mourning who we were

[Guest guest]

Oh ,

I can SO relate to this. I was exactly the same, working full time,

volunteering thru my church and school, keeping up with the house, 3 kids and

husband, holding all the family holidays (my immediate family is 31), but I

loved it. It made me feel alive. Now, I too, just sit, and watch the dust

bunnies grow, BUT I can work a mean remote control! I miss out on tons of

social events, my kids activities at school (concerts and sporting events,

awards nights, etc). Its funny, I always wanted to be a " stay at home " mom.

Now, I have one out of school, and two in high school.........I'm finally at

home and useless AND they're not even here! Be careful what you wish for

.........?

Just try to stay positive, I have gained 40 lbs over the last 5 years, which

is kinda strange since I eat almost nothing, no appetite most days. I try not

to be too concerned about the weight gain, it is last on my list of problems to

solve (don't think my husband agrees with me tho!)

Hang in there - I know some days are harder than others, but maybe

tomorrow will be better ( I pray) we are always here to support you!

Jane

van Rooyen wrote:

I mourn the person I once was... I used to be a large woman, but very

active and always on the go. Now, I always sit all day, and I have

gained weight. I feel like Jabba the Hut and feel like I am going to

just get bigger and bigger and weigh 1000 lbs. I feel useless. Does

anyone else feel this way?

[Guest guest]

Hi :

Yes, I feel,this way also. Though I am maintaining my weight at one level, I

only eat once a day, dinner, and it can be hard to do that sometimes. But I

am with ya, it really is hard..

Jeanette

[Guest guest]

Hi ,

Could the weight be from the medications?

Thanks,

Jeanette

Re: mourning who we were

> Oh ,

> I can SO relate to this. I was exactly the same, working full time,

> volunteering thru my church and school, keeping up with the house, 3 kids

> and husband, holding all the family holidays (my immediate family is 31),

> but I loved it.

[Guest guest]

I agree completely and my hats off to you.

Kate

In a message dated 5/21/2006 9:10:31 AM Pacific Standard Time,

nancy@... writes:

There is a new person to be now that you have so much less energy to work

with. I have CFS, not fibro, but back and other pains from growing older. I

got sick in 1992. I have a very meaningful life now, tho very different from

the one before. My website can show you some of what I do. www.nancyengel.com

I work performing a few times a year. I work as a temp for Services

for seminars, and for a local university as an actor role-playing with med and

law students. I sing in the choir and edit the church newsletter.

[Guest guest]

There is a new person to be now that you have so much less energy to work with.

I have CFS, not fibro, but back and other pains from growing older. I got sick

in 1992. I have a very meaningful life now, tho very different from the one

before. My website can show you some of what I do. www.nancyengel.com

I work performing a few times a year. I work as a temp for Services for

seminars, and for a local university as an actor role-playing with med and law

students. I sing in the choir and edit the church newsletter.

In my new sedentariness, I write letters to the local newspaper on human rights

issues. I have found new things to do. I crochet and needlepoint and have

recently returned to sewing. The finished products are also good donations to

church auctions and decorate my home and make excellent gifts. When I am

crocheting a big project like an afghan I am constantly reminded that progress

is one tiny stitch at a time. Eventually it is done. I read and it's nice to

just be quiet and appreciate the birds singing. Sometimes I walk for a few

minutes, hoping that one day I can be disciplined enough to walk every day.

I take things in tiny increments, 2-15 minutes. If I do something, that is

better than doing nothing. I go into my yard and inspect my roses and other

plants, pull a few weeds as I see them. When I am exhausted I lie down and now

accept that I won't do anything more this day, or maybe many days until I

recuperate from some activity.

In order to do a big activity that is important to me I plan ahead, like a good

Girl Scout, and rest for a good week so I'll have the energy to get through it.

Adrenalin pushes me through, too. Then, my calendar is kept blank for a week

afterward. Still, I have to cancel things at the last minute.

I hate that I'm 35 pounds fatter than my former fit self. I also hate that I'm

older. But, stress only makes our situation worse so it's better to appreciate

what we do have.

I monitor my diet so I am only eating nutrients (plus a little something with

refined sugar). I eat 3 times a day but often only tiny amounts. And, getting

sleep is important.

Find a way to accept the present so you don't waste energy lamenting too much.

This " talking " to others can be very helpful.

Re: mourning who we were

Oh ,

I can SO relate to this. I was exactly the same, working full time,

volunteering thru my church and school, keeping up with the house, 3 kids and

husband, holding all the family holidays (my immediate family is 31), but I

loved it. It made me feel alive. Now, I too, just sit, and watch the dust

bunnies grow, BUT I can work a mean remote control! I miss out on tons of

social events, my kids activities at school (concerts and sporting events,

awards nights, etc). Its funny, I always wanted to be a " stay at home " mom.

Now, I have one out of school, and two in high school.........I'm finally at

home and useless AND they're not even here! Be careful what you wish for

.........?

[Guest guest]

> Hi ,

> Could the weight be from the medications?

> Thanks,

> Jeanette

I've always been overweight, but I've been used to it since I've been

this way since age 6. However, I did gain nearly 100 lbs since going on

insulin. That makes a difference!!!!

I was taught that if a man is drowning it is irrelevant what is his

religion or nationality. One must help him. It is a matter of the

heart. ~ Irena Sendler

www.RevealedHeartMinistries.org

Books and Stitches-- Cloth book covers http://www.booksandstitches.com

[Guest guest]

Hi :

Sounds like you are doing good with accepting this illness. You have a very

beautiful voice too.

Take care,

Jeanette

Re: Re: mourning who we were

> There is a new person to be now that you have so much less energy to work

> with. I have CFS, not fibro, but back and other pains from growing older.

> I got sick in 1992.

[Guest guest]

Hi ,

yes, I know what you mean, I am trying to keep mine down and it is so

hard...

Jeanette

Re: Re: mourning who we were

>

>

>> Hi ,

>> Could the weight be from the medications?

>> Thanks,

>> Jeanette

>

> I've always been overweight, but I've been used to it since I've been

> this way since age 6. However, I did gain nearly 100 lbs since going on

> insulin. That makes a difference!!!!

>

>

>

[Guest guest]

, you are so right!

I do try to appreciate what I am now, but I think what is hard for me,

personally, is that my husband is having such a hard time with it. So, I have

to watch him go thru the mourning process also. He's lonely. I was the more

active, fun-loving, " let's get out and do something " of the two of us, he called

me the life of the party! Now.............he's looking for other people to go

out and do things with, which I want him to continue to get out, but that look

of disappointment on his face just gets me. He's not happy.........but of

course, neither am I. I feel guilty his life is so affected. I've let him down,

ya know? I know he's committed to me " in sickness and in health " , but who

would've counted on this? There have been many other disappointments in our

life together, I think this is just the final straw for him. I don't believe

he'll leave me, but he will never look at me the same again.

Jane

Engel wrote:

There is a new person to be now that you have so much less energy to work

with. I have CFS, not fibro, but back and other pains from growing older. I got

sick in 1992.

[Guest guest]

I was just discussing this w/a friend of morning the loss of " me " . I

feel like I'm ever so slowly disappearing from life . The joining in of

family and friends functions, even simple activities can be too

much,just talking is horrendous.Loss of friends is great heart ache, and

my looks( skin,hair, and shifting weight ect.)All the changes is

diffenitly different,I guess I get the make over if I asked for it or

not.Good subject,thanks everyone ! susan

" Engel " wrote:

>

> There is a new person to be now that you have so much less energy to

work with. I have CFS, not fibro, but back and other pains from growing

older. I got sick in 1992.

[Guest guest]

You know , sadly I think if this were a disease he understood better, ie:

cancer, MS, leukemia, I believe he would act differently, maybe do things a

little differently That sounds terrible I suppose, but after 25 years

together, I know him well. He is of the " get up, get out, shake it off and

you'll feel better " school of thought. I guess that's what he grew up with and

he doesn't bother to learn very much about this disease. THAT is what hurts me

so bad, becuz if the situation were reversed, I would learn as much as I could

and try to make life easier for him. Cater to his new lifestyle. I suppose

(most) men just aren't the same way. But I will continue to be patient and pray

for his understanding to increase.

Thanks for your kind words and compassion.

Jane

van Rooyen wrote:

Jane, what an honest, painful post you have written about your husband.

It breaks my heart reading about it, and yet I know the same goes for

my husband. He is wonderful, but he really does miss the " me " he fell

in love with, I think.

[Guest guest]

I can relate. My husband is of the " mind over matter " and " your mind

can cure you or kill you " school of thought. While I can agree with

that to SOME degree (I never have a day in bed, even if I only have

enough energy some days to push myself to go sit outside), I DO still

have my hurts and deficiencies ... and they are not deficiencies I had

before all this began in my life ... or to the degree that I now do.

For me, FMS HAS been a progressive illness, despite medical findings

to the contrary. Even my doctor would agree to that, as I now sit with

both DVT and DIC after a " simple and routine " knee surgery. Why?

Because FMS IS an auto-immune disorder. It acts like one, it causes

the issues of one ... so by the duck rule ( " If it looks like a duck,

walks like a duck, quacks like a duck ... " ), it IS one. And my doctor

agrees.

Unlike your husband, mine HAS read all the literature ... and while he

is of the " mind conquesrs all " philosophy, and urges me to get the

better of it, he at the same time gets after me for pushing too hard!

LOL! Go figure.

Anyway, about 5 years ago, I told him to go fins someone who could

help him out hormonally, just so long as I still had him to hold me at

night. Sometimes, we have to make the hard decisions. Because of my

financial condition and having minor children, I needed to find a

compromise. Not what I'd prefer, but you sometimes do what you must.

You are very much in my thoughts.

P.

>

> You know , sadly I think if this were a disease he understood

better, ie: cancer, MS, leukemia, I believe he would act differently,

maybe do things a little differently That sounds terrible I suppose,

but after 25 years together, I know him well. He is of the " get up,

get out, shake it off and you'll feel better " school of thought.

[Guest guest]

Yeah Jeanette, that's what I keep praying for!

Thanks,

Jane

Jeanette French wrote:

Hi Jane,

That's has to be so hard. I don't have a husband or boyfriend, and feel I

would also let them down so much. never want to go out etc...

I hope he can adjust to things. Maybe he will become a home body one day...

Jeanette

[Guest guest]

Peri,

I am 42 yrs old and can totally relate to your situation, except for one

thing. I did not tell him to go out and find some one, I found out that he

cheated on me. I don't approve of this. I feel that if the roles were reversed I

would do whatever I could to help him. I feel that he was being selfish, and he

was only thinking about himself. I commend you for being able to do what you

have to do to survive. I also have a 9 yr old daughter and do not want a

divorce. My husband is really trying to be more understanding and caring, always

a work in progress though. We are celebrating our 15th anniversary in tomorrow

and I am praying that we can continue to grow together and he can accept me for

who I am now, not who he married. Thanks for sharing and God Bless.

Peri wrote:

I can relate. My husband is of the " mind over matter " and " your mind

can cure you or kill you " school of thought. While I can agree with

that to SOME degree (I never have a day in bed, even if I only have

enough energy some days to push myself to go sit outside), I DO still

have my hurts and deficiencies ... and they are not deficiencies I had

before all this began in my life ... or to the degree that I now do.

[Guest guest]

Many now make their own marriage vows. The old vows are in sickness

and in health, until death do us part. The old vows are the ones that

I believe in. To some the vows don't mean anything, the person just

says them, and when it doesn't suit them they want out. I don't

believe many think along the lines that I do.

[Guest guest]

LOL - yeah, maybe THAT'S what I'm doing wrong - a good six pack first! LOL

Take care,

Jane

Jeanette French wrote:

Hi Jane,

Have you tried touching him alot, maybe he will come around, also try a few

drinks, lol

just kidding,

take care,

Jeanette

[Guest guest]

LOL,

Jeanette

Re: mourning who we were

> LOL - yeah, maybe THAT'S what I'm doing wrong - a good six pack first! LOL

> Take care,

> Jane

[Guest guest]

He won't go. He believe if you ignore it, it will go away!

Jane

Engel wrote:

Have you tried counseling?

[Guest guest]

If he won't maybe you can go alone.

Re: Re: mourning who we were

He won't go. He believe if you ignore it, it will go away!

Jane

Engel wrote:

Have you tried counseling?

[Guest guest]

I've considered it, I'm almost afraid of what they may tell me. Thank you for

your concern

Engel wrote: If he won't maybe you can go alone.

[Guest guest]

Hi :

I'm late in reading the messages and just read your's now. I feel very much

the same way as you.

I was always very, very active and never sat still. I always was doing

something. Never had a metabolism problem. Never put on any weight.

Then in 1998 I became ill with CFIDS. I also worked as a school crossing

guard. So all the energy I had was used for going to work. As each year came

and went, I kept getting worse. Also I started gaining weight.

I'm 5 foot 7 1/2 and I have got up to 165 this past year because all I could

do was sit on the couch in between going to work. I was so upset about my

weight that when I came home in the morning I started walking about 10 minutes.

But it wasn't every day. Then I had to be very careful of what I ate.

Finally in April I had to quit work and my appeal court case will be coming

around August. I have just now started doing a little better. I still sleep

11-12 hours at night. But I am able now to mow the front yard. Plus I started

doing situps sometimes. Started at 20 and worked up to 35. Also do alternate

toe touchers and same amount.

Now for lunch I like eating a salad or a cantaloupe. I've dropped down to 155

now and my stomach is finally getting smaller. I had never, ever been that

weight.

Lou

van Rooyen wrote:

I mourn the person I once was... I used to be a large woman, but very

active and always on the go. Now, I always sit all day, and I have

gained weight. I feel like Jabba the Hut and feel like I am going to

just get bigger and bigger and weigh 1000 lbs. I feel useless. Does

anyone else feel this way?

[Guest guest]

--

Hello Yall I really have a problem understanding the who I was thing

because I have had this problem as long as I can rememeber (witch on

some days is not far lol). Any way I do know the weight issue with

fibro and other chronic illness is a problem. A big one so I was

looking up simple recipes to fix for non dairy foods when I stumble

across Sparkpeople.com they dont cost any thing and the tools and

boards to use are awsome and you work at your pass and you can choose

to go by there suggested diet plains or just make your own. The

boards on there are good there are severial groupes posting with

fibromyalgia and the trials of trying to lose the weight so support

there is good. Tools to use for help are good and there are so much

information for support it is awsome. I wish that I could use a magic

pill to lose the weight but I can't so I am greatful I found this

sight because I do not have money to pay for a fancy diet and I do

need to support because i do have my bad bad days and then there is

my bad days oh and did I mention my really bad days (sigh). Not

whining but but that sure would be easy. SO any way I am sorry you

are all struggling as I am. Wish I could take some away. I do not

honestly know what is worse remembering times when you did not have

this monster or not having thoughs kinds of times to remember. But

never less I am just greatful I am making each day. And the weight

with a couple of years lol I am not plaining to rush it and this diet

you go at your pace. They wont you to do baby steps and not dive in

head first and drown. SO check it out.

Gentle Hugs my friends

Michele

In CFAlliance , cindy post wrote:

>

> Hi :

>

> I'm late in reading the messages and just read your's now. I

feel very much the same way as you.

>

> I was always very, very active and never sat still. I always was

doing something. Never had a metabolism problem. Never put on any

weight.

>

> Then in 1998 I became ill with CFIDS. I also worked as a school

crossing guard. So all the energy I had was used for going to work.

As each year came and went, I kept getting worse. Also I started

gaining weight.

>

> I'm 5 foot 7 1/2 and I have got up to 165 this past year because

all I could do was sit on the couch in between going to work. I was

so upset about my weight that when I came home in the morning I

started walking about 10 minutes. But it wasn't every day. Then I

had to be very careful of what I ate.

>

> Finally in April I had to quit work and my appeal court case will

be coming around August. I have just now started doing a little

better. I still sleep 11-12 hours at night. But I am able now to

mow the front yard. Plus I started doing situps sometimes. Started

at 20 and worked up to 35. Also do alternate toe touchers and same

amount.

>

> Now for lunch I like eating a salad or a cantaloupe. I've

dropped down to 155 now and my stomach is finally getting smaller. I

had never, ever been that weight.

>

> Lou

>

> van Rooyen wrote:

> I mourn the person I once was... I used to be a large woman, but

very

> active and always on the go. Now, I always sit all day, and I have

> gained weight. I feel like Jabba the Hut and feel like I am going

to

> just get bigger and bigger and weigh 1000 lbs. I feel useless. Does

> anyone else feel this way?

>

>

>