Wednesday, September 26, 2012

Tide Shift

Unpredictability can drive one mad - its that old awful psychology experiment with the poor mice - that if they are shocked at intervals they can handle it - but if they are hit at random times they lose their minds.  This is a bit like CFS - I should say if you are lucky enough to move from despair to hope.  The despair phase - that many are living in - is so dark and bleak that there is no roller coaster ride - its a constant sameness - over and over and over - the flip side if you start to get lucky is you begin to get better with restrictions - some days its obvious what put you over the edge - other days its purely random.  This is where you need to learn how to become disciplined in your thoughts and perspectives.  This is a huge challenge - today was one of those days.  I have been so lucky the past few days - I have pushed it and pushed it - craving this crisp fall weather - feeling so blessed i haven't gotten a cold like many have - like the earlier post - not wanting the time to end - the bell to toll.

So yesterday - I did some errands at my parents house - I went to my sisters while she went and got her daughter from pre-school and waited for my nephew to wake up from his nap.  Its so fun to notice the differences in siblings - he wakes up slowly and sweetly - and likes to cuddle and it was nice to have one on one time with him.  Then i went home to lie down for about an hour and met my good friend who has been working non stop for her well needed R&R and we got a pedicure - then she asked if i minded if we went to the mall across the street - so we did - and then I sat on some chairs by the Starbucks in the center with my feet up as she looked around a bit more.  So then we chatted and headed back to her house....okay i could feel it slipping - "it" being me...and so I left ran into the grocery store 10 minutes before 9pm came home made myself some pasta with steak and cherry tomatoes - copying her dinner - and  i could feel the energy drain out of me like a slow leak.

I crashed into bed - my back aching between the shoulder blades - a pulsating feeling in my abdomen - and luckily i fell sound asleep.  But that meant waking up - waking up to the reality of pushing and pushing - and it wasn't pretty this morning.  I could feel myself wake up but dreaded opening my eyes wondering how in the world was i going to get out of bed and eat.  I felt as if i haven't eaten in weeks - yet the thought of food was overwhelming.  I finally managed to eat two eggs and a bit of toast but it wasn't enough by this time my blood sugar had dropped too fast and no amount of juice with salt and water would get me feeling stable.  At these moments my default is panic - it feels as if you are dying - i am seeing bright little stars in the air in front of me - and i really just want to cry - but i didn't - perhaps i am getting a bit used to this - i did need help with making some oatmeal that i ate very slowly - i went outside to get some fresh air - i ate bite by bite ever so slowly and when i felt as if i was no longer drowning - i slowly made it back to bed.  As I was lying there I just kept trying to breathe -and not got overwhelmed - remembering all that i had done in the last few days and reminding myself its only 10am this may all pass. Just remember it will pass.

As i was lying in bed i remembered the dream i had last night - i was back visiting the east side of milwaukee - near lake michigan and i stopped into a coffee shop - and the woman behind the counter kept saying - "don't I know you.." and i politely responded that no - i had lived in this area about 12 years ago - but haven't been back much since..and she kept saying - I swear I remember you...I use to see you running by the lake all the time - and in my dream i said to her - that used to be me that used to be me....and I acknowledged she was right i did use to run and walk along the lake front - but i don't do that anymore...and those words just hung in the air - but i thought for a second - maybe just maybe i can again.

I stayed in bed until after 1pm - and talked to my mom for a bit - then my friend in phoenix - and while i was talking to her i couldn't help it - i just began to cry - i was telling her about the dream and i told her it just feels so cruel to wake up and have it all crash down again - and maybe that's just what i needed a bit of a cry.  Because - look I know it could be worse - and I am feel so fulfilled with all i have been able to do - but I just want that too much to ask for - more? isn't that how we move forward by asking for more and working towards more.  Then the phone rang and my Steph called and her and her daughter stopped by...and the heaviness seemed to lift a bit - i had been in bed all day - and didn't mind staying in bed while steph chilled on the chair in my room and kate played with her new toys she had gotten.  I managed to get out of bed - and while they were keeping me company clean the kitchen and make some lunch.  After they left I went back to bed for awhile and was hoping to get to the park - it has been picture perfect fall weather - i called a few people to see if they could join - but car pools -and nap times just ending etc...but i made the calls and in making them determined i didn't care if i just sat on the bench - Sophie and I would get out of this house - and we did - we made it and even made the short loop - i went to the grocery store again -made some dinner and crashed right back where i started  - in bed - but the thing is - based on how this morning looked i thought i would never even leave my room today - so everything was a bonus - i pushed and i mini crashed - and that is progress.

While i was out with Sue last night she said - don't drop me off without getting your birthday present (my birthday was May 16th) and its been a joke because we see each other plenty and she keeps forgetting - but sometimes its all about timing...and its this metal bookmark with the phrase...
"Where there is Love, there is Life" Mahatma Gandhi - and i smiled - i think this illness has slowly taught me how to receive love - because like i have said - you don't get much to hide behind - when its all stripped away - and had she given that to me in May - i would have loved it - but not really understood it - so thanks Sue.

This illness - i wouldn't wish on my worst enemy (not that i really have any...) but anyways - today was a big step for me - because it began so poorly and I mentally pushed through so it didn't consume me like quick sand and suffocate any joy i had for the day - and instead all i found today was joy around every corner.

My Baby and Me

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