyways, I was really, really alone for a substantial amount of time: 2 days, all to myself. I was so looking forward to it... sometimes being 29 and living at home is NOT the adventure it might be advertised as.

Mum & Dad were away overnight, SisterCh went to her boyfriend's for the weekend, there was a PUS or two upstairs, but I refuse to acknowledge their existence, so they don't count. It was just me.

But halfway through the first day on my own, around 3 o'clock or so, I started to get this itchy scratchy feeling, and I just ... couldn't figure it out. I felt ... restless and uncomfortable, and emotional for no reason.

And I didn't really understand why it was I was feeling so weird, at first: I often have time when the house is mostly empty... when Mum & Dad go north for their cigarettes, when everybody is gone to the North End for a feast, or to open houses. So blocks of a couple of hours where it's just me are not unheard of.

I stopped what I was doing, checked for the mail, went out to the kitchen, and made myself a late lunch. I was listening to my radio program, nice and quietly, nothing blasting (because that's the way I like it), fussing with the stupid kettle, because it's hard for me to pick up and pour (at least to pour accurately), and I really wanted a cup of tea.

As I finished making my sandwich and cutting up my sour pickle, I poured the hot water onto the tea bag, the smell of the tea hit me, and :wham: my breath just caught in my throat.

And then I realized what the feeling was, what was so 'off' about my day: No Nana.

A little part of me had been waiting for her to come down looking for her mail, wrapped up tight in her bathrobe, cup of tea in one hand, portable phone in the other, complaining about the cold, or the PUS, or coming over to steal a slice of my pickle.

And I sat there drinking my cup of tea, thinking of Nana (who was all about the tea) tears streaming down my face, as I realized this was the first time I'd been alone in the house, really, truly alone, in a very long time.

And I realized that while I mostly think I'm doing ok, sometimes it just comes out of nowhere - that feeling of "how is this real?", how is she gone? 9 months later, and I still don't believe it all the way... there are still times when I pick up the phone to call and invite her to go shopping with us; times when I hear the fighting start upstairs and my stomach reflexively tightens with fear - will I have to call the cops this time - before I remember she's not there anymore and I don't have to protect her (and they can rip each other to pieces for all I care); times when I automatically turn on her shows before I remember that she's not coming in to watch them and I can pick what I want to watch (and even more times that I watch her shows anyways, because who wants to have to catch up on a new show?); times when I can almost believe that she's at school, or out with her friends, or even still in the hospital.

And I know it's not true, but I'm surprised, still, by how much it can hurt.

Especially because on the day to day, I think I'm doing fine. I think I'm coping with all the crap that's going on, and doing a damn good job of it. But then I'm alone for a little while, and the smell of tea does me in. And I know it takes time, it was just... unexpected.

I don't know that I felt better afterwards, exactly, but I did feel like at least I knew what the problem was, why I was on edge. (I hate feeling wrong and not being able to figure out why.)

In an odd coincidence, I finished writing this post last night, and turned on the Tivo. Then I watched watched this week's episode of True Blood (which, if you don't watch it, is very good, if a bit graphic), and the following scene got me started all over again.

It was a deja vu-ish moment for me, I'll tell you.

Spoiler Alert... plot points discussed below, not vital ones, especially, but if you haven't watched this week's episode, stop reading here.

In this scene, the main character, Sookie (who's name is pronounced suck-y; although I still think it should be sue-key, rhymes with cookie)'s grandmother has just been murdered. This is after the wake and the disastrous funeral, and she's alone in the house, with a pie her grandmother had baked. Her last pie. I'm sure you'll see what I'm talking about.

Sometimes, it's just too real.
(Although I can assure you, I do not cry as gracefully as that.)

Monday, October 13, 2008

We may be overdoing it a bit...

Since I've been lucky enough to be an Auntie, as far back as Oldest Nephew (who just turned 12!), one of my favorite things to do with our kiddos has been introducing them to things I love. Getting to expose them to the joys of reading or poetry; to watch their faces when a science experiment goes off without a hitch; to let them use the expensive stickers and see the pride they have in what they've created - it's just one of the best things in my life.

When it comes to TV & movies, I've been lucky enough to hook Youngest Nephew on Indiana Jones & the Dinosaurs TV show, to scare Oldest Nephew with a great white shark, and to re experience the joys (and cringe at some of the realities, but that's another post) of the Disney universe through the eyes of all three of them.

Lil Girl is only here 2 days a week right now, but she's been slowly shortening the amount of time she'll nap, little by little every other week or so, leaving us with a nice chunk of morning time to do something restful and quiet like watching a movie. The rule is one movie, or one hour of TV, total for the day, which Lil Girl doesn't like at all, as the TV is constantly on at her house, but I can't use it as background noise like they do, because background noise makes me want to claw my ears off.

During the past few weeks, we've been slowly working our way through our Disney catalogue, starting with Ariel because she's got an old Ariel figurine that used to be SisterCh's. We went from Ariel to Cinderella, bounced over to Peter Pan & Aladdin, did a little Monster's Inc. (I forgot how cute Boo is!) & Toy Story; sat through the beginning of 101 Dalmatians 3 times, and, most recently, dug out Beauty and the Beast from its hiding place. We also have a ton of Disney books, so she's read a lot of the stories, even if she hasn't seen them on screen yet.

But, while playing with some more of those old action figures this week, I got a little hint that we may be bombarding her with a few too many story lines.

She had her Aladdin figure in one hand and I asked her what happened if I rubbed on his magic lamp.

Apparently, when you rub Aladdin's lamp, a "Crocodile comes out and eats off your hand, like Captain Hook."

Not exactly the Genie I was hoping for, but thanks for the fair warning, kiddo.

This is My Best Shot Monday post, head on over to Mother May I for a bunch more.

Friday, October 10, 2008

I broke a mirror the other day,

and still haven't decided if I am superstitious enough to really care. (Although I guess that's my answer: mostly, I figure I don't recall breaking enough mirrors in early childhood to have lasted me this long already, and so one more can't really hurt.)

But Lil Bit was here (and the reason the mirror broke, as it was save that or save her), and I had to quickly scoop up the pieces and get them in the trash. But now I kind of wish I hadn't... all those spiderwebby cracks to nowhere, all those refractions and angles of light: it would've made for some great pictures. I wonder if it's worth the additional 7 years to just find one and take a hammer to it?

Anybody else having issues with Bloglines?

I've got a ton of those annoying red exclamation points, and blogs that I know have new posts are not showing up as updated... hmm... curiouser and curiouser. Just wondering if it's me and my stupid computer, or if it's them.

Happy Thanksgiving to my Canadian friends, by the by. Since it's, you know, 3 in the morning, that's about all the fabulousness I've got in me... it's kinda sad.

Anyways... let me know if your bloglines is screwing with you too, will you? Appreciate it.

Monday, October 06, 2008

Me too.

Some days, Lil Girl and I seem to wear each other out more than normal: everything I say bounces around her as if it were no more important to her than the traffic report, her energy level is high to manic, and her chosen activities are randomly designed for maximum mess and noise, minimum actual enjoyment. Napping is for suckers, eating is for babies: of which she is NOT ONE!!, and clothes are made for changing in and out of. For my part, there are just days that are worse healthwise, energywise, pain wise. Unfortunately, we managed to combine a bunch of our issues together last week, and had a heck of a day. Lil Girl has learned to say "I hate..." (which I totally fell into the trap of paying attention to, and now have to work harder to ignore, because if I pay attention she just says it all the more, like a curse), and she spent a lot of the day grumbling about everything from books to baths (she couldn't find one, and didn't want the other). Both of us seemed to be losing the last vestiges of our patience, and so I decided, since it was still nice enough out and the sun was going down: "Let's talk a little walk."

Our walks are short and sweet: we head to the end of our block, cross the big street and head back towards the house. We stop in front of the church for some running around space, and because the kids like to climb the stairs or walk the balance beam (depending on which other adults are with us, obviously). Lil Girl took Grammy's hand, then let it go. She had us "freeze" on command and forgot to reciprocate. But the fresh air was doing us all good, it was relaxing and something different than being stuck in the house all day. This is the picture I managed to get before the little one decided she'd had enough and wanted to go play Care Bears (again).... I think it says a lot about how our day went.

I understand exactly, sweetie. I'm soo there with you. Tomorrow will be better.

Don't forget to go on over to Mother May I for some more Best Shot Mondays.

Sunday, October 05, 2008

Hey, if I wrote it on time,

even ahead of time, that counts, right? So, here's my blog-oversary post, a week (or two) late.

If you can believe it, my blog is 3 years old! I'm as surprised as you are (if only because it means this laptop that has given me sooo many problems is 3 1/2 and I ready to throw it out the window already). My very first post was a mess and a half, through no fault of my own, and hopefully things have improved since then.

It's been a busy three years, as far as my computer skills go: I've learned basic - maybe even a quarter of a step above basic - html, designed my own masthead (which I want to change again), & blogged 30 days in a row, two years in a row. I still don't understand half of what my statcounter is purporting to tell me, but I did figure out how to tell how everybody is getting here, which has been enjoyable. I also figured out how to post pictures - and a flickr badge! - and found some amazing blogs to help me learn how to take better pictures.

I've done some memes, been most pleasantly surprised to receive an award or two, and been included in a few carnivals, and some time in the near future I'm going to guest post on someone else's blog for the first time! It's all been so exciting, so important to me.

I'm exceptionally proud of the work I've done for Blogging Against Disabilism Day, CFIDS & FM awareness, and my ability to randomly proclaim things.

Looking back, I'd certainly rather have had less PUS posts (as I would certainly rather have less PUS, but as we get going towards finding a new place to live, that is a goal much closer within reach, thankfully); I know there are times when I need a blogging break, and that it's cost me some readers over the years; I wish I was better at remembering I've started a draft and actually finishing it (72! 72 Drafts?? C'mon, NTE, you can do better); and I know there are some things that need tweaking (like the color of the hyperlink text, which is nearly identical to the regular text), but overall, I'm just so glad to have this place, this space to be me. To think aloud and have these discussions with all of you.

And I'm more grateful than I can say that you come by, comment, and care.

Thank you, so, so much.

Wednesday, October 01, 2008

Books I've read (today) and now you must too

After a particularly crappy few days, there is nothing better than reading a good book (or two, or three...)
A phone call that cost me $300 and a computer that refuses to load AOL (I know: but I've been on AOL since 1997. Also, I have 6500 emails in my saved folder. I keep promising myself as soon as I clean that out I can switch to something else. But I haven't yet.) started my day off not so fabulously.

But then I galloped & scurried my way through two excellent childrens books, and now my mood is much improved.

First I picked up Clementine by Sara Pennypacker, which arrived only yesterday, and was, therefore, the handiest book in the room. As soon as I read this dedication by the illustrator, Marla Frazee, I knew I was in for a treat: "To my big brother, Mark Frazee, who thinks I'm an idiot." C'mon now - if that doesn't make you laugh, then you are an only child.

Clementine reminds me of all the books I read when I was in fourth grade: The Ingalls girls, the Babysitters that never seemed to do much babysitting, even some of those dopey R. L. Stine heroines. Most of all, she reminded me of Ramona Quimby, a personal favorite of mine, who never seemed to realize she was heading for trouble in time to stop, and who made everyday seem exciting, even if she just wound up getting punished, because at least she'd done something worth getting punished over. In that way, Clementine and Ramona would have been best friends, had their two book worlds ever collided.

Everyone around her seems to think that Clementine's problem is that she doesn't pay attention, but the real problem is that nobody else is paying as much attention as she is. She pays attention to every.little.thing, but it never seems to be the things she's supposed to be paying attention to. The book covers one week in Clementine's life - although I just found out there are two additional books in the series, so yay! - and if this one week is anything to go by, Clementine my just be the most exciting person to be near, ever.

Best of all though? She's hilarious. You know me, if a book is funny, I will read it. Even if the plot is slow or meanders, even if the action is weak or the heroine is to meek and mild, I will read it just for the funny. Fortunately, this book has a strong plot, a fabulous heroine, great supporting characters (including a best friend with strict rules, two loving, caring parents, and a little brother who needs a vegetable name - which Clementine is, of course, happy to provide), and awesome illustrations. Most of all though, it's got the funny. I will give you a sample of some of Clementine's words of wisdom, because I know that some of you don't understand that reading childrens books is not just for children, and I may have to coax you into it a little bit. We've had this argument before, people, (see Harry Potter Posts) but I am willing to continue until I convince you.

"But I couldn't tell them this, because an important part of pretending to be asleep is not talking."

"But I didn't spin him again, because he throws up on the second ride and somebody has to clean it up which is N-O-T, not me. This is called Being Responsible."

"She scrubbed so hard she probably made a hole right through my head skin and my head bone, and now everybody can see right into my brains and I'd better not do any more cartwheels."

and my favorite, although a bit longer, is this interaction between Clementine and her principal:

"I can't help it," I said, before she could start the little chat. "I'm allergic to sitting still."

"Nobody is allergic to sitting still, Clementine," she said.

"I am," I said. "My brother is allergic to peanuts. If he eats one he gets all itchy and swelled up and he can't breathe right. If I try to sit still I get all itchy and swelled up and I can't breathe right. So that means I'm allergic to sitting still."

Mrs. Rice squeezed her eyes shut and rubbed her forehead. I happen to know this means This idea is so bad it's giving me a headache, because it's the face I make when my mother tells me to visit Mrs. Jacobi. The face never works for me."

Hilarious, no? There's nothing better than when a character thinks like you think, and Clementine could've been hatched in my 8-yr-old brain (I know this because I still often think that way).

The second book I picked up, oh 2 years ago? and finally read this morning because I know they're making a movie out of it and if I see the movie first, it'll ruin the book for me. (The inverse is not true, however: don't ask me why.) The Tale of Despereaux is a book about the power of stories, the power of love and the power of soup.

The main character, Desperaux, is a mouse of small stature, few mouse-like instincts, and very little importance in his family or community. He does not behave as a mouse should, he does not look like a mouse should, and he does not know why he should want to do either of those things. Instead of nibbling on books, he reads them. Instead of cowering from noise, he explores it. Instead of fearing humans, he falls in love with one. And that is where his story intersects with those of a princess, a serving girl, and a rat whose broken heart mended incorrectly.

It's full of action and adventure, plot twists and poignancy. I can't imagine that a reader - be they 8 (like Youngest Nephew who will be getting this book for Christmas) or 28 (which is close enough to how old I am) - would walk away unsatisfied by this book. It's about interconnectedness, bravery, and what it means to be true to yourself, but it's about all of those things without being preachy or heavy handed, and remains entertaining from beginning to end.

So there are two, not exactly brand new, recommendations for childrens books you should read. There are very few people who can't use a good dose of what good childrens literature can provide: a laugh, a little compassion, empathy, & understanding; conflicts and conflict resolutions; engaging characters, smart dialogue; and best of all they're QUICK and Easy to Read. So pick up a book, marketed to children, today. Because there's a lot of great stuff out there, and if you just pass by it thinking "that's for kids", you're really missing out.

Besides, if you happen to have kids in your life, you can always tell yourself that you're reading it before you pass it on to them to make sure it's appropriate. Which, you should always do! Because a) some things are not appropriate for your particular child and b) if you know what your kid is reading than you can talk about it together, which is just a fabulous thing. The only thing better than reading a great book is sharing that great book with somebody else: I promise.