Friday, June 18, 2010

The websites/links I use for reaching out to others with chronic illness:

1. butyoudontlooksick.com

2. dating4disabled.com

3. yahoo groups (for me CF Alliance and CFIDSandFMSingles)

4. disabledpassions.com (not as active as dating4disabled)

5. disabledunited.com (again, not so active)

If anyone is reading this and has sites in mind, please post them in a comment =)

Friday, April 23, 2010

Netflix movies I've watched and their ratings out of five *s

Love For Sale: Suely In the Sky (slow but serenely inviting ***) - foreign film/brazilian

The Man Who Copied (****) - foreign film/brazilian with the actor from my fave movie Madame Sata

The Crying Game (** I'm sure its effect would have been more intense back in the day)

Following (*** quaint)

The Machinist (*** strong performance by Bale)

The Talented Mr. Ripley (*** seen it before)

Jacob's Ladder (**)

Wild Orchid (**)

Blade (*** lol but the effects and music are SO nineties!)

Much Ado About Nothing (**)

Minority Report (****)

My Own Private Idaho (**)

little update

Currently reading: Cat's Eye and War of Dreams
Looking forward to reading: Faces in the Water

Recently watched: My Own Private Idaho and Much Ado About Nothing (they bored me)
Still watching: Weeds (season 4) and Scrubs (season 8)
Netflix is a beautiful thing when you are mostly homebound

Looking forward to seeing a Brazilian movie called Simonal - Ninguem Sabe o Duro que Dei in the theater on Sunday evening

Meeting ppl on dating4disabled - even though it is a dating site I like to meet ppl for friendship there who are also in fucked up situations who I can chat and email with. It can be daunting though and you always have to be careful when meeting ppl online.

Illness is still the same, nothing better or worse. I still go for walks but not every single day. I want to see Dr. Bhakta and an Infectious Disease Specialist through Kaiser this Summer.

Recent tests all came back normal - mycoplasma, IgG subclasses, and cortisol levels

BTW I do not really have CFS. My MD was just liberal with the diagnosis. I don't have all the diagnostic criteria like swollen lymph nodes, pain, IBS, cognitive problems, etc. What I do have is severely debilitating fatigue, hypersomnia, and exercise intolerance. OF all the illnesses I've learned about CFS is the closest to what I have. It is hard when you are so disabled by something but according to the blood work you look normal. I mean, don't get me wrong, I am happy to have good blood work/labs but it belies my turmoil physically. It is such a mystery and it seems like it isn't going to be solved easily. It's hard to stay hopeful. Honestly what I really hope is that I will just get well out of the blue like I did in 2008. If a doctor can do something for me that would be surprising.

Tuesday, March 16, 2010

The Plug - written 3-13-10

Every day is a challenge and the motivation comes from a plug. This plug is charged by universal enigmas which lift the fog above religions and mysticisms. This plug is connected to every galaxy and every planet, every molecule, and every head of hair. Force of life, force of throbbing heart beats initiated by brain signals. It is coming through me and not I though it. For every month there is a day in which I wish to die. In which I wish to pull this plug. A day when the blindness thickens beyond even the flicker of a match. The suicidal ideation pours in like fresh blood expanding in a circle. On this day the gruesome fantasies become pronounced in an otherwise stable mind. Drowning as if I were melting in a river, the hang man's noose, the crack of a pistol, the slow fade of an overdose... these visions materialize into thoughts with no silver lining. They put me on edge as my eyes flicker with fire at the notion of becoming again... reincarnating into a free spirit, one with no shackles of disease upon her ankles and wrists. Even now I seek to plunge into adventures but alas, I am bound. It is not a day in which I fancy to pull the plug but a day in which I feel its surge so profoundly that I desire all I cannot touch, taste, feel, know. Thus my fancies wax and wane in either direction, wanting this life or wanting a death to jump into the next life. How cruel a thing to watch a crow eat all your fantasies while you fall back into an abyss of fatigue. It is as if the vultures encircle me endlessly, waiting ever so determined and patiently to devour me, sensing I am close to death, but there is a long stretch... before I go kaput. Instead I am just near death but also technically living, like a computer with no juice. You can barely use this machine yet it will not die indefinitely. The loneliness in this world is at times so unbearable that I feel on the verge of an emotional death into the hands of numbness so complete it will kill all sense of feeling. It is like walking in the desert, in the blazing sun, with no water for week after excruciating week. Yet then there will be a cactus here, a drip of water there, so that you will be barely sated but not without quenching entirely. I ask myself, is this a way to live?

Sunday, November 29, 2009

A Bolt in the Blue

The worldy are apace, scintillating wildly
Dreaming their untouchable dreams
Feverishly exchanging words and woes and wonders

I walk among tall dying trees

My mere domain encloses upon me, turning me into a castaway

They hear the sounds of pulsing mutability
I hear the sounds of nevermore

My simple existence is failing me
Nothing is aflame
I can no longer touch the tip of heat which is the essence of all vigor

There are traces of old fond ways in the comfort of a familiar embrace
Still I am not able to make it mine

My endless desires must go unquenched

The wordly take progress like kites flying high above
While for me time is bending backwards in retrograde
Trains to other planes do not run
I am transfixed and dislocated in the lost land

I hunger for the color and collision of ample life
I grasp to unearth myself
Fluctuating between worlds of alientation and ennui
The result of the forever static illness cascading down upon me

I am in the shadows hunting an extinct prey
As I fear and desire my own extinction
Is death my savior?
Would emancipation emanate in the eye of a gun?

I stand upon the mesa begging for lightening to strike
For the wild asps in my eyes have died
The bit me, the poisoned me into paralysis instead
I hibernate now, with rusting roots and dead soil

I try to pry the sun with a crowbar
So I can unfreeze all my aspirations
These monotone rhythms slam over my head
and the sun to me is almost dead

I cannot measure the invisible tears I cry every minute of the day
or the wasted time
or the lost life

I seek a bolt in the blue

Friday, October 30, 2009

I am already a zombie so kill me now

There are nights when I simply wish I would somehow be able to die - without the repercussions - just die a peaceful death before CFS can have the opportunity to dismantle me before I REALLY die.  It's complicated.  I never talk to people about this.  I recall reading The Tibetan Book of Living and Dying and there was a section on stages of death.  Well it just so happens that some of those stages, what occurs in them, is totally similar to many symptoms in CFS.  I am hesitant to bust out with the cliche "I feel like a zombie" but it is all too fitting.  Sometimes the only thing that consoles me is if I imagine being worse off, like being blind with CFS or being held hostage and beaten with CFS or being a slave with CFS.  I feel so cheated out of life.  I spend countless hours watching TV online, listening to the iPod, endless sudoku and crosswords... it is a life suited for a very elderly individual, at best.  

Is there anything good in my world anymore?  I am trying to strain my brain, trying to find something.  I don't mean to sound ungrateful.  I guess there are some worse off than I.  I sit in my room and think how these objects all around me used to mean something, now they just sit there because I'm too fatigued to engage with them.  It's hard to even read most of the time.  

I talked to my brother on the phone today and it was weird.  He is so depressed that his girlfriend moved out temporarily but he doesn't realize how fortunate he is to not have CFS.  I feel like that should be obvious to people who are talking to me or something.  It is not obvious.  Everyone seems to have their big problems.  They always seem to be stressed about money or work.  They appear to be sweating the small stuff in my opinion.  I wish, I only wish, I had THAT kind of stress.  The stress that comes with having a life.  

I don't even know how to write anymore.  I feel stifled and uninspired due to the illness.  What can I blog about?  Season five of Desperate Housewives?  How to make lasagna?  Why season three of Angel takes a turn for the worst?  Why Days of Our Lives is slacking in the writing department?  Why Where The Wild Things Are was one of the most boring movies I've ever seen, regrettably so!  That's it, I guess my new mission is to become a critic.  Even though I've NEVER once wanted to be one.  Grrrrreat.  I'm sooooo excited.  Bleh.

I worry a lot.  I worry about my health deteriorating over time and me becoming fat because I can't exercise.  I don't worry about not finding a husband or a life partner because I already took that off my option list.  Who would want to be with someone who can't do anything?  Motherhood?  Forget it.  Master's Degree?  No way.  Martial arts and film production and neopagan rituals and camp-outs and all the stuff I really like to do?  Sorry.  Life has no color anymore.  I want to quit.  I didn't sign up to do this job.  I feel like The Hanged Man in the tarot which is usually supposed to represent a temporary period of suspension, but in my case it is going on far too long.  

Maybe next time I will try, I will grasp, to find a topic that has nothing to do with CFS.  I will turn my head away from the wretched burden and attempt to, well not look for an invisible silver lining, but attempt to DISTRACT.  I'll talk about Owls or something, I've always admired their beauty.  It's true, this illness is for the birds...

Saturday, September 19, 2009

lil rant

I can't say there are so many good things that have come out of this illness.  Maybe a different illness but not this one.  I didn't "discover" anything new about myself or suddenly find a talent I'd been avoiding or ignoring prior to being ill.  This is what pisses me off SO much about CFS.  In fact, I feel like everything I do now is not up to par.  I can't read, write, paint, or draw as well as I used to.  I can't even dance or do martial arts or work out like I used to.  Losing the athletic aspect is a drag especially when you get mad about your illness and need an outlet that is positive, but you don't have the outlet anymore!  The first time I got sick from 2006 to Jan. 2008 I was more able to write and do poetry for some reason.  Not more than when well, but I just wrote still.  These days I almost never write, I mean I am barely writing anything interesting here.  I am zapped and also lacking inspiration but if I weren't zapped I would have all the inspiration in the world.  It's Saturday night - 9:57pm and if I were well I would surely be out on the town or dancing in a night club.  I wish this illness brought something out in me that could be used in a positive way but it just seems to not be the case.  There's no silver lining I can see - this is NOT akin to a Hollywood flick with a moral or happy ending or some type of magical lesson.  Sometimes I just feel like this is a plain waste, utter bullshit.