When I was in third grade, Mrs. Kessler had these little reading books that looked ancient - and they contained little songs that helped you read to a tune. My favorite went something like this... Blue shoes - blue shoes - red and pink and new shoes - which one will you choose - if you could buy? I can't seem to remember the exact phrasing - but it went something like that, and every now and then that tune pops into my consciousness. I feel a bit like that when I am writing this blog...which way will i choose.
When I set out to write this blog, it was a way for me to find a morsel of control when i had felt i had lost all control to the isolation and ever changing symptoms of this illness - it was a way to find a voice to yell and scream at It - to reflect on It - to ponder It - to track It - to learn from It - and as I have said before it took a very special person - to show me the path and give me the courage to begin it - again, thank you jules (which i always called you Julie - but so many called you Jules and it just seems to fit better - hope you don't mind :) you seem to help me even now that you are gone.
I had very few expectations - some have been met others have not. I have found surprises along the way - in the community of bloggers that also feel quite helpless with the lack of understanding, treatment and path of this illness and those friends, family or strangers that have taken the time to read and hopefully it has given those a better understanding of "the new me" the person "living with this illness." I have found courage, strength, knowledge and a sense of belonging - this i had not expected. I have also found disappointments along the way. However, I choose not to be bothered by those - its the risk of a writer - like any artist - you must decide that you are going to charge forward - do the best you can at any moment and time and let the pieces fall where they may.
The greatest challenge I find about writing this blog is which way will I choose...deciding how I will write it. Since I always write it directly on the blog template, not writing it on word and cut and pasting - its a spur of the moment thing. Often things I want to write about come to me during the day - or nag at me at night - or someone will say something and it inspires me to share. But just as often I decide - like today - that I have taken too long of a break from writing - and it keeps me sane so pick up the damn laptop and whatever pours out - just let it rain.
I try hard for this not to be a journal or diary - those immensely private thoughts that are kept under lock and key - and are vented often in frustration or bliss that could come back and hurt someone or in some case really just be of no interest to most.. like a dream log - they are never as interesting to others as they may seem to ourselves -
Its been a rough two to three weeks - moments have been good - but as a whole i often try to get through minute by minute. At times I have felt broken - mentally, emotionally and physically. Food seems to taste like poison and my body seems to react in that way - consequently I have lost about 6 lbs in this time frame (i guess here is where the "sick weight" has been a blessing). I have had moments that have tested me and I have looked in the mirror and sometimes see a ghost of myself with a face staring back at me that i do not recognize. I also have had moments of absolute clarity - and moments of pure joy - I have had a people that have disappointed me and almost broken me and those that have lifted me up when i was willing to accept their help. I have forced myself to be comfortable around others when I don't feel well - where I normally retreat and want to be alone because I feel so stressed and anxious when my body gets so depleted - but I have dug deep and allowed myself to be who I am at this moment in time - and sometimes its not a pretty sight - and I have begun to try and stop hiding that part of me as if it was my fault.
A friend of mine when she was going through a really rough time use to do this meditation - or better said sequence of thoughts where she would imagine where she was and work outwards and then back....here it goes...in my bed...in my house...on my street...in elm grove...in wisconsin...in the united states..in north america..on the earth....past the earth into the sky...to the moon...to the stars..to the universe and then begin to look back from so far away where you are just a spec in something so large and come back home. She would visualize herself like this first as big then as small part of something big and then back again - and that's a bit how i feel right now - when everything around you seems to be coming at you too fast - I remind myself to Just Breathe, 1,2, 3 and leave myself and go beyond myself - feel free of myself and then slowly come back.
I try my best to blog - write something with an intent that focuses on a specific aspect of my life - and someday soon i hope to be strong enough to work on a book - I try and up the integrity of the writing to surpass the level of journaling or a diary - sometimes i succeed and other times i don't - but i noticed i have written close to 150 posts - and in the days that i feel i accomplish little - i can look at that number and feel proud - and reflect that for all this illness has taken from me - and often how i feel it has used and abused me - i can look at that number - 145 and think...right back at you neuro-endocrine-immune disorder - i have used you too and no matter what I will win.