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
 

AWARENESS  letter I wrote to Congress about fibromyalgia
 
IMAGINE (what it's like having fibromyalgia) - for those who don't have FMS
 
INTERVIEW WITH DOMINIE (BellaOnline, the Voice of Women) - I talk very personally about my fibromyalgia experience
 
LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN & FATIGUE - well stated
 
LOSSES WE EXPERIENCE WITH THIS ILLNESS - here is one woman's poignant (yet typical) FMS/CFIDS story called "I Have Been Robbed"
 
MISERY INDEX  - "CFS has one of the highest morbidity rates (degrees of suffering) of any illness, rivaling the physical misery of advanced cardiac disease and cancer"
 
MY NAME IS FIBROMYALGIA  - an easy way to explain FMS to friends and family
 
NEUROENDOCRINEIMMUNE DISORDERS  - tremendous description of what it's like to live with a neuro-endocrine-immune illness
 
POEMS ABOUT FIBROMYALGIA  - contributed by creative readers of my site
 
SPOON THEORY  - helps explain chronic illness to healthy people
 
STIGMA OF HAVING FIBROMYALGIA  - negative perceptions our society has about fibromyalgia sufferers and how we can create more awareness
 
THIEF OF MANY LIVES  - great article by Kathleen Houghton
 
TRYING HARDER (and why it doesn't work for CFS)  - a compassionate article

100 Tips for Coping with Fibromyalgia & Insomnia

  My Fibromyalgia Story

  My Chronic Fatigue Story

  My Insomnia Story

  What I Use

II Corinthians 1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God."  Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.

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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought.  This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.