collecting words in pillowcases & flipping them into the wind.

so, I’m still alive, if you can call it that.

I’ve been on his medication for long enough for it to do what all medication does — flatten me out & take away my words. the poet? she’s buried under a mess of chemicals & cassette-tape-months on repeat.

the only words I have now are “maintenance medication” and “you’ll probably always need to be medicated” and “we can always add an antidepressant… or seroquel”.

my options in life have been distilled into plastic bottles full of plastic futures that cost entirely too much.

do I regret going on medication? not sure yet. I probably won’t know until after I’ve weaned myself off, which I’ve already started doing, without psych advice, might I add. not that it matters much; I already know what my psych would say; I’ve had all those words already. it was worth it at the time; it have me a glimmer of hope to hold onto when I was thisclose from letting go of everything. everything has it’s place.

my running freefloating anxiety & sense of impending doom has all but disappeared, so there’s that. not to say the anxiety is gone — it’s not. I still get anxious about most everything: going to the store, going to the neighbours to pay for rented parking, going to the dry cleaners, thinking of starting to drive again. Okay, so three of those four I still haven’t done. so, define “progress”?

progress is, to my psychiatrist, accepting a second medication. cocktails to the girl who doesn’t drink.
progress is, to me, cooking every single meal I eat from scratch & eating nothing with a label. okay, so I’m still only averaging two meals a day, & one snack if I’m lucky & wake early enough, but I’m cooking! I haven’t been able to do that solidly for.. longer than I’d like to admit.
progress is, in my mind, that “a meal” consists of more than just one egg, fried. 230 calories is now a “small snack”. 230 calories used to be huge. 230 calories used to be a meal that I maybe couldn’t finish.

I am filling myself with much other things, now.

I’ve officially been on this elimination diet for 3 months & it’s become second nature. it got a whole lot easier once I realized there is a whole group of people who already eat like this, by choice. it’s called “paleo”. hahaha! there are blogs & recipes & recipe books full of food that I Can Eat. the writer in me can’t find the words to describe how fucking hysterically hopeful & … happy? that makes me. See, I am useless when it comes to trying to express happy emotions. It’s been that long.

yeah.

so I am pretty on board with this ‘paleo’ thing. I’m a little behind the curve, I know, but as I’ve always been ridiculous thin I’ve never kept up with the latest ‘diet’ things. until I was forced on it by a high TTG & another word: celiac.

as for my celiac-ness, well, it’s still here. still symptomatic, still getting more words, such as.. refractory sprue, steroids, stitches, surgeries & never getting better. luckily I am still me, so that means I can replace those scary words with ones that are much more familiar: denial & blind optimism.

optimism?

yeah, it’s been a while. optimism & hope now comes in the form of, well, more words, but these ones aren’t mine: these are written by someone who knows far more than I do, on nutritional therapy. Julia Ross, “The Mood Cure”, a manifesto based mostly on curing all this mental shit with high doses of amino acids & vitamin/mineral combos. and what do I have other than time? an ability to swallow 3 pills at a time & whole lot of hope.

I’ve been on her supplement plan for 4 weeks (not counting the one week where I fell off the wagon & binged exclusively on homemade honey-sweetened-nutflour-baked-goods, cakes & french toast, but I deserve a little break for getting through all the SHIT I’ve been through in the last year+, damn it!) & I’ve already felt better than I have in…….. years. better than I did when I cut gluten. better than I did when I cut processed sugar. better than I did when I cut fast food, dairy, nightshades, starches, grains…. and a whole shit load of better than I’ve felt since starting my state-sanctioned-pharmaceuticals. so, fuck all this; I am going fullsteamahead on this supplement plan. when I had my binge/crash, I felt my mood slipping slowly each day I went without my aminos. but… even still.. my mood wasn’t nearly as bad as before. just getting dark around the corners, as if being consumed by a silent flame. my suicidal thoughts were relegated to 30 minutes of sadness, instead of my entire waking existence. maybe nothing to you, but to me, that is a fucking miracle. as it turns out, those miracle pills I’ve been looking for since 2008? THEY EXIST. only they originate from protein, not pharmaceutical laboratories. shocking, I know.

I am seeing my psychiatrist at the end of the month, when she gets back from her vacation & I am informing her I’m going off my meds. they haven’t done anything positive for me since I hit around 100/125mg, anyway. my progress has plateaued, and who knows if that progress was from the antiseizure meds or from just a mix of eating more than 1000 calories a day, cutting grains/nightshades/starches/the rest of my gluten & the placebo effect.

I’m getting other effects, too, that aren’t placebo: my hair is falling out, my eyelashes are falling out, my eyes are blurring & it’s hard to focus them.. oh, and I’m suffering from a serious case of medication-induced-unwritingitis. it’s not so much that I can’t write, it’s just that I forget about writing. no longer is the need to write there… the pressing need that forces me to spill words onto keys like they actually matter.

not sure if I’m getting better or if I’m just accepting this lower standard of living. maybe both. but I’ve definitely accepted that this ‘getting better’ thing is going to take time, even if my mind is trying to hurry it up. this letter today sounds pretty depressing, I guess, but for what it’s worth I don’t feel depressed. I have been suicidally depressed for the last 2 years up until the last 4 weeks when I started taking these aminos, so there’s that. a reprieve from the urges that make me want to leave this world behind? sure, I’ll take it; it’s a welcome vacation from the life I’m currently stuck, stuck, stuck in.

taliho, for now,
I’m sure I’ll be seeing you somewhere closer to 125mgs.

a little bit scratchy.

it was dark out; still not certain what that meant.

head-in-the-clouds optimistic
but also
eyes-in-clouds blurry,
often wondering;
is any of this real?

wondering how others could just,
be in the world.

i was always
clumsy & distracted by
my nervous shoulders, my clenched stomach,
my foggy head.

i was always
stuck with me circling calenders on the dates —
whispering words that sound more like wishes
even as soon as they’re said.

i grow older but, even still,
my mind can never keep up with the time.

i change my hair color & try to convince myself
that things are different, now.

the back & forth.

there’s two of them, inside my head, but that’s great — before i only thought there was one. but i can see clearly — the only way hypomania will let me, of course — that there’s two.

the louder one is the worst. even when it whispers it’s as if it’s standing thisclose to the microphone; so it’s all i hear. and i know it lies, it’s wrong all the time & it’s always full of excuses (just like me). this is the one that comes alive most often, the one i’ve been sharing an apartment with for the last year & a half. Continue reading

not otherwise specified.

i)

just eat
simple advice comes in pre-packaged chunks
a bite-sized piece that breaks off
can’t chew
my throat swells dry &
your words get stuck between my teeth.

just look through the cupboards & find something you feel like

i feel like laughing,
something i feel like?
i feel like forgetting human function
floating above the clouds & eating half-a-meal
on my shrunken stomach
when the hunger strikes;
maybe tomorrow? maybe tomorrow night.
my too-small jeans are becoming too-big &

i feel like forgetting i exist.
Continue reading

my mathematics said what? (gluten IS addicting, but what’s worse than that it’s in EVERYTHING, even raw/precut/fresh local supermarket veg))

i did some math. i am really bad at math (probably because of my inability to think rationally ;), so i needed to use my phone calculator. but the numbers scared me so much more: blinking dull grey on an even-duller-grey background: 12.2.

my previously-written numbers were the same; my math wasn’t wrong; i had figured it — out just those numbers sounded so… off.

12.2. or 12.2%, should i say: the percentage of my body weight i’ve lost in the last 2 years. & 60% of that has been in the last 4 months.

because of celiac disease. seriously. & it scares me, so much. so, for lack of a better term, fuck this. this is my resolution, my confession; i confess to do all the following & i confess it will be hard as hell. but who am i kidding, i am the all-or-nothing type.

i’ve just pre-dated the next two months on my calender, for anniversaries,

of the weeks in which i will not consume ANY gluten:

  • NOT by “this product is made in a facility that processes wheat”
  • NOT by “this product may contain wheat”
  • NOT by cross-contamination
  • NOT by restaurants that don’t get how strict my gf needs are
  • PROBABLY NOT by restaurants at all (let’s be honest, i have trust issues)
  • NOT by “oh, i already opened this MadeInAFacility item, but i can’t waste it…”
  • NOT by the “glutenfree!/made in a facility that contains wheat”
  • NOT by “oh my look at how delicious that chocolate/cherry cupcake looks”
  • NOT by “well, i haven’t cheated on my diet in 2 months & this questionable meal is convenient….”

and

  • if it’s packaged without a GF circle badge, NOT BUYING
  • if it’s a supermarket-style pre-wrapped, no label pre-meal, NOT BUYING
  • if it’s been processed in any way prior, NOT BUYING

i am beyond tired of accidentally/sometimes intentionally glutenbombing myself on a weekly+ basis. i’m four days from FULLY GLUTEN FREE, but i cheated twice with whey last two days & my symptoms are still intense. i want this wheat, these gluten-toxins OUT of my body, so i can begin to physically repair 27 years of intestinal damage. i want to stop getting lax with my diet & thinking things “won’t hurt”. i am too sensitive for that bs; i physically can’t. it is destroying my body AND my mind. i want to eat at least 2500 calories a day, every single day. and i want to do it without feeling terrible after, far too stuffed. i want my moodswings to be permitted to happen completely separate from the physical symptoms i am experiencing due to my celiac disease.  in a lot of ways i’m lucky; celiac disease supersucks, but at least i can fix/repair my system by just not-eating-a-certain-thing(s). i’m grateful i don’t have anything that requires medication — we all know i have enough medication-needing-thingies without adding on another one. i realize healing will take time, but i’m especially impatient because i thought i had ‘started’ treating this back last august. to know that it’s only been one week is pretty shitty. i want to be able to do more physical exercise without getting short of breath so quick, i want to be able to run & dance again, i want to dance so badly. i guess i want to fix my anemia, fully-perma-fix, none of this perpetual-fixing with iron tablets that don’t really work & an intestinal system that won’t absorb worth, well, shit. i have my humour & the rest of my life & i am willing to wait, but i want these things more than anything.

heh, quite the change from hypomania’s ‘wanting new jeans’, which coincidentally i have, if only because i’ve lost weight.

extending the olive branch.

seeing my psychiatrist in a little over an hour. psychiatrist. despite my diagnosis & my absolute inability to function at anywhere even close to a ‘normal’ level for the last … two/three/four? years, i still feel a little hesitation using that word; it feels wrong. psychiatrist? my psychiatrist. i say it with a laugh, or in a joking voice — humour — my favorite coping device. pretty much one of the only ones i have, let’s be honest. well, one that isn’t completely self-destructive. denial, my favorite friend. Continue reading

a self-destructive mind to match my self-destructive body. (a tribute to autoimmune diseases & my diseased logic)

i am lemon yellow
& leaking from the wrists.

in battle by myself,
again,
i am trying to fight
the part of me
that thinks i can survive on tea & smoothies
because everything else
makes me sick.

‘trying to get better’ is my full time job & i
work all the overtime
for the paycheque i have yet to get.

on doctor’s orders i
cut out cane sugar, cut out gluten, cut out dairy, cut out starches, cut out beans,
cut out all the things that give me medical mood swings
& make me feel like shit.

permission to restrict? no problem
almost afraid to admit
justify my insane meal plans this time because
celiac disease
is such a convenient excuse.

disordered eating;
disordered mind
saying the only things anorexic about me are my
eating habits
& my BMI.
always questioned but escaping diagnosis
because i don’t try to lose weight &
i don’t think i’m fat
i just don’t think

i deserve to eat

but they never ask me that.

my doctor prescribes me 30 pounds;
she recommends 3,200 calories a day
my mouth coats with cotton
there is no fucking way —
she’d settle for 2,500
but while we’re wishing unlikelies
can she prescribe me wings? so i
can soar away from the world where even
1000 calories sounds like a challenge.

i’m just naturally underweight, my mind says
i was born with the ability to survive
on sunshine & well wishes & words.

scapegoat celiac perfect excuse for why
fasting feels fine;
& why it’s normal to me
to not be hungry, to stop long before i’m full, to restrict when i’m stressed;

& to always be stressed.

it’s not until i see pictures
when i’m unrecognizable —

knobby knees, arms like sticks & small clothes that don’t fit.

they say the camera adds ten pounds
but to me it takes away twenty;
always a shock to see on film
what i can’t in the mirror.

denial so tight i confuse it for skin.

i am stiff joints & shaky arms & stumbling,
i am feeling like a fraud but still
i am running until i see spots.

i am used to feeling
my heart fluttering when i’m sitting
tripping over it’s own beats &
trying to escape.

now i am justified
celiac disease provided permission
to scribble another fifty things on my can’t-eat-this list…
disgustingly proud, glorified for restricting suddenly being so healthy
after a positive TTG blood test.

cruel irony in that

i am autoimmune; most food makes
my body attack itself from the inside —
medically diagnosed self-destruction & i wonder how the hell
could my mind ever be fine.

how far i have come in one year. (when small things become huge)

dear depressive side that doesn’t remember;
dear negative thoughts;
dear irrational mind that likes to deny;
dear disordered head;
dear worthless piece of shit;
shut up & listen:

recovery is not linear!

a year ago..
i couldn’t get out of bed.
& when i did,
‘getting up’ meant moving from lying on the bed to lying on the couch.

a year ago..
i couldn’t get to sleep (until 5am if i was lucky).
i couldn’t wake before 3, 4, 5pm without feeling physically ill;
couldn’t make do with less than 10 hours of sleep,
& twelve was preferable.

a year ago i’d awake
desperate & depressed
closing my eyes & begging sleep to take me away
another couple hours until i had to face
the day i wasn’t ready for.

a year ago i was too weak
to even stand in the shower, &
i couldn’t stand to brush my teeth more often than
a couple times a week.

a year ago i was single digit ferritin, brutally anemic, unable to even remember my blood test results required a bottle of iron pills.

a year ago i was utterly undiagnosed & unable to cope.

a year ago..
i couldn’t cook.
i couldn’t clean.
i couldn’t see yesterday’s dishes in a pile without crying & feeling defeated.
i couldn’t even walk with flat feet because my leg muscles were so shrunken & weak.
i couldn’t eat more than two small snack ‘meals’ a day;
dry saltines were considered ‘dinner’ —
i’d eat half a package on
a very good day.

a year ago..
i’d awake weighing a thousand pounds
arms like cinderbricks
unable to move,
stomach so swollen i could pass for pregnant.

a year ago a glass of water was heavy &
my arms would shake to carry it.

a year ago..
i couldn’t even have one okay day.
i couldn’t do anything other than selfmedicate from the moment i awoke to the moment i went to sleep for three years.
sometimes i couldn’t even talk.

a year ago i
couldn’t even realize i was in a tunnel, let alone see a light at the end of it,
couldn’t tell my psychiatrist the whole truth,
couldn’t feel like i deserved anything,
couldn’t accept that i needed help,
couldn’t accept medication,
couldn’t accept recovery,
couldn’t reject my disordered coping mechanisms,

& didn’t even want to try.

three hundred & sixty some days,
reading through the list of how things used to be and i
feel so very far away.

okay so
maybe i still feel
like a bag of shit
with once-tight jeans that still don’t fit
& maybe i still won’t tell my psychiatrist the whole truth
but then again

i am starting from scratch
working past
27 years of disordered eating,
27 years of messed up thoughts,
27 years of untreated celiac disease,
5 years of  being housebound by anxiety,
4 years of suicidal depression,
3 years of fulltime addiction,

1 year is nothing but three hundred & sixty some days of fighting everything i’ve ever known & so
perhaps i’m stronger than i think.
funny how a self-incriminating list
of how fucked up i used to exist
of all the ways i was ashamed —

can in three hundred & sixty some days
suddenly somehow
become empowering
if only because it’s all
three hundred & sixty some days away.