Re: No friends

[Guest guest]

Hi ,

I kind of feel like that too. It's because we all know that what the other is

going through is real. My closest friends here where I live, are ones that have

this or they know someone who has it. They understand too.

On Saturday night I had an awful night. I couldn't get to sleep, even though I

was exhausted. Finally was able to sleep around 6 am. I didn't make it to

church and I slept most of the day Sunday and all night Sunday night. And still

not feeling real great today. I had felt so good last week and had really tried

to pace myself so this wouldn't happen. (straying from the point - sorry) One

of the men at church told my husband that my insomnia was because of hormones

and my husband should make sure I got checked out. Since I am on RHT I'm sure

hormones aren't it. Then I got a call from this guys wife, whom I is one of my

good friends. She left a message on the answering machine that maybe I should

get out and do more then I wouldn't have trouble sleeping. I guess I'm so sick

of trying to educate people that think they know it all. It is frustrating to

me.

I really appreciate all of you and what you share and how you encourage one

another. Thanks for being here!!

Judi

No friends

Has anyone noticed the longer you are ill,the less friends you have? You

all are my only friends now,and we have never met in person. Pitiful. I am

glad though. All of you have been what a friend should be to all of us on this

list. Thanks!!

[Guest guest]

Hi , Yes My good friends well I thought they were all but a few quit

coming around, boy I'm glad they are not members of my family, cuz they would

probaly desert them too...

No friends

Has anyone noticed the longer you are ill,the less friends you have? You

all are my only friends now,and we have never met in person. Pitiful. I am

glad though. All of you have been what a friend should be to all of us on this

list. Thanks!!

[Guest guest]

oobadooba wrote:

> Has anyone noticed the longer you are ill,the less friends you have?

> You all are my only friends now,and we have never met in person.

> Pitiful. I am glad though. All of you have been what a friend should

> be to all of us on this list. Thanks!!

Oh !

You really said it for me here too. I have a couple of new neighbors

that are casual friends but little by little the others have all

deserted me when I could (or would) no long *do* for them. I have felt

totally abandoned at times. I believe God allows things to happen for a

reason so I don't dwell on this thinking and if you mention it to most

people, you have to listen to the " depression diagnosis " you don't know

you have blah, blah. Healthy people don't or won't comprehend the

magnitude of life changes this illness creates. I no longer reach out

to healthy people because the judgements and uninformed " misdiagnosis "

are just TOO PAINFUL. Why don't you................you know the story.

I too am grateful for my cyberfriends, where someone understands my

pains, fears, and frustrations and we can all pool our remaining active

brain cells to correllate our experiences into a possible cure, or at

least some treatment. Having this list adds a whole new dimension to

our lives, and I no longer feel so isolated and misunderstood, which to

me is as devastating as the illness itself.

I'm glad we all have each other!

Marcia

[Guest guest]

Hi all,

you are my almost only close friends, thanks. Everything what has been told

about this topic is true and I couldn't express it better. Stania

-----Pùvodní zpráva-----

Od: Marcia Grahn <mgrahn@...>

Komu: onelist <onelist>

Datum: 26. dubna 1999 18:30

Pøedmìt: Re: No friends

oobadooba wrote:

Has anyone noticed the longer you are ill,the less friends you have?

You all are my only friends now,and we have never met in person. Pitiful. I

am glad though. All of you have been what a friend should be to all of us on

this list. Thanks!!

Oh !

You really said it for me here too. I have a couple of new neighbors that

are casual friends but little by little the others have all deserted me when I

could (or would) no long *do* for them. I have felt totally abandoned at times.

I believe God allows things to happen for a reason so I don't dwell on this

thinking and if you mention it to most people, you have to listen to the

" depression diagnosis " you don't know you have blah, blah. Healthy people don't

or won't comprehend the magnitude of life changes this illness creates. I no

longer reach out to healthy people because the judgements and uninformed

" misdiagnosis " are just TOO PAINFUL. Why don't you................you know the

story.

I too am grateful for my cyberfriends, where someone understands my pains,

fears, and frustrations and we can all pool our remaining active brain cells to

correllate our experiences into a possible cure, or at least some treatment.

Having this list adds a whole new dimension to our lives, and I no longer feel

so isolated and misunderstood, which to me is as devastating as the illness

itself.

I'm glad we all have each other!

Marcia

[Guest guest]

-- You took the words right out of my mouth!

All I can say is that I am SSOO grateful to have this

computer and to have met so many great people. You

all have in a way, become my friends. Thank YOU!!!

--Michele U.

--- oobadooba <oobadooba@...> wrote:

> Has anyone noticed the longer you are ill,the less

> friends you have? You all are my only friends

> now,and we have never met in person. Pitiful. I

> am glad though. All of you have been what a friend

> should be to all of us on this list. Thanks!!

>

>

<HR>

<!DOCTYPE HTML PUBLIC " -//W3C//DTD W3 HTML//EN " >

<HTML>

<HEAD>

<META content=text/html;charset=iso-8859-1

http-equiv=Content-Type>

<META content=' " MSHTML 4.72.3110.7 " ' name=GENERATOR>

</HEAD>

<BODY bgColor=#ffffff>

<DIV><FONT color=#000000 size=2>Has anyone noticed the

longer you are ill,the

less friends you have? & nbsp; You all are my only

friends now,and we have never

met in person. & nbsp; Pitiful. & nbsp; & nbsp; I am glad

though. All of you have been

what a friend should be to all of us on this

list. & nbsp;

Thanks!! & nbsp; & nbsp; & nbsp;

</FONT></DIV></BODY></HTML>

_________________________________________________________

[Guest guest]

Judi Hoynacki wrote:

> Hi ,I kind of feel like that too. It's because we all know that

> what the other is going through is real. My closest friends here

> where I live, are ones that have this or they know someone who has

> it. They understand too. On Saturday night I had an awful night. I

> couldn't get to sleep, even though I was exhausted. Finally was able

> to sleep around 6 am. I didn't make it to church and I slept most of

> the day Sunday and all night Sunday night. And still not feeling real

> great today. I had felt so good last week and had really tried to

> pace myself so this wouldn't happen. (straying from the point -

> sorry) One of the men at church told my husband that my insomnia was

> because of hormones and my husband should make sure I got checked

> out. Since I am on RHT I'm sure hormones aren't it. Then I got a

> call from this guys wife, whom I is one of my good friends. She left

> a message on the answering machine that maybe I should get out and do

> more then I wouldn't have trouble sleeping. I guess I'm so sick of

> trying to educate people that think they know it all. It is

> frustrating to me.

>

>

>

> Hi Judy!

>

> This is exactly why I have just given up on people and isolated myself

> for self protection and preservation. Maybe it isn't healthy to be

> alone so much, but it certainly isn't healthy to be treated like a

> LAZY FOOL every time you get to know a healthy person. I got it from

> my family and friends and just can't take it anymore. I don't know

> any other people with our illness and just can't afford to waste what

> little energy I have running around looking for friends who believe

> me. After awhile you realize you don't really need people as much as

> you thought you did.

>

> I feel like screaming at new people I meet " HELLO, my name Marcia and

> I'm LAZY and CRAZY, any more questions??????????????

>

> Marcia

[Guest guest]

In a message dated 4/26/99 9:04:37 PM Central Daylight Time,

judihoynacki@... writes:

oh, Judi..<groan> i'm so sorry you had to put up with that. " well-meaning "

people who have no concept of serious illness are *so* hard to take.

> One of the men at church told my husband that my insomnia was because of

> hormones and my husband should make sure I got checked out. Since I am on

> RHT I'm sure hormones aren't it. Then I got a call from this guys wife,

whom

> I is one of my good friends. She left a message on the answering machine

> that maybe I should get out and do more then I wouldn't have trouble

sleeping

[Guest guest]

Hi Marcia,

You wrote: " I feel like screaming at new people I meet " HELLO, my name Marcia and

I'm LAZY and CRAZY, any more questions?????????????? "

I've always been a people person. My mom used to say that my biggest problems

was that I wanted everybody to like me. Well in almost 50 years, I have learned

that it doesn't matter if everybody likes me. I can say " No' with out feeling

quietly. Now I just have to learn not to get in these peoples faces and tell

them off. That's not the sort of thing I would normally do. But I'm not normal

anymore. And I've probably never been normal. Ask a few of the friends I grew

up with they would tell you,

Isn't it a shame though that we are made to feel LAZY and CRAZY? Thank God for

this list. This lets me know that I am not CRAZY OR LAZY!!!!!

Thanks Marcia for putting it so well. You always do,

Judi

[Guest guest]

Hi Doris,

Thanks for the encouragement. I'm not a rude person either but I'm afraid I

will be rude to these two if they say things like that in my hearing where I

can get to them. The wife, I really though she would have understood. She

has been battling with a past employer that had asbestos in their building

and she believes that it cause her throat problems. All the doctors them

told her that it was in her head and sent her to the therapist. She was

really upset about that. Guess my problems don't compare. Not in her mind

anyway.

Oh well, I'll just grit my teeth and smile and hope and pray that they never

have to go through something like this. And if they do, I will be there to

understand and encourage. Guess that it called 'turning the other cheek.'

Judi

[Guest guest]

Oh God, Judy. Much sympathy having to put up with

that. That's worse than the " I must have that, I'm

tired a lot, too. " response.

Reminds me of my mother-in-law's first response when

we found out my son is dyslexic. She suggested we

punish him until he figured out he had to learn to

read. I suggested to her that I could do the same for

her until she used the computer as well as my son did.

Seemed to get the message across.

I think the only reasonable response to such ignorance

has to be harsh. I am not general a mean person, but

it's not like information about this illness hasn't

been around for a while. Where I am currently

working, when the info about ENADA hit the mainstream

press, five people made sure to tell me about it and

hope it helped my husband. And that was when I had

only been here two weeks. There are good folk and then

there are dolts.

Doris

--- TheFez062@... wrote:

> From: TheFez062@...

>

> In a message dated 4/26/99 9:04:37 PM Central

> Daylight Time,

> judihoynacki@... writes:

>

> oh, Judi..<groan> i'm so sorry you had to put up

> with that. " well-meaning "

> people who have no concept of serious illness are

> *so* hard to take.

>

> > One of the men at church told my husband that my

> insomnia was because of

> > hormones and my husband should make sure I got

> checked out. Since I am on

> > RHT I'm sure hormones aren't it. Then I got a

> call from this guys wife,

> whom

> > I is one of my good friends. She left a message

> on the answering machine

> > that maybe I should get out and do more then I

> wouldn't have trouble

> sleeping

>

>

>

>

------------------------------------------------------------------------

> Tired of empty chat rooms and out of date bulletin

> boards?

> http://www.ONElist.com

> ONElist: Making the Internet Intimate

>

------------------------------------------------------------------------

> This list is intended for patients to share personal

> experiences with each other, not to give medical

> advice. If you are interested in any treatment

> discussed here, please consult your doctor.

>

_________________________________________________________

[Guest guest]

Just awhile ago,one of my 9 sisters emailed me and asked if I had considered

depression as a cause of my problems. DUH....but I try not to act angry or hurt

anymore......The first thing I thought of when I first got too ill to work

anymore in 94,was AIDS,since I was a nurse who took AIDS cases often, and then

depression/job burn out..I often worked 80-90 hours a week...the lazy person I

was......I was sickly before I became disabled from the worsening of symptoms in

94 as it was.....(I think I told you I have been ill all my life) ..I have

been on different meds and they made me worse. OF COURSE I CONSIDERED

DEPRESSION AS A DX......I was a good intelligent nurse and had some sense about

me. .DUH,I want to scream everytime someone has asked me that....Through the

years,my sisters have all asked me that question...they love me and I know they

just want to help..... I was told by several good doctors many times that I do

not have primary depression symptoms. The psychiatrist recommended that i see an

infectious disease specialist.... Why is it so hard to believe someone who was

once active is now so ill?? I am so chemically sensitive....I do not take

meds due to the SE are worse than the symptoms for me...I tried several meds

before..nothing helps.. Thanks for listening to me gripe! .

Re: No friends

oobadooba wrote:

Has anyone noticed the longer you are ill,the less friends you have?

You all are my only friends now,and we have never met in person. Pitiful. I

am glad though. All of you have been what a friend should be to all of us on

this list. Thanks!!

Oh !

You really said it for me here too. I have a couple of new neighbors that

are casual friends but little by little the others have all deserted me when I

could (or would) no long *do* for them. I have felt totally abandoned at times.

I believe God allows things to happen for a reason so I don't dwell on this

thinking and if you mention it to most people, you have to listen to the

" depression diagnosis " you don't know you have blah, blah. Healthy people don't

or won't comprehend the magnitude of life changes this illness creates. I no

longer reach out to healthy people because the judgements and uninformed

" misdiagnosis " are just TOO PAINFUL. Why don't you................you know the

story.

I too am grateful for my cyberfriends, where someone understands my pains,

fears, and frustrations and we can all pool our remaining active brain cells to

correllate our experiences into a possible cure, or at least some treatment.

Having this list adds a whole new dimension to our lives, and I no longer feel

so isolated and misunderstood, which to me is as devastating as the illness

itself.

I'm glad we all have each other!

Marcia

[Guest guest]

Speaking of " friends " . I come UNGLUED when I try to explain my cognitive

problems to " friends " and all I hear ie, " Oh yeah, THAT HAPPENS TO ME. " Or,

explaining the profound and relentless fatigue, " Oh, I get tired too. Oh, I

need a NAP too. " Christ.......

[Guest guest]

oobadooba wrote:

> OF COURSE I CONSIDERED DEPRESSION AS A DX......I was a good

> intelligent nurse and had some sense about me. .DUH,I want to

> scream everytime someone has asked me that....Through the years,my

> sisters have all asked me that question...they love me and I know they

> just want to help..... I was told by several good doctors many times

> that I do not have primary depression symptoms. The psychiatrist

> recommended that i see an infectious disease specialist.... Why is it

> so hard to believe someone who was once active is now so ill?? I am

> so chemically sensitive....I do not take meds due to the SE are worse

> than the symptoms for me...I tried several meds before..nothing

> helps.. Thanks for listening to me gripe! .

,

My sister is convinced my condition is depression. This just is so

painful to be so misunderstood I can't even talk about it. My parents

went to their graves not believing me. It would be like not believing

they are dead in my mind! They have sympathy and understanding for

others, but not their own. So sorry you have to go through it too, but

so many CFSers I have talked to with a sister have this problem. But

no answers.

Marcia

[Guest guest]

In a message dated 4/29/99 12:42:43 PM Eastern Daylight Time,

mgrahn@... writes:

<< This just is so

painful to be so misunderstood I can't even talk about it. My parents

went to their graves not believing me. It would be like not believing

they are dead in my mind! They have sympathy and understanding for

others, but not their own. So sorry you have to go through it too, but >>

Marcia, this is so common that it is tragic. So prevalent with this illness,

that scientists have even written about it in some of the medical journals!!!

I don't think anybody's ever had this too long without encountering some of

it. I know of one patient who died (not of suicide) and her parents have yet

to be able to deal with it because they never believed her when she was alive

and suffering. I've been thourgh the same thing with members of my own

family with my daughter, since I can fake it for a few days and they just

think I'm lazy, but not sick!!! But I couldn't stand the abuse they heaped

on her and just cut off all ties. It still hurts, but the constant tension

was relieved. Some psychologists who have written about this (believers,

that is) have said they backlash is the highest they've ever seen in an

illness. I think the name has a lot to do with it. The first time we

weren't harrassed, laughed at, or ignored when I had to bring my daughter to

an ER was when I filled out the forms and said she had ME!!! Instead, they

were embarrassed not to know what it was and I overheard a nurse being told

to look it up on the WEB!!!! Made my day!

Gail

[Guest guest]

Hi ,

It's bad enough from just people in general who ask you dumb questions. Like

you are too stupid to think this thing through. Ben there, done that! But when

your family does it really hurts. They are the ones who are supposed to know

and loves us the most. Unfortunately that isn't always true. You know that

they love you and want the best for you. My experience is that they (family)

have a hard time accepting that someone they love is going through something so

terrible and they can't help. But they could, really, by just being there and

listening. No advice, no suggestions. Just an ear to hear and a shoulder to cry

on and arms to hold you. Wish I had the nerve to tell some of my so called

'friends' that. I am fortunate that my family hasn't treated me other than

loving and supporting. Glad you feel you can share with us. We do know how

hard it is not to have the life you had before. And if we could we would all

give you gentle hugs!!

Hang in there . you are special and you are needed by us!!

Judi

Re: No friends

oobadooba wrote:

Has anyone noticed the longer you are ill,the less friends you

have? You all are my only friends now,and we have never met in person.

Pitiful. I am glad though. All of you have been what a friend should be to all

of us on this list. Thanks!!

Oh !

You really said it for me here too. I have a couple of new neighbors

that are casual friends but little by little the others have all deserted me

when I could (or would) no long *do* for them. I have felt totally abandoned at

times. I believe God allows things to happen for a reason so I don't dwell on

this thinking and if you mention it to most people, you have to listen to the

" depression diagnosis " you don't know you have blah, blah. Healthy people don't

or won't comprehend the magnitude of life changes this illness creates. I no

longer reach out to healthy people because the judgements and uninformed

" misdiagnosis " are just TOO PAINFUL. Why don't you................you know the

story.

I too am grateful for my cyberfriends, where someone understands my

pains, fears, and frustrations and we can all pool our remaining active brain

cells to correllate our experiences into a possible cure, or at least some

treatment. Having this list adds a whole new dimension to our lives, and I no

longer feel so isolated and misunderstood, which to me is as devastating as the

illness itself.

I'm glad we all have each other!

Marcia

[Guest guest]

Hi All,

Sure glad my sister is supportive. Even if she has doubts she has never

verbalized them. She is 7 years younger than I but you would think she is the

oldest. So protective of my brother and I. He is the youngest and I am the

oldest. I can praise the Lord for her warmth and understanding and love. Wish

all of you could have a sister like her.

Judi

Re: No friends

oobadooba wrote:

OF COURSE I CONSIDERED DEPRESSION AS A DX......I was a good intelligent

nurse and had some sense about me. .DUH,I want to scream everytime someone

has asked me that....Through the years,my sisters have all asked me that

question...they love me and I know they just want to help..... I was told by

several good doctors many times that I do not have primary depression symptoms.

The psychiatrist recommended that i see an infectious disease specialist.... Why

is it so hard to believe someone who was once active is now so ill?? I am so

chemically sensitive....I do not take meds due to the SE are worse than the

symptoms for me...I tried several meds before..nothing helps.. Thanks for

listening to me gripe! .

,

My sister is convinced my condition is depression. This just is so painful

to be so misunderstood I can't even talk about it. My parents went to their

graves not believing me. It would be like not believing they are dead in my

mind! They have sympathy and understanding for others, but not their own. So

sorry you have to go through it too, but so many CFSers I have talked to with a

sister have this problem. But no answers.

Marcia

[Guest guest]

My family has given me wonderful support but with a long term invisible

illness, they forget. My brother, who lives 500 miles away, sends me

emails about 'popping up for the weekend'. I used to drive up on a whim,

so that's what he's used to. I just sent him a very, very honest and

detailed email, and told him that no one misses living without limits more

than I. I also went over exactly what I can do, why, and even when I

follow all the 'rules' I can't even depend on a certain amount of ability.

In his heart, he just can't understand/accept the change in his sister, tho

it's not lack of love. He's never been sick other than a flu so he can't

grasp it. He even said that in his response, and explained that with me so

far away, it was hard not to think of me as the healthy person I was.

When someone sees a report on cfs or a treatment, they call and mention it.

My boyfriend's boss called about enada, telling him when the report was

going to be on the news, etc. I appreciate that, and it didn't include any

'suggestions', just passing on something he hoped would help.

I learned the hard way, as we all have, about just what limits 'friends'

can have and can honestly say I've figured out who the true ones are. THEY

ARE FEW, but I wouldn't trade for anything. AFter many years of being the

loyal and caretaking friend, I've been disapointed many, many more times

than not. One long time friend, I used to run her horse farm, called and

told me she would come and get me if I couldn't make the trip for

Christmas. While I didn't take her up on it, I was really touched.

On the rare occasion when I feel a need to try and explain this to someone,

I ask if they would tell someone with a broken leg to walk it off.

Invariable, the answer is no. Same deal, I tell them, you just can't see

the break.

I greatly emphasize with the loss of friendship because in the beginning,

you think that surely nothing else can be taken away. If you care about

someone, give them your honest and very open account of your health and if

they can't accept it or try to talk you out of it after giving it some

thought... Let them go. For you. I wish it was different, but cfs really

is something that tries their souls.

Christa

[Guest guest]

Hi Christa,

You said, " On the rare occasion when I feel a need to try and explain this to

someone,

I ask if they would tell someone with a broken leg to walk it off.

Invariable, the answer is no. Same deal, I tell them, you just can't see

the break.

I greatly emphasize with the loss of friendship because in the beginning,

you think that surely nothing else can be taken away. If you care about

someone, give them your honest and very open account of your health and if

they can't accept it or try to talk you out of it after giving it some

thought... Let them go. For you. I wish it was different, but cfs really

is something that tries their souls.

What good advice! I will practice it, the next time some one tells me I

need to pull myself up by boot straps and just get on with life. I wish I

could now. I have done that in the past. Now just traveling by car for 6

hours wipes me out and that is only half way to my daughter's house. In two

weeks I AM making that 12 hour trip to her house to spend a week with her.

She doesn't mind if I crash on the sofa for days. She will be at work

during the day, but we will have that time together at night. I asked my

son-in-law what he was going to do with his mother-in-law there a week to 10

days. He laughed and said that he'd just work lots of overtime. Oh

well that gives me more time with Cherie. But I know he was kidding.

Judi

Re: No friends

>From: Christa <TCraig1@...>

>

>My family has given me wonderful support but with a long term invisible

>illness, they forget. My brother, who lives 500 miles away, sends me

>emails about 'popping up for the weekend'. I used to drive up on a whim,

>so that's what he's used to. I just sent him a very, very honest and

>detailed email, and told him that no one misses living without limits more

>than I. I also went over exactly what I can do, why, and even when I

>follow all the 'rules' I can't even depend on a certain amount of ability.

>In his heart, he just can't understand/accept the change in his sister, tho

>it's not lack of love. He's never been sick other than a flu so he can't

>grasp it. He even said that in his response, and explained that with me so

>far away, it was hard not to think of me as the healthy person I was.

>

>When someone sees a report on cfs or a treatment, they call and mention it.

> My boyfriend's boss called about enada, telling him when the report was

>going to be on the news, etc. I appreciate that, and it didn't include any

>'suggestions', just passing on something he hoped would help.

>

>I learned the hard way, as we all have, about just what limits 'friends'

>can have and can honestly say I've figured out who the true ones are. THEY

>ARE FEW, but I wouldn't trade for anything. AFter many years of being the

>loyal and caretaking friend, I've been disapointed many, many more times

>than not. One long time friend, I used to run her horse farm, called and

>told me she would come and get me if I couldn't make the trip for

>Christmas. While I didn't take her up on it, I was really touched.

>

>On the rare occasion when I feel a need to try and explain this to someone,

>I ask if they would tell someone with a broken leg to walk it off.

>Invariable, the answer is no. Same deal, I tell them, you just can't see

>the break.

>

>I greatly emphasize with the loss of friendship because in the beginning,

>you think that surely nothing else can be taken away. If you care about

>someone, give them your honest and very open account of your health and if

>they can't accept it or try to talk you out of it after giving it some

>thought... Let them go. For you. I wish it was different, but cfs really

>is something that tries their souls.

>

>Christa

>

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>------------------------------------------------------------------------

>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

Since it has been a few weeks and life is chaos, I had

forgotten my mother-in-law's most recent " helpful

suggestion. " My husband (PWC) and I have gotten so

accustomed to her cluelessness, we actually laughed

about this one. She sincerely suggested that my CFIDS

beaten up husband become a day trader online. I work

as a computer security consultant for financial firms.

I laughed about that one with my co-workers for a

week. My poor husband was simply dumbfounded. My

mother-in-law is terrified of computers. We do not

have an extra couple of thousand lying around any more

than other PWCs do. I don't think my suhband ever

passed along to her my question of whether she was

going to pony up the $KK and co-sign the margin

account.

It has proved to be beyond her comprehension that her

son is seriously ill. It is a generalized idiocy --

she also refuses to treat her own asthma, doesn't

believe in my food allergies, and thinks discipline is

the best way to deal with my son's dyslexia. SHE'S NOT

THAT OLD!

What is currently galling my PDH nearly to death are

all the calls to " get healthy by exercising. " " its

never a bad time to start an exercise routine. "

Sigh.

It just never ends.

Doris

--- Judi Hoynacki <judihoynacki@...>

wrote:

> Hi ,

> It's bad enough from just people in general who ask

> you dumb questions. Like you are too stupid to

> think this thing through. Ben there, done that!

> But when your family does it really hurts. They are

> the ones who are supposed to know and loves us the

> most. Unfortunately that isn't always true. You

> know that they love you and want the best for you.

> My experience is that they (family) have a hard time

> accepting that someone they love is going through

> something so terrible and they can't help. But they

> could, really, by just being there and listening. No

> advice, no suggestions. Just an ear to hear and a

> shoulder to cry on and arms to hold you. Wish I had

> the nerve to tell some of my so called 'friends'

> that. I am fortunate that my family hasn't treated

> me other than loving and supporting. Glad you feel

> you can share with us. We do know how hard it is

> not to have the life you had before. And if we

> could we would all give you gentle hugs!!

>

> Hang in there . you are special and you are

> needed by us!!

> Judi

>

</B> Re: No

friends<BR><BR></DIV></FONT> & nbsp;

<P>oobadooba wrote:

<BLOCKQUOTE TYPE = CITE> & nbsp;<FONT

color=#000000><FONT size=-1>Has

anyone noticed the longer you are ill,the

less friends you

have? & nbsp; You all are my only friends

now,and we have never met in

person. & nbsp; Pitiful. & nbsp; & nbsp; I am

glad though. All of you have

been what a friend should be to all of us

on this list. & nbsp;

Thanks!! & nbsp; & nbsp; & nbsp;

</FONT></FONT></BLOCKQUOTE> & nbsp; Oh

!

<P>You really said it for me here too. I have

a couple of new neighbors

that are casual friends but little by little

the others have all

deserted me when I could (or would) no long

*do* for them. & nbsp; I have

felt totally abandoned at times. & nbsp; I

believe God allows things to

happen for a reason so I don't dwell on this

thinking and if you mention

it to most people, you have to listen to the

& quot;depression

diagnosis & quot; you don't know you have blah,

blah. & nbsp; Healthy people

don't or won't comprehend the magnitude of

life changes this illness

creates. & nbsp; I no longer reach out to

healthy people because the

judgements and uninformed

& quot;misdiagnosis & quot; are just TOO

PAINFUL. & nbsp; Why don't

you................you know the story.

<P>I too am grateful for my cyberfriends,

where someone understands my

pains, fears, and frustrations and we can all

pool our remaining active

brain cells to correllate our experiences into

a possible cure, or at

least some treatment. & nbsp; Having this list

adds a whole new dimension

to our lives, and I no longer feel so isolated

and misunderstood, which

to me is as devastating as the illness itself.

<P>I'm glad we all have each other!

<P>Marcia

</P></BLOCKQUOTE></BLOCKQUOTE></BODY></HTML>

_________________________________________________________

[Guest guest]

Message text written by INTERNET:onelist

>In two

weeks I AM making that 12 hour trip to her house to spend a week with her.

She doesn't mind if I crash on the sofa for days.<

Just promise you'll stop halfway at a hotel?? Pleeeeeaase?

Christa

[Guest guest]

Been there done that too! Maddening uh?

Judi

Re: No friends

>From: SWNGDABOAT@...

>

>Speaking of " friends " . I come UNGLUED when I try to explain my cognitive

>problems to " friends " and all I hear ie, " Oh yeah, THAT HAPPENS TO ME. " Or,

>explaining the profound and relentless fatigue, " Oh, I get tired too. Oh, I

>need a NAP too. " Christ.......

>

>------------------------------------------------------------------------

>Looking for an easy, effective way to research an important topic?

>

>Joining a ONElist community is your answer.

>------------------------------------------------------------------------

>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

Christa,

We have good friend that live half way in Vacaville, ca. so usually stop

there. We tease about how good their 'bed and breakfast' is. Helps me

tremendously. They don't mind if I come in and crash immediately. That's

the best kind of true friends to have, they love you no matter what.

Thanks for your concern and caring.

Judi

Re: No friends

>From: Christa <TCraig1@...>

>

>Message text written by INTERNET:onelist

>>In two

>weeks I AM making that 12 hour trip to her house to spend a week with her.

>She doesn't mind if I crash on the sofa for days.<

>

>Just promise you'll stop halfway at a hotel?? Pleeeeeaase?

>

>Christa

>

>------------------------------------------------------------------------

>Attention small business owners:

>

>Did you know that ONElist is a great way for small business owners

>to stay in touch with their customers?

>------------------------------------------------------------------------

>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

Judi

Thanks alot for saying this. With this illness at any age,you tend to feel so

useless,and you can't help but to feel hurt when your " friends all disappear and

your family talks about you behind your back as if you could get well if you

tried harder....Thanks God my husband is so wonderful. My kids are wonderful

too.. My 14 year old is always helping out and my 3 year old crawls in bed with

me and waits till I can get up in the mornings. He knows I am ill and is so

little. Sometimes he gets impatient and yells in my ear, " MOMMA<WAKE

UP<PEEEEEZZZZ>>I AM SOOOO HUNGRY!!!! I LOVE YOU<PEEEEZZZ WAKE UP!!!!

...My sister did write me back after I sent her a very factual email about all

the many differences that there are between CFIDS and primary depressions. I was

very factual and not mean about it. She said she hoped she didn't offend me.

I am not offended so much ,because I know depression is real and is often very

disabling. I am offended a bit because I feel like people must really think I am

dumb if they think I would sit around for so many years not trying to find

answers?? Of course I continue looking for answers...DUH.... Depression was the

first of many things I got treated for...my idea....,but with no success at all.

Primary depression is treatable and usually cured with treatments,though.. I do

not respond to meds for depression anyway. They made me worse, if anything. it

was aweful. Thanks for the kind words.

Re: No friends

Just awhile ago,one of my 9 sisters emailed me and asked if I had

considered depression as a cause of my problems. DUH....but I try not to act

angry or hurt anymore......The first thing I thought of when I first got too

ill to work anymore in

[Guest guest]

EXACTLY!! I hate that too!! They have no clue.

Re: No friends

>From: SWNGDABOAT@...

>

>Speaking of " friends " . I come UNGLUED when I try to explain my cognitive

>problems to " friends " and all I hear ie, " Oh yeah, THAT HAPPENS TO ME. " Or,

>explaining the profound and relentless fatigue, " Oh, I get tired too. Oh, I

>need a NAP too. " Christ.......

>

>------------------------------------------------------------------------

>Looking for an easy, effective way to research an important topic?

>

>Joining a ONElist community is your answer.

>------------------------------------------------------------------------

>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

.....Thanks God my husband is so wonderful. My kids are wonderful too.. My 14

year old is always helping out and my 3 year old crawls in bed with me and waits

till I can get up in the mornings. He knows I am ill and is so little. Sometimes

he gets impatient and yells in my ear, " MOMMA<WAKE UP<PEEEEEZZZZ>>I AM SOOOO

HUNGRY!!!! I LOVE YOU<PEEEEZZZ WAKE UP!!!!

Hi ,

when I was going through my divorce 13 years ago, my twins were 13 and the

oldest boy was 15. What got me through those really rough days were there arms

holding me and them telling me how much they loved me. Now that they are all

grown, oldest one lives in an apartment at the back of our property and the

other two are married with homes of their own, they still call or come by just

to tell me that they love me. Pretty special kids!

I sent one of the men at our church an e-mail taken from the CFIDS Association

of America. Think he will get the hint?

{{{{{{{{{{hugs}}}}}}}}

Judi