Life for FMS/CFS Sufferers - sorry, long, but life stories are

[Guest guest]

Quality of Life is a perspective kind of thing. It is what you make it.

I've been diagnosed for 10 years, went through a period of grieving as we

all do. I felt worthless and that my quality of life was zero. I could

occasionally get out of the house to shop, but I never socialized except

occasionally with extended family, so I was very much alone a lot of the

time.

Then in 2001 or so, I heard about Carnie and her success of

weight loss after having gastric bypass surgery. I had heard some stories

about morbidly obese relatives having the stomach stapiling done in the

70's, and that it really didn't work. But I learned that GB was different

because they rerouted the intestines so that the patient actually had

malabsorption of fats and nutrients, so it was much more successful than the

old stomach stapling. I was also told that the patients could not tolerate

eating sugar after these surgeries or they would be sick. I grabbed onto

this " hope " with both hands and jumped on board. I did take about 6 months

to decide and discussed with my husband and then my mother about why I was

doing this. I believed that it was my last and only chance to get back some

quality of life.

Well, I had my first surgery in May of '02, and proceeded to lose 110

pounds. This brought me down to a weight of 204, which was pretty close to

where I was in my college days. I looked darn good, but how did I feel? I

did not feel full of energy and raring to go. There was very little change

in my energy level at all. So, yes it was nice looking good, and I could

move around more easily, but my QOL? Maybe it went up to a #1.

And I slowly started putting some pounds back on. I found out that that

sugar sickness didn't work for everyone. I was still able to eat sugary

food.

So, I convinced myself that what I needed was a more severe surgery

where I would have even less absorption.

I had this revision in March of '05, and in spite of doing everything I

should, I only lost 10 pounds of what I had regained. So my 6 week recovery

from the surgery turned into 18 months of pretty steady depression which

culminated in the fall of '06 with episodes of extreme anger that I didn't

know how to handle. I was having thoughts of cutting myself to ease the

hurting of my spirit.

Thus began a long road with a new psychiatrist to try to balance out my

moods and hopefully increase my energy level. We have only recently found a

good balance of my meds. So, what is my QOL? I am still morbidly obese,

still have FM that keeps me from having a social life and doing much of

anything. But my mood is up, more optimistic. So, if I assigned a number,

I might give it a 3 or a 4. I don't believe I'll ever reach #10 which is

being able to be a superwoman, working full-time, keeping a perfect home,

and being everything to my kids and husband. You know, I am worthwhile and

important to my husband and kids.

I don't know if any of this saga helps you or not. As I said in the

beginning, it is all how you look at it. If we compare ourselves to our

image of perfection that we think we should be, we will think we are zeros.

But, if our expectations are realistic for our FM selves, those QOL numbers

can go way up. Think about it.

Jeanne in WI

> Group I would like you honest opinion/thoughts on what kind of life you

> lead and what your biggest setbacks are due to the above diagnosises and

> the meds you take daily. Most of all what drives you day to day. If you

> prefer you may email me privatly.

>

> Thank you and gentle hugs,

>

> RAB

> Sent from my Verizon Wireless BlackBerry