Having a bedtime

I know we've talked about my CFS-related insomnia before, but it's tearing off little pieces of my life right now, so I'm going to talk about it again.  Feel free to move along: probably the only thing worse than listening to someone tell you random half-stories about their dreams is listening to someone ranting about how they're not sleeping.  Which is exactly what I'm going to do right now.

For the past few months, I'd thought my insomnia might be improving.  It was tiny steps like closing my eyes and not opening them again every 36 seconds, or fading out during a show and realizing that I'd missed more than one set of commercials that made me start to think "holy shit: I was actually asleep there for a few minutes!", and led me to hope that maybe, just maybe, this cycle of painsomnia was letting up.  I did all the things you're supposed to do to create an 'optimal sleeping environment' (as my sleep specialist likes to call it): gave myself a strict bedtime (midnight: anything earlier than that was too depressing, and made nights seem endless) at which point I shut off all electrical appliances - TV and lights off, computer shut, etc - opened the window a little bit (because your room should be slightly chilly to help you sleep), and increased the number of hot showers I was taking (because there's something about hot showers and your body gradually cooling itself that is supposed to be helpful with sleeping).  All the little tricks I knew that helped me, I put into effect - Initiate Operation SLEEP NOW PLEASE!!

And the thing is, maybe that all seems like common sense to you, but to somebody like me, it's also kind of scary.  Sleep is kind of scary.  Because there was a time (I was going to say 'not too long ago,' but then I counted back and it's close to ten years, so I guess that was a while ago) where sleeping was all I could do.  Sleep was as involuntary then as not sleeping is now and it consumed my whole life.  I had to schedule my classes  around when I could nap; I slept through people's birthday parties and graduations, my own prom and more than one family activity.  I would wake up exhausted (so, basically no difference there), even though I had slept for 8 hours, 10 hours, 14, or 17 hours.  My whole life was sleep based (again, no difference, just now it's based on the fact that sleep won't come), and there was nothing I could do without first balancing it out with hours of sleep in my mental ledger: 2 hours of class, then an hour nap.  1 day of student teaching, a 1/2 hour nap at lunch and then a four hour nap back at the dorms.  Best friend's getting married, stay up till 1:00 (even though everybody else went out afterwards and stayed up till 7), sleep for a day and a half until your mother wakes you up, worried that you've not eaten in 36 hours.

That's how all encompassing sleep was for me, before the switch flipped and insomnia took its place.  So while I long for sleep - long for it with the "I will sell you my immortal soul" type of desperation only other insomniacs can truly appreciate - I'm still pretty afraid that my body will flip the switch in the other direction, and I'll once again transform into some sort of Rip Van Winkle-tte.  So taking steps to improve my sleep is one of those double edged swords you're always hearing about - you know, the only kind that's really useful, but you take a large chance that you'll get stabbed by it in the process.

Unfortunately. those few good signs have all but dried up again, and my commitment to creating a sleep Utopia flew out the window right after them.  Even if I shut everything down at midnight, I've more than likely turned it all back on again by 1 - my patience for tossing and turning is at an all time low, and every wrinkle in the sheet seems mountainous and villainous, and I start debating whether or not I could create enough of a spark with my heating pad to set the whole damn thing on fire, or if the mattress will fit through my window, should I decide to pitch it out there.  Evil NTE comes out at night and dreams up ways to curse the entire sleeping world, or super-empathetic NTE takes over and spends all night watching documentaries about the saddest people who've ever existed in the universe.  (Side note - If I am Youtube surfing at night, no matter how seemingly innocent a search I have started off with, I will -without fail- somehow wind up on a clip that will make me bawl.  I started out watching old songs from Sesame Street (1-2-3-4-5-6-7-8-9-10-11-12 Ladybugs, at the ladybug picnic), and ended up watching Big Bird sing at Jim Henson's memorial service, at which point, my eyes were swollen shut, and I decided that was as close to sleep as I was going to get, and closed the computer.)

I saw someone use the term Painsomnia (on the Twitter, I think), and it was like "Hello word: I'm so glad someone has created you because you are exactly what I have been trying to say for ten years, but couldn't."  Painsomnia is exactly right, because if I wasn't all Princess & the Pea because of the stupid fibromyalgia, I might be able to get 15 consecutive minutes of sleep in, and I wouldn't be here, again, ranting about the fact that I didn't sleep last night.  I wouldn't be in complete zombie mode today, after 4 really tough nights, during which I saw every minute of the sunrise, and tried to translate the morning birdsong into English.  (I think the robin who lives in my neighbor's tree is very upset about the 2012 political scene.  Maybe.)  

But I'm re-initiating the bedtime tonight, because it feels like the thing to do.  Maybe it'll help, more likely I will spend 6.5 hours listening to a dead DJ being replayed on the fuzziest AM radio station my radio can reach (that's a story for another time), but at least I'll feel like I'm doing something.

Although, I can't promise I won't be back here all the earlier in the morning, complaining again.  

Insomnia, Devil: same difference.

You guys?  This insomnia is so massive that I'm almost impressed.  I feel like this is just another example of how my chronic illnesses are combining in a manner created to drive me over the edge.  It's like they all fit together just so - not interlocking and meshing like a nice puzzle, but all jagged edges and hard corners and raw spaces that rub up against one another till they bruise and bleed.

 This one requires that I exercise; that one makes exercising without passing out a near impossibility. 

This one says carefully plan meals & eat healthy; that one says have no energy for cooking, no brain for the math required, and a nausea so lasting you might as well be living on board a rolling ship. 

This one says wow, you're super-emotional and could really use a hug; that one says a hug will cause you more pain than ripping off your own fingernails. 

This one says be super exhausted for every minute of every day forever; that one says, and also don't even think about sleeping.

They just all mesh so nicely together, don't they?

What with all of the insomnia, especially since I had been making small, tiny, minute improvements in my sleep over the course of the past few months, and a pain flare up that came out of nowhere (hello, ridiculous barometer: I'm wondering if you are not a main culprit here), I am beginning to feel like I can not handle things.  Easy things like getting out of bed and washing off an apple to eat it (instead I find myself sitting in the kitchen staring aimlessly into space and wondering what the hell I went out there for), harder things (go ahead and ask me when I last showered: I dare you), and impossible things (lunch tomorrow with Grandmother and some cousins I haven't seen in three years? Never going to happen!)  - they're all just sort of accumulating in a little pile over here, that I'm labeling "Hell no, but thanks for asking!"

It's hard to explain what the combination of CFS & Insomnia is really like - one of those 'you have to be there' kind of things, I guess.  Because everybody can't sleep sometimes - a sleepless night now and then is just a part of life - and so people think they get it.  But they don't.  It's like being underwater, like drowning, almost.  You know you need to push up towards the surface and get air, take a breath - get more than 5 minutes of sleep at a time - but you don't have the energy too push off in the right direction and your arms and legs won't work together for some reason, and your brain says helpful things like "now is a good time to panic, only do it as slowly as possible, if you please", and you wind up just floating away again, hoping the air - the SLEEP - will come and get you on its own.  Parents of newborn babies come the closest to understanding it, I think - the sheer levels of exhaustion you can reach, which you didn't even know existed until right this moment.  At least, that's what they tell me.

 The other day, after about 37.5 hours with no sleep, and with my FM pain level reaching "i will claw my face off now" proportions, & having tried every 'sleepytime' trick in my repertoire, I was just laying on my bed, curled up as best I could, waiting.  And every minute that ticked by made me more angry, made me feel totally out of control, made me want to track down every single doctor who'd told me to 'set a sleep clock' or 'try sleeping with the windows open' or how exercise would make my pain go away and stab them somewhere vital.  Not that I would, but it seemed like a good idea, just so that I could say something equally meaningless like "try not to get stabbed, because then it won't hurt so much."    It's just ridiculous, the things you hear when doctors have no freaking clue what your disease is/means/feels like. 

Anyways, to avoid a similar fate tonight, and because I hope some people are still reading here, even if only occasionally, here I am at 3 am typing away, hoping that my words make sense (and being eternally grateful for spell check, because holy jebus, if you could see some of these errors).  I'm trying not to be angry that the rest of you are sleeping peacefully in your beds, but not angry is about all I can manage: don't be jealous is definitely asking too much of myself.  But being green eyed is understandable, I think, given the circumstances.  Next, I'm going to go attempt to bake cookies, because if there's anything an exhausted insomniac should do at 3 in the morning, it's play with fire, while attempting to make an edible food-type product, completely unsupervised. 

Well, when I put it that way, it doesn't sound like the wisest decision I could make, so maybe I'll just open another book instead.  Or order something off of the internet.  Those sound like good options, right?  Aw, what do you care? You're probably snoring away anyways, you lucky bastards.  Well, I promise not to hate you too much, if you'll come back soon. 

Postage Stamp Island...

As much as my brother-in-law might laugh at me for attempting to rap (or, more accurately 'sing a rap song',) my current life resembles nothing so much as the line from Grandmaster Flash's The Message "Don't push me, cuz I'm Close. To. The. Edge. (I'm trying not to lose my head)"


My pain has been turning it up to eleven lately, following a couple of infection setbacks and my dumb insistence that I do not need as much down time as my body thinks it requires (because "downtime is boring!" ... So is suffering, you ass). Because of that, I am living with the near constant feeling that my muscles and bones are attempting to burst through my skin, as if I've taken some excess Skele-gro* without the accompanying broken bones. You know how on the Hulk (original TV show Hulk), his eyes would glow green, and then his clothes would start falling to pieces as he just expanded into this terrifying green monster? Yeah, it basically feels like that, complete with bonus "Hulk Smash!!!!#!@!" anger because who the hell wants to feel like that? It hurts to breathe, or move, or put clothes on - I literally cried the other day, when we had to leave the house and I had to put on a bra. (And yes, I know it is beyond stupid to put whether or not you look good over whether or not a piece of clothing makes you hurt so much you cry, but I can't get over it: Leaving the house without my bra makes me feel naked and not in a good way.) Sleep is a joke, because rolling over in bed is as dangerous as rolling through a field of landmines, and the other day I just got up and baked cookies at 2 in the morning because if I laid there for one more minute, I was going to flip out.

This is usually the point where my readers who don't have chronic illnesses say something like "Why don't you call your doctor and tell him/her that you're hurting so much?" And I appreciate the thought, I really do, but here's the thing: My doctor's know. They know, and it's not that they don't care, because they do - it's that they don't have the answer for me. They just don't know it. They keep trying - I am, in fact on my third new medication trial in as many months - but if you don't know the answer, you just don't. So calling them and telling them that I feel like the Hulk, it doesn't get either of us very far. "Give the meds more time to work" they say. Or "Did you take the narcotics I gave you - you don't have to be a hero" Right: because wanting to be present, even vaguely in my own life, is heroic. No - I am medicated to the gills, as much as I can be without just being completely out of it (and I can't guarantee that either, sometimes), but (so far), we just don't know the answer.

So there's that. But it's not just that: I feel near the edge on just about everything.

While I won't be homeless if the government decides to go offline this weekend (as I know some will), if it continues for any length of time I will be medication-less, which, for me is quite a serious condition. (I depend on my government to allow me to breathe: what do you depend on it for?) There's no way I could afford the $400 required for a 30 day supply of one of my medications, let alone the over a thousand dollars that would be their sum total - and that's just for the basics, not the 'optional' things like the stuff I use to treat my allergies or the cream I use when the allergy stuff doesn't work. Financial worries would start building if the government was shut down for any length of time, but that's biting off more worries than I need, at this point. But we're there - at the edge.

I'm at the edge with my family, with sisters who are so hurt and angry and frustrated/ing that I just feel like everything I do is wrong. With my mom who's obviously hanging on to her own edge, but won't admit it. With my dad who's having problems at work and thinks it's funny to come home early and say things like "I got fired." (Hint: it is not funny.) With pregnant cousins and non pregnant me, with sisters moving to freaking Iowa or getting married (with no plans, yet!) in the fall, and brothers who don't see the glory of their own children. With a grandmother who asks you for help picking out her funeral clothes when you go over to visit her, in the same breath that she tells you how well she is doing. ("It's not morbid: it's practical. I'm going to be 94." Well, let's be the opposite of practical, then, shall we?) With best friends who don't call or write, and with myself for not calling or writing.

I'm just so close to the edge that it feels like everywhere I turn, there's another edge. Like I woke up on an island, all of the sudden, instead of a continent. Like there's no place safe.

And yet, between me and those edges are little girls with curly hair who say things like "My tooth is loose, even though you can't feel it move," because the girl down the street got money from the "Tooth Bunny". There's 11-yr-olds who direct their own 60 second movie clips on low res digital cameras, that include such action packed sequences as "Fort elephante & how it crumbled!" There's three derpy fluffy bunnies made out of pom-poms and googly eyes, named KC, Sunshine & Band. There's meringue cookies at two o'clock in the morning, and the fact that I can make them sans recipe. There's the fact that the nurse at Zack's office, the much loved Maryellen, worked for five days to get the approval I needed for this latest medication, even though the MassHealth people were being assholes about it. There's Facebook statuses from people far away that I miss very much. There's the fact that my window is open right now, even though it's freaking April. There's all these words typed into little boxes all over the country that show up on my screen, right here on my bed. There's a lot of stuff that pushes me back, and I try to remember it.

The edges are still there though, and my island's getting smaller.


Print Available Here

*Shout outs** to Harry Potter, the Hulk, KC & The Sunshine Band and Grandmaster Flash in the same blog post? Yeah, I'm complicated.

** Using the term 'shout-out'? No, you're really not.

"If you don’t stick to your values when they’re being tested, they’re not values—they’re hobbies."*

Part two of yesterday's topic, politics could lend itself to a long-ish rant or two. But I'm exhausted: I came home today, after two and a half months with Grandmother at her house, and I'm relieved, happy, sad, exhausted, and discombobulated. Mostly discombobulated, as a lot of things are different here, and there's just ... stuff to deal with. Unwilling to deal with stuff, I'm instead trying to figure out how to put myself to bed twelve hours earlier than normal (and hope that it sticks).

So here's some political icons I've got saved on my computer, just because A) some of them are really funny; B) they fit the bill and C) I am too tired to think of smart things, like sentences.

via Lady Kara

via I'm voting Tea Party

via Maddow Show: The National Debt



Where would you rather live? via Lady Kara




*Jon Stewart

-------------------------------------------------------------------------------------
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

Hour # I hate maths (also = 19)

We're getting into the wee small hours, here, and I'm not exactly feeling the number-love, so this post is just going to say that I finished another 100 pages of Tempt me at Twilight and am 67 pages into Vision in White by Nora Roberts, which is my first re-read of the whole Readathon. I've been reading non-stop since my last update, an hour and a half ago, so that's 180 minutes. And now I'm going to listen to the end of my audiobook, or head back into La Nora, (something nice and easy) with a short break to go grab another water and to close my window because it's getting cold.

Before she went to bed, Mum says to me "If you happen to feel your eyes closing... don't fight it," which is kind of one of those very sad jokes that only we get, because I've had insomnia now for at least 7 years: You can wager any amount of money that, challenge or no, if my eyes started to close? I would let them. She did have a good point though, that if somebody tells you you can't do something, it makes you want to do it even more, because people are perverse that way. So maybe, in the next couple of hours, I'll figure out that the way to solve my insomnia is to tell people I HAVE to stay awake. You could also lay a wager down that, if that works, I will pay someone to tell me that. Every night, for as long as it takes.

" All night hearing voices telling me That I should get some sleep Because tomorrow might be good for something"

If you're one of the lucky people who have trouble sleeping, every night you eventually get to the point where you give up. Where you just say "Fuck it" and roll over and get on with your day.

When that time comes as early as 3:15 a.m., it tends not to bode well for the rest of your day, but you know it's as good as you're going to get.


Night has turned into a dreaded time for me. My fevers rage, for no reason, and I sweat and get sticky. The aches of my day must be accounted for - they make themselves known in ways and places that seem impossible, but are normal to me. I toss and turn - top to bottom, back again - and twist myself up, inside and out.

When I'm 'sleeping', it's like being barely under the surface - feeling every twinge, every twitch; hearing every sound; gluing my eyelids shut against the dawn. I struggle to stay 'asleep:' to go deeper, to go under, if just for a few minutes. I want to claim just a few blessed minutes of peace for myself. But I'm just aware enough to panic if the sleep starts to get real, as if I might drown in it, and I freeze in terror at the thought. I'm stuck there, in this half-sleep state, unable to surface, unable to sink.

Which is when the fun really begins. The debates (with myself) about sleeping pills, which really only make me drowsier, which is not something I need help with.
The deep breathing/meditation routine I've got down pat, but by the third time it gets old, and I'm still not asleep. The internal battle over windows open or closed/blankets on or off/pillows up or down/radio babbling or silent. And, finally, the frustration gets to be too much, and the light goes on while I grab for my book, or the TV clicks, blue light floods the room.

Or I come here, where I ramble on about not being able to sleep, and question whether it's coherent enough to post.

“Chronic suffering creates its own chronic sense of time – a thick, stoical knowledge of how long a day takes to be digested, and of the secret folds and crease of time that a sleepless night conceals. Each portion of the twenty-four hours has its own touchy mood as well. The hours before midnight are sometimes hopeful; the darkness seems fresh, and almost like sleep. Even the minutes between one and two a.m. have their mild drama, the sense of a solitary tryst with the self. And in the middle of the night, the need to be brave for the sake of others is mercifully suspended. Everyone else is asleep. Bodies are at rest.

But the time just before dawn requires serious negotiation. These are scary, bottomless hours. It’s as if every night at four a.m. you have to sign a new contract, with many little riders, agreeing to wake up the next day. And this is when the prospect of going under becomes seductive. Struggle seems bogus, the work of a bad actor. At four a.m. fear and the imagination take over, interpreting every new symptom as hemorrhagic stroke and heart attack. Tumors are nocturnal. Like a dog with a bone, the pain runs away with you.

Then there is the loneliness. No one else is up at these hours, and if they are, they don’t want to be. Partners brew tea, droop, and chain-yawn. Even books seemed closed and shuttered for the night. Late-night radio channels voices from the other side – a kind of wacky Australia of exiles from the day light world. Only wolves, ghosts, new mothers, jazz DJs, and people in pain inhabit this corner of the night.
At four a.m., you have no choice but to lie there and accept the weight of time. Lie submerged in it like a boulder in a cold stream, half in the water, half breaching the air. You are bestride two elements now, like an artist in dialogue with the self. Pain has split you into the subject and the object, where, like Emily Dickinson, you can observe yourself decked out in the coffin of the moment.” Marni Jackson, Pain: the 5th Vital Sign

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.

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.

My Best Shot Monday

Welcome to another week!




MBSM-ers: I've changed a lot of my Flickr photos from Public to Private, in response to what seems to be an overwhelming number of posts about pictures being stolen and re-purposed. I'm still not happy about having to do that, for a few reasons:

1) My blog gets very little traffic, and this may be a huge overreaction on my part ... to which I respond to myself, well, 'if you can't be overprotective of the children in your life, who are you going to be overprotective of?' Plus, Flickr is a lot more public than my blog, so that's where I've made the changes.

2)Sharing my photos - here and on Flickr - & sharing in other people's photos, has really been inspiring to me. It helps me feel creative and gives me joy, and I think it's really horrible that something like this would interfere with that.

3)It feels sort of like giving into bullying, even when I know it's more just being proactive. I just hate that I have to take this step because a bunch of people are ridiculous and don't understand boundaries. At which point myself responds with 'but you know there are some sickos out there, which is part of why this blog is anonymous in the first place, so just shut up and do it anyways.'

Well, I obviously listened to the little voice, but am still feeling petulant about it. Petulant is better than regretful or frightened though - which is what I would be if any of my pictures of the kiddos wound up somewhere else (even if that place were 'harmless.'

So, the point of all that is - If you have Flickr, please click through my sidebar shots, and add me, so that we can be friends! Or leave your Flickr URL and I'll add you as my contact... I definitely want to be able to share photos with all of you.

Even though I've taken those steps, I still am going to post pictures of the kiddos here. That feels like a pretty reasonable thing to do, since I am not willing to just stop doing something I love. I'm interested in hearing what reactions you all - all my creative, photography minded friends - have had to this, and what, if any, steps have you taken...

Now let's get to the program here and I'll show you My Best Shot Monday.

I wasn't quite feeling up to a practice run this weekend, so I decided to watch Youngest Nephew and Lil Girl while everybody else went out and partied. We had a sleepover! Which was exhausting! But, also, these kids are amazingly awesome. Youngest Nephew added "Drive Auntie NTE nuts" to his checklist and then put three empty squares next to it, so he would "remember to do it a bunch of times." Lil Girl sang the Blue's Clues song when it came on the radio (I didn't know she watched Blue's Clues!) and has decided that my name is either 'bay' or 'me' - At least 'me' makes sense, since when she points to a picture with me in it, I say, "Yup, that's Auntie NTE, that's me." But 'bay'??? Trust me when I say that is nowhere near my name. And they got along, mostly. And behaved, mostly. And slept till almost 8 in the morning, which, their parents assure me, is a kind of a miracle.






Also, it gave me something to do all night long, such as take a million pictures and try to figure out F-stops. (Which I still have not).

Here I am!

Two days in a row, even. Can you believe it?

Except very little happened today, and I wasn't sure what I could tell you about. But then, I took a shower. And, showering, by necessity has turned into someting intersting:


It is both torture and treat at the same time.


First, a little background about our bathroom. We live in a very old house: the bathroom door is not wide enough for the wheelchair, so I can't get in or out on my own. It's a small little room, so even if it fit through the doorway, there'd be no room for it to actually move. We have a claw foot tub, which, while beautiful, requires climbing in and out of. I cannot climb. I (obviously) can't stand, so I use a showerchair. Showering stopped being a solo effort for me about 10 years ago. And it is a challenge I am not always up for.


And the actual shower itself is like my own special form of kryptonite: with nerves that read even the slightest touch as PAIN, it's not my favorite thing. I can't handle cold water, at all, and my preferred water temperature is somewhere between "boiling hot" and "actual temperature of the sun." This searing heat zaps my brains right out of me (It's the POTS: my blood pressure is about 20/0 by the time I get out of the shower), and I can almost watch my ability to think or move flow right down the drain with the water. After my shower, my mom pours me into bed, where I have my "coma." At least 2 (and sometimes up to 10)hours of lying in bed, not moving, trying to get my body and brain to reboot.

However, the only time my body is semi-pain free is right after a blistering hot shower. If I hold the heat over the sorest muscles for a sufficent time, when I get out, all I can feel is a blissful numb tingling feeling.

Wow, with the poor descriptive word choice.

I wish I could explain it better, but it's really just that: the intense heat leaving my body, the chill in the air interacting with that heat, it's as if my body is suspended right above my normal oh-my-god-shoot-me-now level of pain, even for just those 3-4 minutes.

Of course, those three or four minutes are just a bit shadowed by the fact that I can't move, or connect two thoughts to each other.


But here I am a few hours later: brain working again, fresh and clean, talking to you nice people.

So, that was my day... what sort of intersting things happened in your life today?