COPING WITH FIBROMYALGIA
(A Male Perspective)
Bob Benoit - AWISH Member
"We fear things in proportion to our ignorance
of them" Livy
Statistics indicate that 4% of the North American population
has been diagnosed with FMS. Of this number, 95% are women and 5% are men.
It is therefore not unusual for me to be surrounded by women whether I
am in a support group or chatting with FM sisters on the Internet. During
the past year, I have discovered throughout the course of various discussions
that there is no male perspective. All of us hurt, we are all fatigued,
we all have many other symptoms and we are all looking for our own way
to cope. Many of us have found methods to alleviate the pain and fatigue,
and all findings are shared. Sadly, there has been no discovery for long
term relief.
I have not yet discovered a method to cope. I have
found that I can escape for short periods, but I always return to reality.
There is so much happening; there are so many things to handle that it
seems as if I am always extinguishing brush fires while trying to stave
off the heat from the forest fire. Just when I am ready to accept a new
pain or a new symptom, it leaves me and it is replaced by something new.
Heck, if I am unable to accept something, how can I learn to cope with
it?
Maybe the first step is to try to UNDERSTAND what FMS
is and what it does. (I have stopped trying to find out why). There are
more than 40 documented symptoms emanating from FMS, so it is difficult
to classify FMS in any one area - or is it? FMS, to me, has become a FEAR,
a dread of the unknown (the unknown being that symptom which will next
rear its ugly head) and it is this fear that I have to learn to negate.
I believe that once I learn to get rid of the fear, I will be on the road
to coping with Fibromyalgia. If I am no longer fearful of facing the onset
of pain, fatigue, headaches, fibrofog, panic attacks etc, I can then begin
to discover how to cope with this intolerable condition.
In addition to the actual physical and mental effects
of fibromyalgia, another major coping area has to do with outside influences
- family, friends, doctors, and employer. It is not all in my head and
I am not procrastinating nor am I lazy. What I have is real and, to be
honest, I have enough trouble trying to rationalize my illness to myself
without having to justify it to others. I wish you would all just take
me at my word and if you don't mind, help me when I ask.
Coping with fibromyalgia - I hope I am able to some
day, but, in the meantime, I am learning as much as I can so that I am
able to live with it.
Vincent Ikerd
Olympia, Washington
I just turned a half a century august 1998. I have
always worked hard and
been independent. In 1992 that all changed.
I was working remodeling homes and woke up one morning with what I thought
was the flu. The problem is that it never went away. I won't
go into all the symptoms and physical pain it causes. That is already
well covered if people want to know about it.
What I would like to address is how it affects
men, in general not
specifically, so all you guys that read this do not
go all macho and let your
testosterone poison your brains. :):);)
We are taught from the cradle that our worth
is tied to our work skills and
our ability to earn an honest living. That ability
disappears when we get the
"Dreaded Decease" as a friend has dubbed it.
I have not been able to work a
steady job for several years. And now the way
the system is fixed if I even
try to work, which I can't, I would loose the medical
help I am receiving.
There is no cure but the medical help is very necessary.
And SSI disability
is shear hell to get on. The system sucks.
Women go through the same thing, but it is a
bit more intense and consistent
for men. If we can't work we are lazy, bums,
freeloaders etc. I finally had to get food stamps to survive. I hate
being such a burden on my family. That is also not fun. I "look"
fine. So I get all kinds of nasty remarks and looks when I use them.
People tell me all the time I look good. Haha. They also say I just
need to push myself more and be tough. Double Haha.
I was divorced a couple of years before I got CFS\FM.
I was determined to
never get behind on my child support. My four
kids are now 19 to 30 years
old. And I am "a deadbeat dad." I tried
to keep up on my payments. But when you can't work it becomes impossible.
If not for some very great siblings I would be in even worse shape.
I know these are also problems for women. And women are about 80%
to 90% the gender most "blessed" with CFS\FM, depending on who's stats
you believe.
But for men, our testosterone and worth are more involved
with our ability to
work. So all you guys out there with the DD,
you are not alone. It helps if you can set your male pride aside
and talk to people about it. And you will find that women are wiser
then men. They are not afraid to share their feelings with others
as so many men are. Men...get over it. It will help you.
One final thing. I make an agreement with
my friends with the DD. If one
of us asks "how are you?", we answer with the truth.
"I feel like a bucket of
dead!" etc. It is liberating to tell someone
that understands. We all, men,
women and children get tired of being tired.
And we get tired of saying "I'm
OK, or fine" because we just do not want to see the
healthy person go blank
and uncomfortable when we say "I feel like bug slime."
LOL.
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