
What
is "May 12 / International Awareness Day"?
May 12 has
been chosen by many national groups as International Awareness Day for
Chronic Fatigue Syndrome. May 12 is the birthday of Florence Nightingale,
who had an undiagnosed, debilitating disease for many decades. Despite
her constraints, Nightingale was able to found the International Red Cross.
The concept
of May 12 as International Awareness Day was developed by Tom Hennessy.
He has now
founded the RESCIND organization (Repeal Existing Stereotypes about Chronic
Immunologic and Neurological Disorders) which promotes solutions for CFS,
fibromyalgia, multiple chemical sensitivities, and Gulf War Syndrome. RESCIND
can be contacted at 9812 Falls Road, Suite 114-270, Potomac, MD 20854,
USA, fax: (after 6pm ET) 1-301-983-5644, Internet: MAY12@American.edu.
The Butterfly
is the symbol of the M.E./Chronic Fatigue Syndrome Society of Victoria
Inc. in Australia and was also used there for the International ME/CFS
Awareness Day badges.
This is a
picture of me taken two years ago. I usually don't take pictures of me
because I'm usually the one behind the camera taking the pictures, but
I had a great opportunity to have a professional photo shoot and the end
result was this picture. I don't look like this everyday....who could?
But I now have a better understanding of why models and actresses look
so good in pictures and movies...they have professionals doing them up
every day. Plus who would ever guess from this picture that I have CFS(Chronic
Fatigue Syndrome). I think that's the problem with having one of the so-called
"Invisibile Disabilities" - you can't see it so therefore everyone
thinks you don't have anything. If you can't see it - you must be Okay!
Hundreds of thousands of us are living proof that that is not true. There
are hundreds of "Invisible Disabilities" and not one of them
shows but that does not mean that we are not disabled.
In creating
this site and gathering all the CFS material and links, I discovered many
things. Here are a few things that I learned on my journey of the CFS world
(links and home pages of other CFS sufferers).
1) I learned that although we are all very individual people, we all share
a common bond - CFS. It's amazing reading other people's stories and see
how similar they all are. We have so much in common but I guess that goes
for any disease, illness or disability. In putting together this site,
I am using some of the material gathered from other sites because if someone
can say it better - why would I try to top it?
2) Another discovery was to learn how we are all not only struggling with
this illness ourselves, but we are all desperately trying to make others
aware of it and help them understand it. Why?
I guess Lindsey said it best again (so why try to top what she said):
"One of the hardest things about CFIDS that I've had to deal with
is how others deal with my CFIDS. The majority of the people I've
encountered stare at me blankly when I tell them I have CFIDS; they've
never even heard of the disease, let alone do they know anything about
it. Even after three years, I still don't quite know for sure how to respond
to this...how do you say enough to explain the disease and your situation
to someone, without saying too much? One of the hardest questions I have
to answer on a day-to-day basis is "How are you?". Is it better
to do the polite thing, lie, and say "Just fine, thank you!"...
or to just be honest and say "Rather *insert expletive here*"?
On the other hand, when someone does know something (or thinks they
know something) about CFIDS, it can be almost as bad. Because we still
don't know exactly what causes CFIDS, it tends to have a reputation as
not being very credible - it's "the yuppie flu", or "hypochondria",
or "just in your head". Any person who has lived with CFIDS can
tell you that all of these are NOT true...CFIDS is a very, very real disease.
I look like a perfectly normal, healthy person. On one of my good days,
if you saw me walking down the street you would never be able to guess
that I have a chronic illness. This is a mixed blessing...on one hand,
I'm never discriminated against for looking disabled or handicapped. On
the other hand, it is very difficult to get people to believe that I'm
sick.
We need to teach people what CFIDS is - a very real, very devastating disease.
The more that people know, the more that people living with CFIDS will
be believed and receive the help they need."

Lindsey continued
with the 5 Things she wants you to know about her and CFIDS. I think she
speaks for all of us when she says:
Before you
read anything more on this page....please read...
5 Things I Want You to Know About Me and CFIDS
# I have a chronic
illness. By many definitions, I am considered handicapped or disabled.
I accept this.
# CFIDS is a part of who am I...but it does not make me who I am. At times
it controls my body, but I will no longer let it control my life. As someone
once said so brilliantly, "I may have CFIDS...but CFIDS doesn't have
me".
# I am not bitter. I am not angry. I am no longer depressed.
# I don't want anyone's pity...I don't feel sorry for myself, and I don't
see why anyone should. I believe that I'll never be given more than what
I can handle...and that anything that doesn't kill me outright will make
me stronger. I have become a stronger person because of this illness. Because
of this illness, I have found out where my priorities stand...I have found
out how I want to live my life. I feel lucky.
# The best feeling I have ever gotten from being online is when someone
e-mails me and says, "I read your CFIDS page, and I learned something".
That's why this page is here. Nothing makes me feel better than knowing
I have educated someone else...someone who will now no longer discriminate
against me, or not understand me, or doubt my illness.

I guess that's
all any CFS person wants - to educate those who don't have it so you'll
not only know more about CFS but will understand us and won't doubt that
we are ill.
We've all had experiences with others and their lack of knowledge about
CFS and each of these experiences leaves it's mark. I remember parking
at a mall (I wasn't having a good day but I needed groceries) and I pulled
up, parked in Disability Parking, put up my Disability Parking Permit and
got out of the car. A young man about 35 years old was standing at the
entrance and when I walked by him he said "Hey, don't you know that
you're parking in a disability parking spot?" I turned and said "Yes,
I know and I have a disability parking permit".
He then made a snide remark "Yeah, right! Who did you borrow it off
of?". I was hurt by this but went inside and picked up the few things
I needed. When I was returning to my car, he was still there so I thought
that perhaps if I explained about my illness - he may be less judgemental
about others, so I approached him and said "Excuse me, but are you
aware that there are many disabilities that are called 'Invisible Disabilities'
because although the person is disabled, it does not show. There are hundreds
of disabilities that the government states are legitimate and thus provides
Disability Parking Permits to them. They don't give them away and they
are difficult to get as a doctor has to fill out a form and it must accompany
your application for a permit". He just acted like I didn't exist
and I realized that I was going to change his mind about me or my illness,
so I left. We go through similar experiences every day of our lives.
We must put up with the rude and insensitive comments because we aren't
missing a limb.
I do not always park in Disability Parking, especially if I'm having a
good day. I don't abuse my permit and perhaps take a spot from someone
more disabled than myself.
I will usually park in a normal spot (as close to the store as I can) when
I'm having a good day and am able to make that walk. It is only on bad
days that I park in disability parking spots because that means that the
walk is too much for me and therefore I use it. I get looks from everyone
when I do use them and they aren't compassionate looks - they are looks
of disgust that I would take a spot reserved for disabled people (simply
because I don't have missing limbs or a wheelchair).
There are many many CFS sites and home pages of CFS Sufferers and it would
take a great deal of time to visit and read them all, but please do take
some time and read up on CFS and visit some home pages and see their stories.
It takes a great deal of effort and energy to create a web page (especially
with CFS)so don't let all of our efforts be wasted. Visit,read,learn and
show your appreciation by signing their guestbooks and letting them know
you were there.
May 12th is CFS Awareness Day but everyday should be a day when you take
the time to learn about CFS. This disease is spreading faster than AIDS
and no one is immune from catching it. Maybe someday, someone you know
or a family member may end up with CFS and you'll be grateful (and so will
they) that you took this time to become aware and gain some knowledge regarding
this devastating illness.
If you are planning
on leaving after this page, please sign my guestbook. Thanks!!
 
  
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