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On
September 23 1990, two weeks after minor knee surgery, I woke up unable to keep
my balance. My vision was blurred and my legs buckled under me they were so
weak. I had head pressures and couldn’t tolerate sound or light. My eyes
jerked back and forth. I couldn’t remember how to make a simple meal, but had
no appetite, anyway. I threw up every day for a year. This set of symptoms was
later to be diagnosed as ME/CFS.
Not
having found any real help, I survived those first nine years by pretending I
was a Prisoner of War. If they could survive, I could, too, I reasoned. That
helped keep me hanging in.
In
1999, I found an immunologist who ran a treatment center for the ME/CFS. Among
other things he put me on clonazopam to slow down my central nervous system.
Three weeks later, my light and sound sensitivity and eye jerking were
significantly reduced. I could sign onto a computer and watch a TV show
occasionally. Re-entering the world via the internet and meeting other people
with the same illness was a huge step. I was no longer isolated. I later learned
that pacing my energy helped with the symptoms and joined Bruce Campbell’s
pacing groups.
Many people think ME/CFS is just about being 'tired'. Yes, that's one extremely
significant symptom. I could ride my bike 26 miles pre ME and the 'tiredness'
didn't even approach what you feel with this illness since the electrical
potential of our muscles don't bounce back the way they do in healthy people.
(this is measurable, for the record)
To
help save energy and reduce stress, I rely on my answering machine and rarely
use the phone. I limit my time on the computer and can now watch one movie a day
for entertainment (two are too many). I only invite people into my home who
respect my limits. Angry, judgmental people are almost clear from my life now. I
explain the illness once but don’t keep trying to explain myself if a person
doesn’t ‘hear’. I avoid people who tell me ‘if only you would...fill in
the blank...you would be cured’. I have a wonderful, supportive internist,
found after a long search.
Several
other things keep me going emotionally. I took up poetry slowly, once on the
internet, and take great pleasure in expressing myself that way and, over time,
having eight small books of poetry published. I expanded into haiku, haiga and
tanka, Japanese short forms originally. A book of tanka is among my
publications. All of these brought me back to a childhood dream of being a
writer.
I
also love being by the ocean. I’ve sailed down the east coast and over to the
Bahamas, trips beautiful beyond belief.The ocean is only twenty minutes away
from our house when I feel up to going over.
My
ability to walk is very limited so I ride my power chair down our lovely wooded
street. Watching massive iguana, blue heron, and wild ducks roam the pond area
out back all give me great pleasure. Since I also have moderate Multiple
Chemical Sensitivities, house cleaning chemicals and poisons in our home or yard
induce fiery throat, sinuses and extra dizziness so are never used. Someone
cleans our house twice a month so my surroundings inside stay tidy and clean.
I
meditate. I have a small handful of friends who have stuck by me. People I thought
were friends left my life one by one after I got sick.. A devastating blow. One friend of two years never called me
again from the day I got sick. Being unable to function, I had no way to meet
new people. I learned a lot about friendship as the years passed by.
My
husband does all of the many things I can’t do and we’re fortunate to have
enough money to pay someone to drive me to medical appointments.
I
try not to think of what could have been but what my life is now. I forgive
myself (eventually) when I overdo or do other things to make myself worse.
A wonderful award winning film showing the effects of
this illness created by Jen Brea from her bed, a Harvard graduate student when
it hit her, is called Unrest and is available on Netflix
Streaming. The film is also a beautiful love story about how she and her
husband coped with this together.
The next time you meet someone with with this illness, please don't say 'I get tired too'. Try to
understand their frustrations. Don't send them every 'cure' you read about or
tell them you've found the doctor who can 'cure anybody', then get mad if your
advice isn't followed..
Chances are high that they've read or tried everything imaginable and more and are
weary of hearing the
same thing over and over.. If there was a magic bullet , we would all already
be cured. Don't tell them they can cure themselves with their mind. The
mind-body connection is very important, but it's not magic. Ask anybody with cancer
about that one. Anyway, Thanks from me and the millions of others affected.
And thanks for visiting my page!
===============
Books
Those Were The Days
Click to enlarge cover, then back arrow to return to
this page) I printed out my own copies of this fourteen page
prose poem book tying in rock/blues concerts with social or personal
commentaries of the times. I didn't want to sell another book right now with the
proliferation of books all over the internet. I'm
handling all printing costs but need two dollars for postage and envelopes to
defray part of my expenses. Contact me at campris(at)bellsouth.net
My Southern Childhood
(click to enlarge front and back covers, then back arrow to return to this page)
Purchase at Amazon. Print ten dollars. Kindle 2.99. Published by Nixes Mate
Press. 2018
Squall Lines on the Horizon
Purchase at Amazon
for 9.95 print, 2.99 kindle. A love story told in tanka form about three men,
loved and lost, over my lifetime and my love for the sea.
Published by Nixes Mate
Press.. 2017
In collaboration with Michael Parker is When The
Wolves Comes After You Hang On. A book of free verse poetry speaking to
those with pain or chronic illnesses.
Print copies can be purchased at Amazon or,
without the Amazon markup at Blurb.com
Downloads for iPad for 2.99 are also available. Contact me at
campris (at)bellsouth (dot)com
In collaboration with Scott Owens
 Issued
by Clemson University Press December 2012. Please
contact me at campris (at)bellsouth(dot)com to to check on availability or arrange to send a
check if you don't have paypal.. Any
copies from me will be signed only by me. I have only a limited number.You can still order from
Scott Owens for his signature (contact me) . Here is what Ron Moran, author of The Jane Poems and Waiting, and Professor Emeritus at Clemson, says of the book: "Shadows Trail Them Home is an excellent and compelling novel in poetry, an important contribution to the cultural canon of American life, presented in an engaging but disturbing context. It needs to be read by a wide audience, not only those who have faced abuses as children, as the two main characters have, but also by a reading public that treasures poetry that fuses superior writing with major social issues." Thanks
to Shae Jasc Pense for both modeling for and photographing the cover photo. Postage
in pay pal is for U.S. mailing. Contact me if you're from Canada or overseas.
Thanks.
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