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.

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.  

quote

Compelling quote from p.12 of Chinatown Dreams, The Life and Photography of George Lee...

"If I am old now

I feel no different

than when I was young

and new in this place

and thought I was a chunk

of my homeland

broken off and exported

for a foreigner's pleasure---

the body of a teapot

with a soul of silk."

the hunt continues - 04-29-09

I feel like trying to find local people with CFS is near impossible.  The sand falls through my fingertips as I grasp in near desperation.  I've found yahoo groups, butyoudontlooksick.com, immunesupport.com, blog sites, myspace, facebook... am I missing something?  The closest person I found thus far lives in Diamond Bar.  Don't get me wrong, pen pals are always delicious and yummy but I'm looking for friends to meet up with in person.  I'm also looking to potentially start a support group here.  It seems on many of these sites people are hardly socializing, they're just talking about the next potential cure or that they really have lyme disease or that it's a vitamin deficiency or thyroid disorder.  Personally I've been tested for everything and I accept that I happen to have CFS.  I can't speak for everyone else.  I've tried many things and they just don't work much, aside from all the basic healthy approaches.  So I just don't care anymore, about that stuff.  I want to be healthy, I've been healthy before, but when it happened it was random.  So I'm either going to get better or not, you know?  In the mean time, I would love to have companions who understand.  My friends are great and I love them but they are far busier than I.  I can't work and I don't have a "life" like I used to... so there's a sense of loss there but I'm trying to work with it.  It'd just be a lot easier with other people to talk to and spend time with who have CFS.  So if anyone is reading this who is sick or has CFS please don't hesitate to email or get in touch with me.  Or, if you are a blogger, I'd love to read your blog.  It's just me and my coffee at my Grandfather's house, waiting in the wings.

How do we sickies deal on a daily basis? - 04-28-09

Especially for those of us who cannot work or attend school... how do we deal?  I don't really have the answer, lol except for a few ways I try to spend my time:

1. net surfing

2. phone calls

3. walks

4. bathing

5. swimming

6. meditation

7. tarot reading

8. counseling friends

9. journaling or writing poetry

10. resting

11. visiting with amigos and amigas, attending functions if possible

last night's dream - 04-28-09

There was a lion picture laid over musical notes, like the points in his face were a constellation and they created a song.