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.  

30 things - (I found these questions on another blogger's page)

 
30 Things About My Invisible Illness You May Not Know 

1. The illness I live with is: Chronic Fatigue Syndrome (and Bipolar Disorder) 
2. I was diagnosed with it in the year: 2006 = CFS, 1997 = Bipolar
3. But I had symptoms since: around the time I was diagnosed
4. The biggest adjustment I’ve had to make is: not working, not having much of a social life, not dancing or being athletic
5. Most people assume: I am just going through some psychological phase
6. The hardest part about mornings are: getting up, period.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My Computer
9. The hardest part about nights are: loneliness
10. Each day I take ritalin, provigil, and abilify 
11. Regarding alternative treatments I: believe they worked a lot better as a preventative measure when I was healthy, than now 
12. If I had to choose between an invisible illness or visible I would choose: I don't know, they are both hard to live with
13. Regarding working and career: I have had to put all my dreams aside 
14. People would be surprised to know: How extremely difficult this illness is to live with, if only they could live this way for ONE single day, I imagine how much it might change their empathy meters
15. The hardest thing to accept about my new reality has been: that my inner fire cannot be expressed on the outside, that my body has become a prison
16. Something I never thought I could do with my illness that I did was: go out drinking 
17. The commercials about my illness: CFS?  Commercials? lol
18. Something I really miss doing since I was diagnosed is: being adventurous, going dancing 
19. It was really hard to have to give up: everything! 
20. A new hobby I have taken up since my diagnosis is: nothing new, just same old stuff and less of it =(
21. If I could have one day of feeling normal again I would: fly to Brazil and dance my ass off 
22. My illness has taught me: nothing I didn't already know when I was well, unfortunately!!! 
23. Want to know a secret? One thing people say that gets under my skin is: Try x or try y (aka a B vitamin or something) like that would really work, they have no idea how intense my illness is and that it is not due to some vitamin deficiency or some other simple little reason 
24. But I love it when people: Take the time to call me or write emails or visit 
25. My favorite motto, scripture, quote that gets me through tough times is: honestly?  "shit happens" 
26. When someone is diagnosed I’d like to tell them: always remain hopeful that you can be well again 
27. Something that has surprised me about living with an illness is: just how physically slowed down it can make me even at my ripe age of 31
28. The nicest thing someone did for me when I wasn’t feeling well was: just being here for me on a regular basis, watching movies with me, etc. 
29. I’m involved with Invisible Illness Week because: ?  I am not really involved but I think it is a good thing 
30. The fact that you read this list makes me feel:glad that someone took the time to learn more about my illness

Thursday, July 9, 2009

simple update

Well I haven't written much in a while.  My life has slowed down snail-style and I'm also going hermit mode.  I spend way too much time online but I'm too ill to be running around so it's more a matter of limitation than choice.  I'm often on the forums on prohealth and butyoudontlooksick.  I also joined disabledpassions and disabledunited, but mainly in search of penpals, not my one true love.  lol  I find myself doing things I wouldn't have done if I were well, like watching big brother 10 online, marathon style.  What a waste of my time and energy, but it really does help me to focus away from the illness and instead on all these healthy "normal" people trying to win 500,000 dollars.  Now big brother 11 is starting so I invited my Mom to come watch the season's first episode with me.  If I said I didn't feel like a loser for this, I'd be lying.  I applied for SSDI/SSI again and now I have to wait the 120 days.  I don't know what else to say for now except I feel lonely, tired, and am always ever-waiting for remission time! 

Saturday, May 16, 2009

too bad, so sad

Well here I am eating scrambled eggs with salsa that I was almost too ambushed to make.  I am feeling the sense of loss that comes with the CFS lifestyle and I'm not sure watching CFS videos on youtube really helped or hindered with that.  There is one video where a guy appears to be walking with the camera and, until you arrive at his humble abode, you cannot tell that he was in a wheelchair the entire time.  When I saw the chair I just burst into tears.  I just felt like I could relate even though I'm not in a chair, but also, there is a deep down fear in me.  What if I have to be in a wheelchair in the future?  It could happen.  I have difficulty standing a lot.  It is actually easier for me to walk then stand, I know that may sound odd.  Yesterday I was on the computer all day watching experimental videos on youtube.  I have a hard time recognizing that this is my life.  I was telling a friend even if I had to give up dreams such as having a lifetime companion and children, to get my health back, I would.  Nothing compares with health.

Sunday, May 10, 2009

Naked Full Moon Ritual

Last night I went to a full moon ritual, skyclad (aka naked).  I've been to hot springs and been naked with people but never to a pagan ritual as such.  It was really a warm and loving experience.  There were lush, colorful pillows and blankets strewn across the outside patio.  There were three reiki and massage tables.  In the ritual we passed a talking stick around and each shared things about our lives.  This is the first time I really "came out" of the illness closet.  I told everyone there about Chronic Fatigue Syndrome.  I ended up receiving a lot of support, a reiki healing, and two massages!  In this environment I felt a sense of comfort that allowed me to share.  I do not regret that I did so.  Many of us with CFS can just be so closed off or try to hide our illnesses but then we prevent others from allowing the opportunity to lend their support, affection, or simply listen.  I know it can be hard when no one seems to understand and some don't even believe the illness exists but when you have the chance to share in a safe circumstance, I highly recommend it.  This also promotes more awareness about the illness.

An Unquiet Mind

Reading Kay Jameson's An Unquiet Mind is very difficult for me.  She was so fortunate to have been born into this WASPy world which fed her intellect and allowed her to go to UCLA, which she felt was "beneath" other schools her friends went to.  I just feel like she was give so much which is part of what allowed/allows her to be recognized and lends her the fame she has.  I recognize her talent as a writer but I can't help longing to read about other bipolar individuals' experiences, like those who may be homeless or in a lower class bracket, or who may not be caucasian.  Their stories, sadly, may never be told or heard.  Also, having both Bipolar Disorder and Chronic Fatigue Syndrome makes it hard for me to sympathize with some of her bouts of mood extremities.  Even in her depressions she speaks of writing in a graveyard, still being productive persay.  I guess it is best not to compare yourself to others, but at one point I did feel I wanted to become a psychiatrist or psychologist so it's difficult not to wonder about her.  I've just never had such a lifestyle where I could, as she, buy my own horse around the age of 21!  All the things she's done and accomplished make my head spin.  It's hard to not feel inadequate.