I Wouldn't Choose To Live Like This!
Thanks for publishing Robert Joe Stoutís article, "CFIDS from
a Husbandís Point of View," about the impact of his wifeís illness on their
lives (November CFIDSLink).
I have been fighting CFIDS since early 1999. Iím married and
have a 16-year-old daughter. I have to admit I get very angry that this disease
has put my life in utter turmoil. I try to control my anger. Itís no wonder most
people donít believe those of us with CFIDS are so sick. Some days I canít
believe what it does to me. Those are the days I canít raise my arms or legs to
make it to the shower, let alone work, cook, clean and do all the other routine
things I used to do.
I had to quit working, which has been so devastating to me.
For 12 years, I was with Blue Cross and Blue Shield, where I worked my way up
the ladder. Then wham, I could hardly function. I started sleeping at lunch
time, then I couldnít stay awake at my desk, then I couldnít remember things
that once came so easily to me. I was afraid I was losing my mind. The fatigue
was unreal. Then the pain started, first my legs, then all over my body. I
believe the worst pain was in my pelvic area; it felt like a bad bladder
infection. But after numerous trips to the doctor and no abnormalities in my
tests, the doctors just concluded I was depressed. I kept telling them, "Iím not
depressed!" They had no idea how to help me.
After seeing two urologists, enduring laparoscopic surgery to
check for endometriosis (finding no signs of it) and making yet another trip to
a rheumatologist, they finally concluded I had fibromyalgia in my pelvic area,
causing the excruciating pain. I could go on and on about the unusual symptoms I
have, and problems with health care providers, but what really gets me is the
reaction the public, friends and family have to my illness. People donít realize
what itís like. When I donít feel like talking on the phone, visiting with
people who show up at our house unexpectedly or making it to family events
because Iím too exhausted to shower, brush my teeth, get dressed and fix my
hair, no one really understands.
My husband broke his neck in 1996 on an ATV and was paralyzed
at first, but he regained his ability to walk and move, although he struggles
with pain and nerve damage to his spinal cord. I helped him when he couldnít
move his arms or legs and tried to put myself in his place, but I guess men are
different. He gets tired of hearing what else is wrong with me. He has gotten to
the point where he doesnít want to read anything about my CFIDS. He refuses to
read the article in CFIDSLink about a husbandís point of view. It makes
me angry that he wouldnít want to read about how other husbands cope with this
terrible illness, but I have given up. All I can do is hope he understands.
People think Iím antisocial now and that I just donít want to
do anything. This is not true. I would give anything for this fatigue to
disappear so I could go back to being normal. People get mad if I canít do
things for them like I used to. They say, "You have given up on life." Or,
"Staying in that house and lying around isnít going to make you better. You just
need to get out and have fun." If it were only that easy! Why donít they see I
wouldnít choose to live like this! I cry a lot when no one is around because
people donít understand. I guess thatís why I have so much anger within myself.
Itís awful, but sometimes itís easier not to be around people than it is to
endure the stupid things they say to you. I just end up mad and more stressed
out, and anyone who has CFIDS knows this just makes the condition worse.
Why canít the public be shown that CFIDS is as bad as MS, or
lupus? People wouldnít condemn us like they do now. I blame the medical
profession and the media for this. Maybe someone will get through to these
people. Until then, I pray each night this nightmare will end, and my life will
begin again. I pray there is some doctor somewhere who will find an answer to
this devastating illness.
Thanks, again, for publishing Mr. Stoutís story. Good luck
with your fight!