in the days we sweat it out on the streets

my body is a temple.
my body is a cage.

hope is the thing with feathers.

I can feel them inside my lungs when I'm running along the lake path. I can't take a deep breath.

I can run twice as far as I could ten years ago. I guess I got more chasing me.

I count to five. over and over. there's little room for thinking when you're choking on a broken heart and metaphysical wings.

I will be the fittest person with fibromyalgia on the planet. you will never, ever think to look at me that I have an untreatable nervous system disorder that makes me feel like someone's been borrowing my body at night to play rugby in.

at least this way I own the pain.

for the fucking win.

everything falls apart

here's the thing. every time I try to have a relationship, it's never just me and him. it's always me, him, and pain. and if he's got his own pain to deal with, well, the bed just gets too small for all four of us.

maybe one day I'll be able to see the difference between me and pain. I'll quit thinking that my brokenness makes me inferior. I'll quit making excuses for the way I am when I am ravaged by pain.

I just don't know how to do that now. days like this when I just feel flayed, when my heart and lungs are raw with grief, I don't know how to separate who I am from this rotting flesh.

When I was small a teacher gave me a collection of fairy tales. I identify very strongly with the story of Catherine and her Fate. Except no fairy godmother ever came to me and asked me to decide between happiness in my youth or happiness in old age. and I have no guarantee that the Universe will ever cease to ask so much of me.

and I want you to notice when I'm not around

I found a new therapist, one who does EMDR. When we were setting up the appointment, we talked briefly about what I think is wrong with me and what I want to work on.

here's the thing: maybe I was in so much emotional pain that it just spilled over and became physical pain. then again, maybe I think I deserve to suffer. maybe I think that I have to be in pain in order to be loved. maybe this physical but invisible manifestation of pain is the only way I could get my parents to admit how badly they fucked me up. maybe it's my body screaming out I don't deserve this and no-one is listening. maybe after a decade of nightmares and self-hate and cutting and burning and screaming bloody hatred and rage into the big empty space where my lost personality- the person I was before I was made sick- used to be, maybe it just built up and shorted out and left me with these endless aches.

maybe if I can stop believing that I am sick I will stop being sick. I've been told I was sick and broken since I was 13. I don't even remember what it felt like before, to feel safe and coherent and cohesive and loved and accepted.

I wish I believed in unconditional love. I wish I believed that I will be ok.

I am terrified of what is growing inside me. I am terrified of finality. I am afraid I will never be wanted again, that I will never be touched by someone who desires me. I have so internalized these years of rejection that now my body is rejecting itself.

how do I stop
how do I feel whole

but am I?

I had a lovely summer. I learned to be happy, I pushed my limits, I made new friends. I was more than just my sickness; I was someone you'd want to be around. People started asking me for advice: how do I quit smoking, what vitamins should I take, how should I change my diet, can you cure my cold.

we're well into autumn, with just over a month left before the shortest day of the year. as the light begins to decline the respites from pain grow few and far between. I'm trying to come up with better coping mechanisms for Incipient Winter Doom. I got a light therapy box, a shit-ton of vitamin D, and I've been ingesting a ridiculous amount of anti-anxiety/depression/pain herbs, both Chinese and European.

I have a tendency to let myself slip too far down into the Black Dog hole. I have a tendency to let the physical anxiety from consistent high pain levels create mental obsessions over things that are out of my control. I confuse a desire to hurt less with a death wish. I forget how much better things are when it's warm outside.

Pain is a time warp. It's long-term memory damage. It's being forever stuck in the present. If I were more than just a lazy Buddhist, I'd be ok with it. instead I think maybe there's such a thing as too much mindfulness. sometimes I hurt so much that it gets hard to breathe.

Pain is an endless rick-rolling and I can't Force Quit.

Until April or May, then, the best I can do is turn on my light-box, take my vitamins, drink my potions, hope that Corydalis yanhusuo doesn't tolerate too rapidly, and try to fill my life with as many distractions as possible.

Until April or May, I'll dig my toes into the clay and keep pushing this heavy, heavy rock uphill.

(and keep watching House.)


It is during that return, that pause, that Sisyphus interests me. A face that toils so close to stones is already stone itself! I see that man going back down with a heavy yet measured step toward the torment of which he will never know the end. That hour like a breathing-space which returns as surely as his suffering, that is the hour of consciousness. At each of those moments when he leaves the heights and gradually sinks toward the lairs of the gods, he is superior to his fate. He is stronger than his rock.

for religion I tend to check "other" and write in "newtonian"

In two weeks I'll be 29.

I remember scoffing when my undergrad adviser told me life didn't even begin to make sense til you turn 30. now I totally get what he meant.

karma is nothing more than Newton's 3rd law.

there doesn't have to be some great moral or spiritual breakthrough where I have a marvelous epiphany and then everything stops hurting and baby Jesus soars off with my heavy burdens.

just like there isn't a miracle cure for my fibro. there's x amount of things I can do that all contribute in a small way, but on the whole I am accepting that my life is going to be grueling for whatever's left of it and the important thing is for me to feel like I matter.

28 has gone by really fast. I went home for xmas, to Columbus for New Year's, got off some meds, watched Rosie die, got off some more meds, had surgery, started school. somewhere in there I learned a whole hell of a lot about what love really is.

I learned that I can't push myself all the way to my limits because my brakes aren't good enough to stop me right there at the end of my energy... I have to cut myself off BEFORE I am exhausted. physically or emotionally.

I'm learning to recognize how dangerous my "little sister syndrome" is- my need to be as tough and strong as everyone around me, even when they are healthy, strong neurotypicals. it's ridiculous. I'm frakking tough as hell. I don't need to prove anything.

I'm realizing that I have an aversion to studying for anatomy because I associate muscles and tendons with surgery- more pain. I am not entirely sure how to break this conditioning.

most of all, I am finally able to enjoy solitude again. I had way too much of it for a time, but now it's precious.

still.

it would be so nice

I think I've gotten closer to finding the right balance of supplement but gods what an obscene amount of pills.

600 mg 5 htp at bedtime for serotonin.
100 mg theanine 2x a day for dopamine/GABA. (just got this today and I'm pretty optimistic. seems to help with the pain and brain fog.)
100 mg coQ10 in the am to help form ATP.
6000 mg fish oil divided into am/pm doses for insomnia, depression, dry skin, memory, etc etc etc.
2.5 mg Marinol (thc) 2x a day for pain and appetite.

plus a mineral supplement that is 4 horse-pills, plus Emergen-Cs, plus liquid chlorophyll.


hopefully this will help keep me functioning, as long as my dad is willing to pay for it all. shit ain't cheap.

I can't seem to keep weight on, and it worries me. or rather, it adds to the general anxiety I have about my health declining. I'm sick again, feverish and achy, swollen glands, exhausted. If I'm not better by next week I am going to go get tested for mono.

I got a flickr pro account and was looking at pictures from last year. compared to then I look emaciated.

I'm so fed up with being sick. I have a good day, then I overdo it and get sick again.

acceptance. acceptance. I might never get any better. I need to focus on being grateful for what health I do have. some days I have to chant to myself "at least I don't have lupus. at least this won't kill me."

I miss having a social life. I miss dating. it's been since April since I had someone cuddle me. I don't know how to talk to regular people anymore. all I seem able to talk about is fibro. being sick has consumed me and I don't know what is left.

whew

I decided to drop the class I had Wednesday nights and it's like taking off a pair of sunglasses I didn't realize I was wearing indoors. it was a fairly interesting class, the philosophical and historical foundations of Chinese medicine, but as far as priorities go, the two classes I have the next day are so much more important. I just couldn't get home and get to bed on time and I was toddler-faced and attention span-less through my long 8 hours of class.

So far, after two weeks, I'm pretty excited. half of the classes I am taking now are not super challenging, just a lot of review and rote learning. I haven't taken biology since 1997 and I never took anatomy. I am glad my school really emphasizes biosciences, because I hope to do a lot of research later on in my career. I still remember what mitochondria are and all that, so I am not reallt worried.

We've discussed yin and yang characteristics in several of my classes and it's been interesting to try to identify myself. I have come to the conclusion that I have excessive yin and almost totally depleted yang, probably as a result of being forcibly medicated in my teens when I was still growing. it definitely makes sense to me, even on a nutritional level. When I am feeling really poorly, I crave certain foods, all of which are very yang- I want hot, spicy, garlicky meats and chocolate, I want sunshine, I want to be warm and active. When I am feeling well, my natural personality comes out- I'm bubbly, excitable, exuberant, impulsive. When I feel bad, I am quiet and withdrawn.

I've done a few things in the past week to try to test this hypothesis, mostly eating more meat and only listening to upbeat music (according to Tony, my tai ji teacher, rap music is yang, so I have been pretty much exclusively listening to Jay-Z and Missy Elliott). I also decided to take a break from birth control and menstrual suppression, since birth controls add yin energy and I already have way too much of that.

I'm optimistic again. I feel surprisingly ok today, especially for a nasty rainy day punctuated by uterus spasms. I got some really cute skull & crossbone galoshes and some winter gloves, so I'm one step closer to being ready to ride in the snow. if it ever stops raining I will be able to start getting my new fixie put together.

It might take me slightly longer than I anticipated to finish grad school, hopefully no more than an extra semester. I have to accept my limitations, and keeping up with an overload is just not possible if I want to do well.

After an email inquiry I sent, the assistant dean is trying to get a disability support group going at school. I hope some of the more advanced students respond. I could definitely still use lots of guidance.

wathcing mad max is making me thirsty

I push myself too hard, testing my limits. I went on a bike camping trip this weekend with the Rat Patrol, decided to take a trailer so I could bring a chair to sit in. I'd started to get a cold the day before we left but went anyway, telling myself I needed the experience. you know, there's only two weeks left of my summer vacation, it'll be better than sitting at home on a Saturday night, you haven't been camping in 15 years, etc, etc.

I puked twice, once on the way (about 2.5 hours from the meet-up point), once after we got there and I blew up the sleeping mat. I tried really hard not to be a whiny, cranky bitch. I managed to stay up and be social for a few hours. There was some lovely veggie chili and some singing around the campfire, but being the only person not drinking, I was bored and sleepy pretty soon after dark. Went to bed at about 10, slept fitfully with earplugs in, constantly woken by the bugs and the festivity and the dampness creeping into my pillow. I was almost delirious with fatigue when I left in the morning, around 11. The trip home through the suburbs was mostly bike trails, quite beautiful, and I was totally miserable almost 3 hours later when I got home. Too much weight for me to pull, especially on a one-speed.

I'm physically incapable of taking naps, so I spent most of the day yesterday in a haze of dizzy misery until I finally fell asleep around 10.

Today I have a brutal cold and am restless, but too wobbly to really move. I'm on my third movie of the day.

I want to say the trip was worth it for the time spent with friends, but I was so self-conscious about being a wet blanket that it was hard to relax, not to mention I was too out of it to enjoy the beautiful scenery.

Having a fragile constitution seems to make loneliness more painful because I barely remember what it was like to have Big Wild Fun, so I grab any chance I can get to hang out with my friends, even if I have to duck out early. I try to be mindful of how lucky I am to have all my needs met, to be able to walk and ride a bike, to live unassisted.

I saw a urologist and had a cystoscopy done. it was the singular most unpleasant experience of my life, rather like losing my virginity. I made it through my staring at this poster.

there's nothing visibly wrong with my bladder, so at least I don't have interstitial cystitis, but the doctor (who talked to me for under 3 minutes) just gave me the name of yet another specialist to see. I'm opting not to. I will just hope the pain goes away. Resign myself to it. Never, ever, ever have sex again.

Days like this when I am totally run-down it's hard to keep learning from all this. I just want to be comforted and I don't see it happening any time soon. I just have to keep on making it through a day at a time. Until what, I don't know.

I am tired. I am true of heart! You are tired. You are true of heart!

the pain is my constant companion. sometimes it withdraws a little and I am able to go socialize with the neurotypicals, but for every hour spent in the garage at the lyndale rats' messing with bikes, there are seven hours spent in bed listening to the pain gnaw away at my body, tiny fire ants crazing my bones to dust. worrying about the future and waiting for sleep, and oblivion.

I have reached the point where I no longer remember what it was like before the pain.

I try to tell myself that there is something I must learn from all this, that I am coal being crushed to diamond. Were I to believe in Powers that Be I would be praying for grace and guidance and for whatever wisdom there is to be gleaned from the unrelenting boredom and loneliness to manifest itself in my heart. this is an exercise in trust, and in patience, and in acceptance.

I want to believe that I am not missing out on anything living in the slow lane, hobbling along with my heavy heavy load, I want to believe that I am shedding karma and learning to be true of heart. I want to believe that my suffering will inspire love and compassion in those around me. I want to believe that one day I will be self-sufficient again, that I will be rewarded for these long dark teatimes of the soul, that there is in fact an end to pain.

I can no longer ask for mercy. it has clearly been denied. for now, at least. all I can ask is for patience, and faith. and hope.

may all beings be at peace and free from suffering. and may I one day be one of them.

jalouse

Now that I've made it through the winter and actually have a small posse of friends, accepting my body's limitations takes up more and more of my emotional CPU. Any exertion tends to have me limping within hours and I tend to lose mobility after sundown. I can always ride my bike, but other than than I'm pretty lame. literally.

I miss my body. I look back at past summers and marvel at how much I took for granted. I'd started to have a lot of pain then, but I wasn't nearly as crippled as I am now. I miss being able to stay up late, I miss being able to drink without having my bones transmuted to hot lead the next day, I miss dancing. especially I miss dancing.

it's hard to dance with mermaid feet.

The other thing that preoccupies me lately is dealing with memory loss. yesterday I started reading the sequel to a book I had read a few years ago, and skimming through the synopsis at the beginning I was appalled by how little I remembered. this makes me doubt my ability to do well in grad school. there will be so much to memorize. I used to take so many supplements to slow my brain's deterioration, and they seemed to help, but living on less than 800 a month kind of rules that out.

So I muddle on, taking charity when it's offered, trying to be a good person and fight this bitterness in my heart. but there's a deep and bone-chilling fear that is starting to seep in to everything I do, or think, or dream. I am not going to get better. and realistically, every year I am going to get a little bit worse.

o, to be foam

Your tail will then disappear, and shrink up into what mankind calls legs, and you will feel great pain, as if a sword were passing through you. But all who see you will say that you are the prettiest little human being they ever saw. You will still have the same floating gracefulness of movement, and no dancer will ever tread so lightly; but at every step you take it will feel as if you were treading upon sharp knives, and that the blood must flow.

but in the end she became foam, and then a daughter of the air.

no such luck for me.

I'm starting to really resent neurotypicals. I don't want to play nice. your charity breaks me. I'm sick of sitting in bed. the tulips are too excitable.


re-reading through the old blog, waiting for lunch plans to coalesce.

The mental health industry is sick. The information packets at MMHI refer to the patients as mental health consumers. makes me picture rows and rows of blank eyed shoelace-less men and women lined up at picnic tables eating spaghetti. the sin that eats away at the industry is that the providers think they are superior to the consumers.

we've fetished mental health to such a point that we refer to it as a commodity. can one buy mental health? should one have to? does it really come in multicolored gelatin capsules? is there a surplus of mental health rotting away in a warehouse somewhere? does EliLilly offer producers money to burn their excess mental health to keep the price steady or do we flood the market of our neighboring countries with genetically modified mental health, causing their collectively farmed mental health to be worth less, forcing them to immigrate to the border to work in our mental health sweatshops?

the tulips are far, far too red.