Monday, March 21, 2005

telling my friends about the EBV

I am writing to you all to because its easier than doing it individually and its easier to explain this way....

some of you know or have questioned where i have been for about a year. I have not been out and about 1/2 as much except for Dar shows or the summer with mary chapin... I have not been able to muster the energy to burn candles at both ends. I have been on my job and without an assistant director, i have been doing two jobs... I have also been teaching... So you say... sharon no wonder you are tired

i have been tired and stayed home a few times and are wiped after events like clearwater... i thought it was because i had been sleep deprived and getting up at 6am and never getting enough rest.... its partially true..

i had a killer case of bronchitis this xmas season and i started to feel that i had not recovered.. during february, a favorite month, i would try to go for my favorite walk and find that i could only muster a few blocks til i wanted to go home to rest.but i would not.. id walk on and keep walking....
i could not make plans because i didnt know if i would have the energy to go.
or if i did what would my energy level be... I could maintain my 5 mile a day walk though... i wanted to be close to home...

I wanted to keep nights free and saturday espeically... My friend nancy asked me if i was depressed. NO my social worker friend chris confirmed he didnt think i had a "mood disorder"
some of you went through my "may be i have a system over run with yeast" and i started reading about "yeast connection" i have alot of the major symptoms of a yeasted system....

i have gained 12 lbs over the summer adn cant get em off etc blah so i took my self to my doctor..
my GYN wouldnt treat the whole being....

but he recommended i get a blood test.... Lyme disease, Diabetes, anemia, hypothyroid ( i have those symptoms too) and epstein barr..

well, i went to my Gp and got my blood done and everything is fine except the Epstein Barr...

i tested postive and mostly you will too- 75% of us do.

but for me it means i have to watch my internal gas tank.... I have to monitor... 1/2 full.and watch when i am getting to a 1/4 tank and i have to fill it up again.. i am learning limits and cant burn the candle at all ends... if i go out on the dar road... i have to temper my night and instead of driving home three hours. and arriving home at the wee hours .... .. i have to stay over and drive the next day...

my doctor suggested.... reduce stress- i ve been looking for a new job anyway and had an interview this week.. i will keep looking to cut down on stress.... who knows... maybe ill move from NYC to a less stressful place.. I was thinking about before the EBV diagnosis....

maintain a healthy diet.... I have already cut out refine white foods and added grains and brown ones and i pass on the dessert cart ( if you know me ... you know i pass on the dessert anyway.. Weight watchers not epstein barr)
and lastly get rest....

i have to learn to temper myself.... and i have to take a page from teh susan moss songbook and learn i cant do it all .. and shouldnt.... i have to pace myself... when i have strength i do what i can... (too much )and if i kick the crap out of myself... i will pay teh piper and be wiped out..

i have felt like me for two days since xmas... the tired is behind your eyes and i get intellectually numb and cant find words... I dont sleep through the night and go to bed before the morning papers being read by aaron brown or before i find out who wins is kitchen stadium..

i am actually fine and learning to manage with a weakened immune system and live with MONOnucleous and is a version of chronic fatigue.....

there is no treatment for EBV and sometimes they treat the symptoms... Mine isnt severe... i call it mild but i have to learn to manage it..
i havent met with my doctor yet because she wants to do a whole physical

its seems like a cosmic joke... all those years of working til 9or 10 pm and then reclaiming my life at 38 for me and now having to slow down... it doenst mean stop but pace myself and get rest when i need it...
not a bad lesson for us all...

i am not sure what the summer will bring or how am about to manage next week... at least, it has a name and is mine....

its weird ... my mom asks me what my energy level is? and i tell her....

.... and i am just now starting to tell people whats going on... and wanted to start with my friends...

sharon