Saturday night LIVE

well we are entering week two - and i have to say i am already a bit homesick and my dad is even here.  i'm homesick for my bed and the routine and my friends and family - although i got out just in time because my family all have this awful cough that has been going around and they are knocked out with it - so i did get lucky or this would have been a very different trip.  this is a new place we are staying at and though its beautiful i don't have my window to the world view i had last winter - and i didn't realize - or i guess yes i did how much would miss it.  i'm staying on the second floor so luckily the windows look out into the night sky - but these patio homes in arizona are built to keep the heat out so there are a lot of courtyards to look at which gets me a bit claustrophobic - we are keeping our fingers crossed that by this weekend i can move into our place that is smaller and cozier and has a beautiful view that i crave.

well week one was incredibly productive and saturday the day was paved in gold - i felt like midas and everything was effortless - and that freedom of effortlessness i can't remember feeling in a very very long time at least not for this many hours of the day.  i wanted to be by myself - which is a good feeling so i went to the mall for an eye-brow wax - which please if anyone out there reading even gets a hint that i am going to get my eye-brows wax please stop me - i love my eyebrows and it never matters how much you tell the woman that you just want them "cleaned up" they go to far - anyways i made an appointment at my favorite spa in the world - nordstrom's at scottsdale fashion square - it was my place of recluse when i lived here - and its simple and calming and i love the people there.  anyways when i walked in they were having some event so i walked through the doors of the entrance and was bombarded with people everywhere  - make-up booths set up all over loud music and perfume sections gallore - normally i would have done an about face and get the hell out of there it all being too much stimulation - and it took me by surprise like i was living in some other calm body because i just kind of shrugged - like who the hell would want to deal with this and i got on going upstairs to my shangri - la.

I saw Erin my dear friend who is the massage therapist there and got to see her adorable baby bump - she was booked so i was going back tomorrow.  i awed at the youth of the sweet 26 year old that was doing my waxing and she did genuinely seem shocked when i said i was 40 - and then after i left i wandered a bit - drove back home - ate dinner and drove the block to the resort and walked with sophie where my dad and his friend Shannon were meeting one of Shannon's friends.  I was walking on air - like this is what normal people do...they shop a little - run an errand or two - eat and take the dog for a walk and don't give it a second notice.  this is what this illness brings you a gratitude for the day to day that on some level i don't really wish everyone has- because when you have it its because it was taken away from you.  i got in bed that night and chatted with friends and it was bliss.  pure bliss.

I was ready to dive in...soon

then i woke up to Sunday - and it all came crashing down.  I did get out of bed by 3pm to go get the massage but driving home i was shaking and chasing sprite and cookies to get my blood sugar up as it was crashing as fast as i was.  my dad made me a really nice dinner and i actually had an appetite and thought as soon as i get to bed i will be okay - and i was kind of and fell hard asleep at some point only to be brutally awakened to what ND's cal a healing "crisis" - crisis is a bit tongue and cheek b/c it just means that your body has decided to wake up and start fighting what it has long forgotten about - and well it was a battle.  i was so hot i could hardly stand it i turned the air down to 66 plus i put it on ON instead of auto - yet i had the chills and night sweats and constantly needed to get up and use the bathroom.  I just kept repeating in my head this will pass - this is part of the program you know how it works - just relax into it don't fight it - so i was lucky enough that i would fall asleep for about an hour and then wake up and wish i was dreaming this all over.  its a lonely time when you are sick in the middle of the night - i did call my doctor at 2 am but only the  on call phone not her cell - and i just gave her an update - and then i talked to her at 6:30 am and she had some suggestions that did help.  Mainly homeopathic arsenicum every hour - i had a 10 am appointment this morning and when we were talking she asked about saturday and when was the last time i remember feeling like that....i had to think i said perhaps the last time i was here at the end of treatments i had moments like that - but the last time i can remember a day start to finish like that - about 7 years ago - and i took a deep breathe and felt grateful - there might just be a bit more light at the end of this tunnel than i thought possible.

when i got home my body was still beyond exhausted - i couldn't eat much think much i just lied perfectly still in bed with every joint and muscle so fatigued i felt like i had just skied from morning to night after not being on the slopes in 20 years - but it wasn't that good tired it felt all bad.  the intense fatigue and acches began to lift around 5pm and i even went downstairs for dinner - which my sweet dad had all prepared - i have Alice from the brady bunch disguised as my father without the awful uniform.

as i was lying in bed at the worst of it around 2pm my dad came upstairs and said mail call....and it nearly broke my heart and strengthened my resolve - this is why i do this - this is why....

my first and last name were painstakingly written by this four year old according to my mom and she wanted to know what my "other' name is - but then she got tired and asked if she could tell grandma what to write in the inside.  

while i was waiting in the car after my appointment when my dad ran into the grocery store i was thinking about the parents of autistic children and their symbol the puzzle piece - and i feel like  us CFS'ers have a lot in common with that visual.  i feel like there are some days that this illness has missing pieces from the bottom left or right corner - where if you looked real fast you wouldn't even realize that the puzzle wasn't complete and then other days the piece that is missing is right in the heart of it all and there is no mistaking its presence.  these missing pieces take us on a huge scavenger hunt where the clues are cryptic and often purposefully misleading - and the frustration for trying to find that missing link can be overwhelming - its always hard to go from such a high like saturday- when i walked in from the mall i said to my dad - i feel ALIVE i haven't felt alive in a long time - most often i am faking my way through it - and then to come crashing on sunday was difficult to handle - but i cling to saturday and if saturday is possible - freedom could actually be in my reach - i felt it  - i tasted it - i soaked it in and didn't take any of it for granted - fingers crossed for week 2.

on a side note to my friends and family who call and check in and read and keep updated - there is no bigger gift anyone of you could give me then feeling like i am not doing this alone.