LETTER FROM MAN WHOSE WIFE HAS FIBROMYALGIA
I received
this thought-provoking letter from a man whose family suffers with fibro.
He made some points that are worth considering from "the other side of the
fence." - Dominie www.fms-help.com
Hello;
My wife has fibro, my dad has fibro, his sister has [an autoimmune
disease], and it is looking more and more as though fibro has got ME as
well and has already started taking my hobbies away from me.
So YES, I Definitely have "room to talk" here.
One reason the person with fibro may eventually recieve neither compassion
nor support is the constant bombardment of "I hurt here...I hurt there...this
hurts...that hurts..." and the "I can't do this"..."I can't do
that"... " I did that and now this hurts"..."I did this and now that
hurts"... "If I do such-and-such then the other thing will hurt", with
attending continual moans and groans at all hours of any given day or any
given night.
To hear that all day all night every day every week every
month every year eventually overwhelms and finally "Burns Out" the
other resident family members.
Especially when there is NOTHING anyone else in the family can
DO to stop the pain.
Do Not make the mistake of thinking I'm discounting fibro or also make the
mistake that I'm discounting the living hell of having fibro.
Imagine, for instance, being forced to listen to a continual stream of
those "You Have To Save this starving child, her/nis name is..." ads since that
is the one and only thing broadcast on television or radio and there is no OFF
switch on the device.
You KNOW it hurts to starve.
You know it is Good to help them.
You know abandoning the child is wrong.
You know the right thing to do is to help them.
But, there is ONE of YOU and Fifteen Million of THEM.
You know you SHOULD help them.
And MORE are born every day!
Ahh, forget it, I'm losing ground, and no one can hold back the
tides anyway.
Eventually, a good majority of the population would either simply tune it
out, become numb and apathetic to their suffering, or take the more direct
action of putting a brick through the television screen.
Their psyche can't take any more of the overload.
For my OWN sanity and preservation, I CAN'T get excited about it
anymore: I just don't have the extra energy.
You REALLY want to help people with Fibro?
Then help their familiy members deal with THAT.
======================================================
FROM DOMINIE: I felt that
his letter had a lot of merit. FMS/CFIDS affects the entire family
negatively. After reading his comments, I decided to TRY not to weigh my
husband down so much with my afflictions. He is already carrying the
lion's share of the load with housework, yardwork, etc. If I can act
cheerful around my students and people at church and in the community, I can try
at home too. However, at home I tend to "let down my hair" and be (too
much) myself. I didn't realize how I may be coming across to my dear
husband. I guess those of us with FMS/CFIDS are so puzzled by our
mysterious symptoms that we tend to talk about it a LOT. But it would be
hard to be on the other side of the fence--like this man is--and feel helpless
to do anything about our loved ones' suffering. The internet is a great
blessing--we can connect with others who have this illness and talk our hearts
out, thus sparing our exhausted family members! Below is the email I wrote
that this man responded to.
July 12, 2006
Dear Fibro Friends,
One of the first things fibromyalgia patients discover is
that almost no one understands their illness--not even their own families
or doctors. Instead of receiving compassion and support, people with
fibromyalgia are often treated with scorn, snide remarks and
ridicule.
Below is a list of articles on my site that can help "normal" people
understand people with fibromyalgia. I also have LOTS of medical and
research articles at www.fms-help.com
which prove FMS/CFIDS is a REAL illness. These can
be useful in educating skeptics and "mockers." It's sad that this situation has to be addressed, but unfortunately
misunderstanding is the "norm" with FMS/CFIDS.
Interestingly, the first-ever large population-based
analysis of U.S. Fibromyalgia incidence was released last week and
indicated an occurrence rate of about 4.2 percent
(wow....that's millions of people!), so awareness will be
growing.
I hope the links below are helpful. Don't let the
"turkeys" get you down!
Dominie
100 Tips for Coping with Fibromyalgia & Insomnia
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE