coping with isolation

[Guest guest]

Hi all,

I am writing this note to you but I am not sure when I will be able to check my

notes. So,please excuse me for late answers.

As I get worse and as time goes on I am getting more and more lonely. Less and

less support from my friends.They don't believe the illness. They either get

hurt because I am not being able to socialize,make long talks,etc and they go

away thinking that I prefer to be alone or they think that I am making the

symptoms up in my mind an make me angry. I stay away from them in that case. I

am tired of struggling to explain them my case and sometimes I think I should

get ready for complete isolation. I don't want to loose them.It could be that I

was not successful in educating them on the illness.Just wanted to check with

you if there is anything I am doing wrong.

What do you do to explain the illness to your friends? Are there any articles at

web explaining the strategies to cope with this problem?

Ken,please feel free to inform me that this subject is not relevant if you think

so. Actually I did not mean to start support type discussion. I need some info

and don't have much energy to make search at web.So,I took chance of asking the

group.

best wishes to all.

Nil

[Guest guest]

I certainly dont have the answer. I do think isolation is something most of us

have to face in varying degrees and it's a real problem. Of course one way to

stave off isolation in a limited extent is to stay engaged in this group and to

utililze the internet as fully as possible to communicate. There may also be

support groups in the area?

You do what you can with your friends - theres only so much you can do,

particularly since part of friendship is participating in doing things and you

cant do as much of that. Its one of the most difficult problems - how to stay

engaged? - with all the limitations.

Wish I could help more. Good luck, Cort

yildiz <yildiz22@...> wrote:

Hi all,

I am writing this note to you but I am not sure when I will be able to check my

notes. So,please excuse me for late answers.

As I get worse and as time goes on I am getting more and more lonely. Less and

less support from my friends.They don't believe the illness. They either get

hurt because I am not being able to socialize,make long talks,etc and they go

away thinking that I prefer to be alone or they think that I am making the

symptoms up in my mind an make me angry. I stay away from them in that case. I

am tired of struggling to explain them my case and sometimes I think I should

get ready for complete isolation. I don't want to loose them.It could be that I

was not successful in educating them on the illness.Just wanted to check with

you if there is anything I am doing wrong.

What do you do to explain the illness to your friends? Are there any articles at

web explaining the strategies to cope with this problem?

Ken,please feel free to inform me that this subject is not relevant if you think

so. Actually I did not mean to start support type discussion. I need some info

and don't have much energy to make search at web.So,I took chance of asking the

group.

best wishes to all.

Nil

[Guest guest]

Hi Nil -

I know what you mean, and doubt it's your fault. Probably most of us

have watched friends disappear (I sure have) and tried to keep

communication lines open with others...

Some people are capable of understanding somewhat; others just

aren't. Which leaves us alone more of the time. I go through times of

loneliness too - probably all of us do. May your current loneliness

pass soon.

(I've had better luck with people I've met since I got sick - they

expect less of me, never having known me healthy. Just 3 people, and

at different times they've each been a godsend.)

A couple sites I've found helpful:

http://home.flash.net/~brucepa/Key8.htm

Part of " Ten Coping Tips " , this one is about dealing with

relationships (in the context of CFS)

http://www.butyoudontlooksick.com/spoons.htm

This offers a great way to communicate with others about our

limitations. Written by someone with Lupus, it's still pretty close.

Since I'm visiting this list less often (in favor of more naps) feel

free to write to me off-list if you like.

Take care. -Lynn

[Guest guest]

Hi Nil,

No, I don't think this subject is irrelevant. I think it is something most

of us who have had these illnesses for a long time (CFS for more than 15

years for me) have faced. The problem is there is no really good answer for

it.

I have lost all but one of my 'old' (pre-illness) friends. I showed them

the videotapes (they wouldn't watch) and articles (they didn't read) and I

talked myself blue in the face trying to explain. It just didn't help.

They had maintained a friendship with the healthy, active person I used to

be and we just didn't fit together as friends any more. I have made a few

friends now with other people who have this illness, but in saying that, I

must admit that I have seen three of these new friends die, and that makes

mee is even lonelier.

There is no good answer to this, and I think all of us lose some of our hope

and some of our vitality because we are alone. In my case, I live along. I

have a daughter who lives nine miles from me, and she telephones me once or

twice a month. I have a sister who lives sixteen miles from me. I never

hear from her any more. She has 'real' health problems (cardiomyopathy) and

she says she just got 'sick as hell' of hearing about my make-believe

illness. (Of course, she never read any articles or watched any tapes

either--why should she? This illness is all in my mind, remember?

Actually, she is angry because I no longer drive her around and run her

errands like I did before I got sick myself.)

So, I sympathize with you. And the online contact helps a little. And the

'telephone' friends who also have CFS helps. But there

are times when I miss my old friends. Losing friends of 20-30 years

duration is hard.

Wishing you the best,

Original Message -----

From: " yildiz " <yildiz22@...>

< >

Sent: Thursday, September 15, 2005 7:28 PM

Subject: coping with isolation

> Hi all,

>

> I am writing this note to you but I am not sure when I will be able to

> check my notes. So,please excuse me for late answers.

>

> As I get worse and as time goes on I am getting more and more lonely. Less

> and less support from my friends.They don't believe the illness. They

> either get hurt because I am not being able to socialize,make long

> talks,etc and they go away thinking that I prefer to be alone or they

> think that I am making the symptoms up in my mind an make me angry. I stay

> away from them in that case. I am tired of struggling to explain them my

> case and sometimes I think I should get ready for complete isolation. I

> don't want to loose them.It could be that I was not successful in

> educating them on the illness.Just wanted to check with you if there is

> anything I am doing wrong.

> What do you do to explain the illness to your friends? Are there any

> articles at web explaining the strategies to cope with this problem?

>

> Ken,please feel free to inform me that this subject is not relevant if you

> think so. Actually I did not mean to start support type discussion. I need

> some info and don't have much energy to make search at web.So,I took

> chance of asking the group.

>

> best wishes to all.

> Nil

>

>

[Guest guest]

I think you are not alone in this dilema. It seems you loose some

friends that just simply don't have the empathy to understand - and

you keep the friends that (hopefully) accept you as you are.

Since this group is for experimental treatment of CFS - who knows what

other are there for more of the support / emotional

issues of CFIDS? I am a member of chronic_fatigue_syndrome here as

well - it's a small 'cozy' group. What other groups are available?

Dano

[Guest guest]

I am reminded again of how lucky I am to have an understanding family. This

brings up for me again the importance of people telling their stories. For one

it helps people understand they are not alone in the many dilemmas this illness

brings. It also give people with similar dilemmas the chance to correspond if

they wish. And of course it allows people to get their story off their chest

and into the world where it maybe can do some good.

In the last year one person has submitted their story to the CFS Phoenix

website. I hope everyone will consider doing so.

http://phoenix-cfs.org/The%20SITE/TellYourStoryBegin.htm

<retractap@...> wrote:

Hi Nil,

No, I don't think this subject is irrelevant. I think it is something most

of us who have had these illnesses for a long time (CFS for more than 15

years for me) have faced. The problem is there is no really good answer for

it.

I have lost all but one of my 'old' (pre-illness) friends. I showed them

the videotapes (they wouldn't watch) and articles (they didn't read) and I

talked myself blue in the face trying to explain. It just didn't help.

They had maintained a friendship with the healthy, active person I used to

be and we just didn't fit together as friends any more. I have made a few

friends now with other people who have this illness, but in saying that, I

must admit that I have seen three of these new friends die, and that makes

mee is even lonelier.

There is no good answer to this, and I think all of us lose some of our hope

and some of our vitality because we are alone. In my case, I live along. I

have a daughter who lives nine miles from me, and she telephones me once or

twice a month. I have a sister who lives sixteen miles from me. I never

hear from her any more. She has 'real' health problems (cardiomyopathy) and

she says she just got 'sick as hell' of hearing about my make-believe

illness. (Of course, she never read any articles or watched any tapes

either--why should she? This illness is all in my mind, remember?

Actually, she is angry because I no longer drive her around and run her

errands like I did before I got sick myself.)

So, I sympathize with you. And the online contact helps a little. And the

'telephone' friends who also have CFS helps. But there

are times when I miss my old friends. Losing friends of 20-30 years

duration is hard.

Wishing you the best,

Original Message -----

From: " yildiz " <yildiz22@...>

< >

Sent: Thursday, September 15, 2005 7:28 PM

Subject: coping with isolation

> Hi all,

>

> I am writing this note to you but I am not sure when I will be able to

> check my notes. So,please excuse me for late answers.

>

> As I get worse and as time goes on I am getting more and more lonely. Less

> and less support from my friends.They don't believe the illness. They

> either get hurt because I am not being able to socialize,make long

> talks,etc and they go away thinking that I prefer to be alone or they

> think that I am making the symptoms up in my mind an make me angry. I stay

> away from them in that case. I am tired of struggling to explain them my

> case and sometimes I think I should get ready for complete isolation. I

> don't want to loose them.It could be that I was not successful in

> educating them on the illness.Just wanted to check with you if there is

> anything I am doing wrong.

> What do you do to explain the illness to your friends? Are there any

> articles at web explaining the strategies to cope with this problem?

>

> Ken,please feel free to inform me that this subject is not relevant if you

> think so. Actually I did not mean to start support type discussion. I need

> some info and don't have much energy to make search at web.So,I took

> chance of asking the group.

>

> best wishes to all.

> Nil

>

>

[Guest guest]

I

have a daughter who lives nine miles from me, and she telephones me once or

twice a month. I have a sister who lives sixteen miles from me. I never

hear from her any more. She has 'real' health problems (cardiomyopathy) and

she says she just got 'sick as hell' of hearing about my make-believe

illness. (Of course, she never read any articles or watched any tapes

either--why should she? This illness is all in my mind, remember?

Actually, she is angry because I no longer drive her around and run her

errands like I did before I got sick myself.)

,

I'm in the same boat, 3 siblings and all think I'm an idiot and just lazy/crazy

and a whiner. None of them have anything to do with me anymore and all are quite

hateful about it acutally. It just seems unbeleivable to me that when you need

family the most, you get the least. And yes, I was the one that watched over our

parents more than any of the others, despite my illness, even tho, the parents

didn't listen or beleive how sick I was either. There certainly is no justice

in the humiliation and isolation of this illness. Yes, friends all faded away

very quickly as well. I have joined 'interest' clubs, my interest is horses and

I've joined horse clubs to meet people and can interact as much as I can and

skip what I can't, that way I can be around people, keep life 1/2 way 'normal'

or the illusion of it anyway and when I need to crash and be alone I can do

that. No one there understands my health probs and I don't share much of any of

it with any of them, thats not what they came there for and I dont' want the

illness to define my whole life. But at least I feel in contact with the world.

Some pwc's can't get out, too sick, so that option is not available for them

sadly.

I guess we are each others family now, the only family we got!

Marcia

[Guest guest]

Hi

I could really relate strongly to what's been written. I'm luckier

than most b/c I can live with with my parents who both fully

understand. I got ill at 15, but only severely at 17, I'm now 29.

The only advantage of getting ill at that age is that my parents saw

me change almost overnight from a virus, as a child and understand.

( I had sudden onset after Mono.) Other than my parents I don't

really have anyone. I have a brother and he understands I'm ill, but

he's married with 2 kids and, understandably immersed in all that

entails.

What really got to me here was that someone else has that feeling

of " Did I explain right? Maybe I didn't explain right? "

" Why didn't I say x when explaining the illness?. "

I always feel inferior like other ill people can explain better than

me so have more friends and do better.

I also went throo a period - and I think this is related - when I

felt inferior to those PWCFIDS who were able to live a lone, and

were independant like I'm lazy with my disabilities or don't try

hard enough. This I now know to be rubbish but I still have the

problem of feeling I don't explain well enough and feeling bad for

that.

Nothing on the net helped in particular for me which makes it worse

especially that I live in Israel and don't have brilliant Hebrew.

But that doesn't mean it won't help others. I've had help with

videos about this illness.

I've got used to being alone more. I still have my parents although

I don't have any peer friends really. There are positive things to

isolation. Maybe this is a silly comment to finish with but I read

somewhere that Geniuses like Albert Einstein went throo periods of

isolation before they came up with their theories!

Chaiya

> Hi Nil,

>

> No, I don't think this subject is irrelevant. I think it is

something most

> of us who have had these illnesses for a long time (CFS for more

than 15

> years for me) have faced. The problem is there is no really good

answer for

> it.

>

> I have lost all but one of my 'old' (pre-illness) friends. I

showed them

> the videotapes (they wouldn't watch) and articles (they didn't

read) and I

> talked myself blue in the face trying to explain. It just didn't

help.

> They had maintained a friendship with the healthy, active person I

used to

> be and we just didn't fit together as friends any more. I have

made a few

> friends now with other people who have this illness, but in saying

that, I

> must admit that I have seen three of these new friends die, and

that makes

> mee is even lonelier.

>

> There is no good answer to this, and I think all of us lose some

of our hope

> and some of our vitality because we are alone. In my case, I live

along. I

> have a daughter who lives nine miles from me, and she telephones

me once or

> twice a month. I have a sister who lives sixteen miles from me.

I never

> hear from her any more. She has 'real' health problems

(cardiomyopathy) and

> she says she just got 'sick as hell' of hearing about my make-

believe

> illness. (Of course, she never read any articles or watched any

tapes

> either--why should she? This illness is all in my mind, remember?

> Actually, she is angry because I no longer drive her around and

run her

> errands like I did before I got sick myself.)

>

> So, I sympathize with you. And the online contact helps a

little. And the

> 'telephone' friends who also have CFS helps. But there

> are times when I miss my old friends. Losing friends of 20-30

years

> duration is hard.

>

> Wishing you the best,

>

>

>

> Original Message -----

> From: " yildiz " <yildiz22@g...>

> < >

> Sent: Thursday, September 15, 2005 7:28 PM

> Subject: coping with isolation

>

>

> > Hi all,

> >

> > I am writing this note to you but I am not sure when I will be

able to

> > check my notes. So,please excuse me for late answers.

> >

> > As I get worse and as time goes on I am getting more and more

lonely. Less

> > and less support from my friends.They don't believe the illness.

They

> > either get hurt because I am not being able to socialize,make

long

> > talks,etc and they go away thinking that I prefer to be alone or

they

> > think that I am making the symptoms up in my mind an make me

angry. I stay

> > away from them in that case. I am tired of struggling to explain

them my

> > case and sometimes I think I should get ready for complete

isolation. I

> > don't want to loose them.It could be that I was not successful

in

> > educating them on the illness.Just wanted to check with you if

there is

> > anything I am doing wrong.

> > What do you do to explain the illness to your friends? Are there

any

> > articles at web explaining the strategies to cope with this

problem?

> >

> > Ken,please feel free to inform me that this subject is not

relevant if you

> > think so. Actually I did not mean to start support type

discussion. I need

> > some info and don't have much energy to make search at web.So,I

took

> > chance of asking the group.

> >

> > best wishes to all.

> > Nil

> >

> >

[Guest guest]

Hi Cort,

I will do my story soon, since I got that mercury filling out of my jaw, its

really changed my brain and my brains feels much better, my fatigue is still

there but I feel like I found a cause for some of the years of agony and even

tho I have such a long expensive road ahead of me taking care of all the dental

'mistakes' done to me, I feel I at least have a 'direction'. That might be

helpful to others when I can find time to write it down. Keep reminding us, its

very hard for cfs patients to think clearly to remember and to write and its

painful to think about the lost years, but I do see your point in helping others

to cope with what they are coming into.

Marcia

coping with isolation

> Hi all,

>

> I am writing this note to you but I am not sure when I will be able to

> check my notes. So,please excuse me for late answers.

>

> As I get worse and as time goes on I am getting more and more lonely. Less

> and less support from my friends.They don't believe the illness. They

> either get hurt because I am not being able to socialize,make long

> talks,etc and they go away thinking that I prefer to be alone or they

> think that I am making the symptoms up in my mind an make me angry. I stay

> away from them in that case. I am tired of struggling to explain them my

> case and sometimes I think I should get ready for complete isolation. I

> don't want to loose them.It could be that I was not successful in

> educating them on the illness.Just wanted to check with you if there is

> anything I am doing wrong.

> What do you do to explain the illness to your friends? Are there any

> articles at web explaining the strategies to cope with this problem?

>

> Ken,please feel free to inform me that this subject is not relevant if you

> think so. Actually I did not mean to start support type discussion. I need

> some info and don't have much energy to make search at web.So,I took

> chance of asking the group.

>

> best wishes to all.

> Nil

>

>

[Guest guest]

Hi Nil,

" The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic

Fatigue Syndrome " edited by Byron Hyde " , emphasizes the importance of

" Social and Economic Support " and " Family, Medical, and Government

Support " to recovery from this illness. (Chapter 4, " Some Factors

Affecting Rehabilitation " ) Singer Janis Ian's story of her " remission "

is also a good example of the importance of social support.

So it seems to me your note is definitely relevant to this list.

I wish I had some good solutions to the problem of isolation. I can only

tell you what I have done, which has helped some, but has not solved the

problem by any means.

Educating family is a very long term project. For starters, most people

don't like to read, and they sure don't want to read about CFS. What's

worse, of course, is that there are no really good news media articles on

CFS. And it is such a complex illness. It is better to convert

scientific articles or research extracts into layman's terms and shorten

them before you give them to family members. Not too often either,

depending on the person. If you talk about it, try to be brief.

Humor helps, too. People are uncomfortable talking about serious,

chronic illness. I guess it brings up a lot of feelings of fear and

helplessness. They don't know what to say or do. So it helps if you can

keep things light. When I could not remember how to spell the word toy,

or forgot where my frequently visited coffee shop was, or put the ice

cream in the oven, or dropped a gallon of paint on the floor, etc., I

felt like crying. But when I told my family about it, I laughed about it

or smiled about it.

For the most part, I find it impossible to have friendships with people

who do not suffer (or have not suffered) from serious, chronic illnesses.

Almost all of my friends have CFS or Lyme disease or MS. Over the

years, I have made friendships by starting a conversation with the people

sitting next to me at the doctors office. If I find someone I like, I

ask them if I can call them sometimes. I made two friends when I was

getting IV antibiotics, because about a dozen of us sat in a room

together while we were getting our IV's. I have made some friends by

attending support group meetings. I also have internet friends who I

have never met. Sometimes, someone who reads my story on a guest list on

a website, contacts me by email.

But it is exhausting to write emails and talk on the phone. I let people

know up front that I never know how long I'll be able to talk on the

phone or how often I will be able to write an email because my energy is

limited. Sometimes, I'm just too sick to return a phone call for a

couple of weeks. If I have to turn down an invitation, I tell them to be

sure to call me next time. I lose friends and then have to make new

ones. It is devastating to lose a friend when you are so disabled, but I

just tell myself it wasn't my fault or their fault. It was time for that

friendship to end.

Talking on the phone or writing emails does not take the place of

personal contact, however. That is what I miss the most. I am not well

enough to leave my house most of the time, and I don't have the energy to

invite people over either.

I have dark, dark days when the feelings of isolation get really bad. My

husband doesn't get home from work until 7:30, and he's tired and doesn't

feel like talking, and sick too. Just not as sick as I am.

I think most of us have trouble coping with isolation. You are not

alone.

Vickie

On Fri, 16 Sep 2005 02:28:41 +0300 " yildiz " <yildiz22@...> writes:

Hi all,

I am writing this note to you but I am not sure when I will be able to

check my notes. So,please excuse me for late answers.

As I get worse and as time goes on I am getting more and more lonely.

Less and less support from my friends.They don't believe the illness.

They either get hurt because I am not being able to socialize,make long

talks,etc and they go away thinking that I prefer to be alone or they

think that I am making the symptoms up in my mind an make me angry. I

stay away from them in that case. I am tired of struggling to explain

them my case and sometimes I think I should get ready for complete

isolation. I don't want to loose them.It could be that I was not

successful in educating them on the illness.Just wanted to check with you

if there is anything I am doing wrong.

What do you do to explain the illness to your friends? Are there any

articles at web explaining the strategies to cope with this problem?

Ken,please feel free to inform me that this subject is not relevant if

you think so. Actually I did not mean to start support type discussion. I

need some info and don't have much energy to make search at web.So,I took

chance of asking the group.

best wishes to all.

Nil

[Guest guest]

I am so blessed. I live and work at a Christian Boarding Academy, and everyone

here is quite understanding that I can't work as hard or as much. I get special

work privileges~at the school cafe I don't have to sweep, vacuum, or clean the

tables, I just do food prep and cooking. It is still tiring but not as hard on

my muscles as the other parts of the job. There are several people on campus

who have different ailments (diabetes, mitral valve prolapse, depression,

systemic candida, me with CFS/FMS) and there are several health-field

professionals who understand the nature of the illness. My family is quite

supportive, although my sister does try to tell me it's our age group and we're

not getting younger (yet my mother can outwork me any day at age 75). I find

when I do show too much energy that people are less likely to think I'm ill...go

figure that on good days you get a lot done and they think you are not as sick

as you say.

We know a young lady who is studying nursing at s University in land

and the first thing they taught them was that you can't measure pain, so if a

patient says they are in pain you have to believe them~I hope they are teaching

the new docs this too. Yay, someone finally understands!

On the other hand, when I tell people I have CFS/FMS I have had them tell me I

look so healthy. So, yeah, people expect us to look " sick " , which we definitely

are, but they can't measure fatigue when we can walk and talk and look " normal. "

My CFS has probably been with me since a child (we hunted & wandered the

mountains~could have gotten lyme way back when...), I have had several crash

episodes (one I know was viral as I was really sick and later tested positive

for EBV); many from doing too much and over-extending my body's limitations. I

now know to pace myself and explain to everyone it's like having the flu, you're

up a few hours then you rest a few hours.

Here's prayers sent your way for peace and understanding, and the energy to

withstand and get at least one thing done a day~even if it is just to rest

because you deserve it.

in La Selva Beach CA, 52 years young with CFS/FMS since childhood

Re: coping with isolation

I

have a daughter who lives nine miles from me, and she telephones me once or

twice a month. I have a sister who lives sixteen miles from me. I never

hear from her any more. She has 'real' health problems (cardiomyopathy) and

she says she just got 'sick as hell' of hearing about my make-believe

illness. (Of course, she never read any articles or watched any tapes

either--why should she? This illness is all in my mind, remember?

Actually, she is angry because I no longer drive her around and run her

errands like I did before I got sick myself.)

,

I'm in the same boat, 3 siblings and all think I'm an idiot and just

lazy/crazy and a whiner. None of them have anything to do with me anymore and

all are quite hateful about it acutally. It just seems unbeleivable to me that

when you need family the most, you get the least. And yes, I was the one that

watched over our parents more than any of the others, despite my illness, even

tho, the parents didn't listen or beleive how sick I was either. There

certainly is no justice in the humiliation and isolation of this illness. Yes,

friends all faded away very quickly as well. I have joined 'interest' clubs, my

interest is horses and I've joined horse clubs to meet people and can interact

as much as I can and skip what I can't, that way I can be around people, keep

life 1/2 way 'normal' or the illusion of it anyway and when I need to crash and

be alone I can do that. No one there understands my health probs and I don't

share much of any of it with any of them, thats not what they cam

I guess we are each others family now, the only family we got!

Marcia

[Guest guest]

Hi ,

Like you I became ill at a young age - first symptoms at 10. I met my

husband when I was 15 so he has never known me properly well but has

seen me in remission and relapse. The one thing I would say is don't be

at all fretful about the need of others and an inability to live alone.

I am now very very nearly 45 and have never properly lived alone. It's

pretty annoying to be so dependent, especially when, by nature, I'm very

autonomous and independent. I know that if I were well I would be

capable of all sorts, but I'm not and I have to live within the

constraints of this illness.

If/ when things improve - perhaps with the help of new understandings

through recent research - you will be able to do things even if at

present you can't imagine that happening. The process of gaining better

health allows those things to just naturally slip back into our lives,

It won't be a question of fighting hard to be more 'normal' - for want

of a better word - it will be a side effect of health. I know this

because I have been through remissions before - though not, sadly, for

quite a while. The impossible becomes possible, because your health is

the key to it. Don't beat yourself up about the limitations of the

illness - it isn't your fault.

Rosie

I also went throo a period - and I think this is related - when I

felt inferior to those PWCFIDS who were able to live a lone, and

were independant like I'm lazy with my disabilities or don't try

hard enough. This I now know to be rubbish but I still have the

problem of feeling I don't explain well enough and feeling bad for

that.

Nothing on the net helped in particular for me which makes it worse

especially that I live in Israel and don't have brilliant Hebrew.

But that doesn't mean it won't help others. I've had help with

videos about this illness.

I've got used to being alone more. I still have my parents although

I don't have any peer friends really. There are positive things to

isolation. Maybe this is a silly comment to finish with but I read

somewhere that Geniuses like Albert Einstein went throo periods of

isolation before they came up with their theories!

Chaiya

> Hi Nil,

>

> No, I don't think this subject is irrelevant. I think it is

something most

> of us who have had these illnesses for a long time (CFS for more

than 15

> years for me) have faced. The problem is there is no really good

answer for

> it.

>

> I have lost all but one of my 'old' (pre-illness) friends. I

showed them

> the videotapes (they wouldn't watch) and articles (they didn't

read) and I

> talked myself blue in the face trying to explain. It just didn't

help.

> They had maintained a friendship with the healthy, active person I

used to

> be and we just didn't fit together as friends any more. I have

made a few

> friends now with other people who have this illness, but in saying

that, I

> must admit that I have seen three of these new friends die, and

that makes

> mee is even lonelier.

>

> There is no good answer to this, and I think all of us lose some

of our hope

> and some of our vitality because we are alone. In my case, I live

along. I

> have a daughter who lives nine miles from me, and she telephones

me once or

> twice a month. I have a sister who lives sixteen miles from me.

I never

> hear from her any more. She has 'real' health problems

(cardiomyopathy) and

> she says she just got 'sick as hell' of hearing about my make-

believe

> illness. (Of course, she never read any articles or watched any

tapes

> either--why should she? This illness is all in my mind, remember?

> Actually, she is angry because I no longer drive her around and

run her

> errands like I did before I got sick myself.)

>

> So, I sympathize with you. And the online contact helps a

little. And the

> 'telephone' friends who also have CFS helps. But there

> are times when I miss my old friends. Losing friends of 20-30

years

> duration is hard.

>

> Wishing you the best,

>

>

>

> Original Message -----

> From: " yildiz " <yildiz22@g...>

> < >

> Sent: Thursday, September 15, 2005 7:28 PM

> Subject: coping with isolation

>

>

> > Hi all,

> >

> > I am writing this note to you but I am not sure when I will be

able to

> > check my notes. So,please excuse me for late answers.

> >

> > As I get worse and as time goes on I am getting more and more

lonely. Less

> > and less support from my friends.They don't believe the illness.

They

> > either get hurt because I am not being able to socialize,make

long

> > talks,etc and they go away thinking that I prefer to be alone or

they

> > think that I am making the symptoms up in my mind an make me

angry. I stay

> > away from them in that case. I am tired of struggling to explain

them my

> > case and sometimes I think I should get ready for complete

isolation. I

> > don't want to loose them.It could be that I was not successful

in

> > educating them on the illness.Just wanted to check with you if

there is

> > anything I am doing wrong.

> > What do you do to explain the illness to your friends? Are there

any

> > articles at web explaining the strategies to cope with this

problem?

> >

> > Ken,please feel free to inform me that this subject is not

relevant if you

> > think so. Actually I did not mean to start support type

discussion. I need

> > some info and don't have much energy to make search at web.So,I

took

> > chance of asking the group.

> >

> > best wishes to all.

> > Nil

> >

> >

[Guest guest]

It takes telling them again and again, reminding them again and again.

80% of former friends will be gone in a whiff, refusing to acknowledge

the pain, not wanting to be thrown off orbit, not being able to do

former activities with you anymore; the new ones or the ones who stay--

the ones who stay are terrific, they actually LISTEN and understand,

but they're rare--new ones...I sometimes say to someone I'm working

closely with, " So, let me ask you a straightforward question. Do you

think I'm somaticizing or that the greater part of this is emotional? "

I'll confront the unspoken thoughts I sense, and then they have to

say, no, and back off, and I'll explain explicitly what I " m going

thru, though its a bit like nonstick teflon, they listen and get it

for a minute, and then later forget it, just don't even remember what

they were told. Or write a letter, I believe many times they don't

read it. That's okay. I think you have to maintain your own integrity

and stay true to yourself and always strive to do the most you can

with whatever is going on. I've also made some new friends who are

sort of like me, strong, courageous, but dealing with similar health

issues. Problem is, most of them can't socialize very often--or some

live halfway across the country!

[Guest guest]

Hi ,

I agree with Rosie. I think you need to be more gentle with yourself. I

would not live alone if I had a choice about it. Just be thankful when you

have family and friends who are there to support you. They are so

important, and so much help to you.

Believe me, if you have one of these illnesses (CFS, Lyme, Lupus, etc.) and

are living with it, you don't need to do anything to prove you are strong.

If you have one of these diseases and you are alive, you are strong! You

are a survivor, and you really need to be as gentle with yourself as you

can.

None of us are doing everything right. All of us make mistakes. All any of

us are doing here is just doing the best we can.

Take care of yourself, and check in with us and let us know how you are

doing once in a while.

Wishing you the best,

Re: coping with isolation

(message snipped)

> What really got to me here was that someone else has that feeling

> of " Did I explain right? Maybe I didn't explain right? "

> " Why didn't I say x when explaining the illness?. "

> I always feel inferior like other ill people can explain better than

> me so have more friends and do better.

>

> I also went throo a period - and I think this is related - when I

> felt inferior to those PWCFIDS who were able to live a lone, and

> were independant like I'm lazy with my disabilities or don't try

> hard enough. This I now know to be rubbish but I still have the

> problem of feeling I don't explain well enough and feeling bad for

> that.

(message snipped)

>

>

> Chaiya

[Guest guest]

Yes, IMO you should mentally prepare yourself for complete

isolation unless you are able to get at least a menial part time

job. Reading some of the grea works like Conan (Sherlock Holmes)

and/or Steinbeck, etc. are things to look forward to. When

people have to go to nursing homes, even family stops coming to see

them eventually. I am married w/ one child and the isolation is

real bad other than at work which won't last much longer. In regards

to being off topic, usually Ken lets threads like this go on for a

while unless it gets to be too much. Isolation isn't all that bad

as long as you are prepared.

Mike C

-- In , " yildiz " <yildiz22@g...>

wrote:

> Hi all,

I think I should get ready for complete isolation. I don't want to

loose them.

[Guest guest]

This has happened to me. I am recently giving in to the

antideprsssants i am just so depressed. i have no friends in my

area, no job or vehicle anymore, nothing. i live with my parents who

are not supportive mentally.

So I sit in my room all day or in bed and research CFS/FM and

related. I know a lot now about medicine and stuff because of years

of reading about this stuff.

Without the net, i do not know what i would do. I would be all alone.

> > Hi all,

> I think I should get ready for complete isolation. I don't want

to

> loose them.

[Guest guest]

I found that Taurine and Thiamine give me a good mood

boost. Feel much more able to cope, and even optimistic!!

I take recup. That helps my anxiety too.

> > > Hi all,

> > I think I should get ready for complete isolation. I don't want

> to

> > loose them.

[Guest guest]

Whenever you feel ready - that would be great. I always appreciate the depth of

your sharing with the group - particularly given the tough time you've had.

Marcia <mgrahn@...> wrote:Hi Cort,

I will do my story soon, since I got that mercury filling out of my jaw, its

really changed my brain and my brains feels much better, my fatigue is still

there but I feel like I found a cause for some of the years of agony and even

tho I have such a long expensive road ahead of me taking care of all the dental

'mistakes' done to me, I feel I at least have a 'direction'. That might be

helpful to others when I can find time to write it down. Keep reminding us, its

very hard for cfs patients to think clearly to remember and to write and its

painful to think about the lost years, but I do see your point in helping others

to cope with what they are coming into.

Marcia

coping with isolation

> Hi all,

>

> I am writing this note to you but I am not sure when I will be able to

> check my notes. So,please excuse me for late answers.

>

> As I get worse and as time goes on I am getting more and more lonely. Less

> and less support from my friends.They don't believe the illness. They

> either get hurt because I am not being able to socialize,make long

> talks,etc and they go away thinking that I prefer to be alone or they

> think that I am making the symptoms up in my mind an make me angry. I stay

> away from them in that case. I am tired of struggling to explain them my

> case and sometimes I think I should get ready for complete isolation. I

> don't want to loose them.It could be that I was not successful in

> educating them on the illness.Just wanted to check with you if there is

> anything I am doing wrong.

> What do you do to explain the illness to your friends? Are there any

> articles at web explaining the strategies to cope with this problem?

>

> Ken,please feel free to inform me that this subject is not relevant if you

> think so. Actually I did not mean to start support type discussion. I need

> some info and don't have much energy to make search at web.So,I took

> chance of asking the group.

>

> best wishes to all.

> Nil

>

>

[Guest guest]

Thank you all.

I need some time to absorb and process the info you have given.This was

great help of you.This seems to be a great problem for chronic illnesses as

some of you pointed.I once got worse and found no one around to help. This

was about two years ago.I needed some support and no one was supporting.That

was the time when I needed most help. At that time I prepared my self for

death. That was the bottom point and went through a small personal

transformation at that point. Stopped expecting help from others and get

ready for everything that might happen including death.At that point,I, by

chance,started getting little well and after getting better some of my

friends returned as I started being able to talk again.I must admit that I

developed some hate at that time.Nowadays I am going through similar

process. I think this time call for me is that I need to develop acceptance

without hate. Don't know if I will be able to do it.

Best wishes and good luck to you all.

Nil

Re: coping with isolation

>I found that Taurine and Thiamine give me a good mood

> boost. Feel much more able to cope, and even optimistic!!

>

> I take recup. That helps my anxiety too.

>

>

>

[Guest guest]

Perhaps I'm lucky but whereas I don't see all the people I might if I

were well, I haven't had disbelief from anyone - other than my first GP.

In fact I made a lot of new friends when we moved to our present

neighbourhood, and being pregnant at the time I was very well. That

probably helped, as now being so unwell, tey know the 'real' me and

equally know that I wouldn't be pretending to feel like this. All my

neighbours just think it's really bad luck, not that I'm in any way

culpable for my illness.

Rosie

It takes telling them again and again, reminding them again and again.

80% of former friends will be gone in a whiff, refusing to acknowledge

the pain, not wanting to be thrown off orbit, not being able to do

former activities with you anymore; the new ones or the ones who stay--

the ones who stay are terrific, they actually LISTEN and understand,

but they're rare--new ones...I sometimes say to someone I'm working

closely with, " So, let me ask you a straightforward question. Do you

think I'm somaticizing or that the greater part of this is emotional? "

I'll confront the unspoken thoughts I sense, and then they have to

say, no, and back off, and I'll explain explicitly what I " m going

thru, though its a bit like nonstick teflon, they listen and get it

for a minute, and then later forget it, just don't even remember what

they were told. Or write a letter, I believe many times they don't

read it. That's okay. I think you have to maintain your own integrity

and stay true to yourself and always strive to do the most you can

with whatever is going on. I've also made some new friends who are

sort of like me, strong, courageous, but dealing with similar health

issues. Problem is, most of them can't socialize very often--or some

live halfway across the country!

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]

> Thank you all.

> I need some time to absorb and process the info you have

given.This was

> great help of you.This seems to be a great problem for chronic

illnesses as

> some of you pointed.I once got worse and found no one around to

help. This

> was about two years ago.I needed some support and no one was

supporting.That

> was the time when I needed most help. At that time I prepared my

self for

> death. That was the bottom point and went through a small personal

> transformation at that point. Stopped expecting help from others

and get

> ready for everything that might happen including death.At that

point,I, by

> chance,started getting little well and after getting better some

of my

> friends returned as I started being able to talk again.I must

admit that I

> developed some hate at that time.Nowadays I am going through

similar

> process. I think this time call for me is that I need to develop

acceptance

> without hate. Don't know if I will be able to do it.

>

> Best wishes and good luck to you all.

> Nil

It has not been much of a problem to me...so called friends

have come and gone and sometimes come again...my 'mate' my husband

is a huge part of my world and mostly been the only friend I have

ever needed although he is a real social being so does need

different company at times...we all have different needs. When it

comes down to feeling what is normal though, I do some days feel a

resentment to towards others and for some reason those feelings

often occur when I watch television which is odd. I think the hate

feelings may have progressed from resentment and frustation and a

reflection of how bad you can feel without being able to anything

about it. Dianne

>

> Re: coping with isolation

>

>

> >I found that Taurine and Thiamine give me a good mood

> > boost. Feel much more able to cope, and even optimistic!!

> >

> > I take recup. That helps my anxiety too.

> >

> >

> >

[Guest guest]

Rosie,

You have, indeed, been VERY LUCKY ! ! ! Start thanking God or your lucky

stars right now. This is not a very common experience.

I had great friends in my old neighborhood--lived for many years in a big

house with a big rose garden and very caring neighbors. But I could no

longer take care of the house or the rose garden, and whoever I hired to do

it never actually did the job at all. After a dozen years of caring for

that house and garden, it was painful to see it go downhill.

After I was badly injured in a car crash, I sold the big house in the old

neighborhood and moved to a new one. I was very sick when I moved here and

I have not been healthy since I moved here. Unfortunately, I have gotten

sicker and sicker. I have two neighbors who are kind to me. The others are

absolutely dreadful. I am too ill now to even leave the house (except when

someone else takes me to medical appointments). Neighbors leave nasty notes

on my door saying I need to weed my yard or paint my house or whatever their

own opinions are. Funny thing, though, they don't sign them. So I ignore

them.

The two neighbors who speak to me tell me the others make up wild rumors

about me. This is a country club neighborhood (zero lot line, yard supposed

to be taken care of by Homeowners' Assn), and they make up stories about how

I got the money to buy my house. So far none have even suspected the truth:

I was a lawyer, I made good money and I worked very hard for many, many

years. The house I sold before I moved here was in a very posh area and I

came out of the sale with a nice chunk of cash. (Oh yeah, the neighbors

here gossip about how I managed to pay so much down on my house and keep

such a small mortgage--mortgage for tax purposes.) Don't these people have

anything to do with their time? I know some of them don't. They are

healthy and retired and they seem to get their entertainment from making

trouble for other people.

Last year my neighborhood suffered through three major hurricanes, with

major damage and loss of power and water. I was alone in my house with no

electricity and no water for a week. Not a single one of my neighbors

knocked on my door to see if I was alive or dead or might need a glass of

water.

So if you have people who care for you, and family who love you, you are,

indeed, the LUCKIEST among us. It is at least half the battle to have help,

in my opinion.

RE: Re: coping with isolation

> Perhaps I'm lucky but whereas I don't see all the people I might if I

> were well, I haven't had disbelief from anyone - other than my first GP.

> In fact I made a lot of new friends when we moved to our present

> neighbourhood, and being pregnant at the time I was very well. That

> probably helped, as now being so unwell, tey know the 'real' me and

> equally know that I wouldn't be pretending to feel like this. All my

> neighbours just think it's really bad luck, not that I'm in any way

> culpable for my illness.

>

> Rosie

>

>

>

>

> It takes telling them again and again, reminding them again and again.

> 80% of former friends will be gone in a whiff, refusing to acknowledge

> the pain, not wanting to be thrown off orbit, not being able to do

> former activities with you anymore; the new ones or the ones who stay--

> the ones who stay are terrific, they actually LISTEN and understand,

> but they're rare--new ones...I sometimes say to someone I'm working

> closely with, " So, let me ask you a straightforward question. Do you

> think I'm somaticizing or that the greater part of this is emotional? "

> I'll confront the unspoken thoughts I sense, and then they have to

> say, no, and back off, and I'll explain explicitly what I " m going

> thru, though its a bit like nonstick teflon, they listen and get it

> for a minute, and then later forget it, just don't even remember what

> they were told. Or write a letter, I believe many times they don't

> read it. That's okay. I think you have to maintain your own integrity

> and stay true to yourself and always strive to do the most you can

> with whatever is going on. I've also made some new friends who are

> sort of like me, strong, courageous, but dealing with similar health

> issues. Problem is, most of them can't socialize very often--or some

> live halfway across the country!

>

>

>

>

>

>

> 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]

I am convinced that the most valuable asset to maintaining quality

of life with this is treatment of the mental and emotional challenges

of this illness. (so I hope this thread is allowed as a relavent

thread to discuss)

You mention anger and that really sounded familiar. I have seen

intimately how people with chronic illness can use counterproductive

emotional reactions and how it really really backfires. I used them

myself for a while. You get angry or feel manipulative at healthy

friends who don't understand- and if you don't diffuse it in a healthy

way, you end up alienating yourself from those who may have a little

help to offer even if it is less than you had hoped for. I feel angry

when I see advertisements for pharmaceuticals showing people being

happy now that they are taking the right drug, or angry at the massive

response to helping the Katrina victims while no great mobilization is

made to help our plight. I have to transform it into being happy for

them, that at least their suffering is being helped. Know you are not

alone in this good fight.

Regards,

Dano

> Thank you all.

> I need some time to absorb and process the info you have given.This was

> great help of you.This seems to be a great problem for chronic

illnesses as

> some of you pointed.I once got worse and found no one around to

help. This

> was about two years ago.I needed some support and no one was

supporting.That

> was the time when I needed most help. At that time I prepared my

self for

> death. That was the bottom point and went through a small personal

> transformation at that point. Stopped expecting help from others and get

> ready for everything that might happen including death.At that

point,I, by

> chance,started getting little well and after getting better some of my

> friends returned as I started being able to talk again.I must admit

that I

> developed some hate at that time.Nowadays I am going through similar

> process. I think this time call for me is that I need to develop

acceptance

> without hate. Don't know if I will be able to do it.

>

> Best wishes and good luck to you all.

> Nil

>

> Re: coping with isolation

>

>

> >I found that Taurine and Thiamine give me a good mood

> > boost. Feel much more able to cope, and even optimistic!!

> >

> > I take recup. That helps my anxiety too.

> >

> >

> >

[Guest guest]

Hi ,

I'm very sorry to hear about all that is going on with you. Being ill

is bad enough but having to cope with that is both unfair, and no doubt

adds to the stress levels.

I suppose the only way to cope with it is (as you do) ignore it and

realise that these are pretty ignorant/small minded people.

I don't know your age, but it would be great if one of these days you

could be well enough to get back to the work of which you sound so

capable - it would be one in the eye for the doubtors, not to mantion

the enjoyment that simply being well brings.

Rosie

After I was badly injured in a car crash, I sold the big house in the

old

neighborhood and moved to a new one. I was very sick when I moved here

and

I have not been healthy since I moved here. Unfortunately, I have

gotten

sicker and sicker. I have two neighbors who are kind to me. The others

are

absolutely dreadful. I am too ill now to even leave the house (except

when

someone else takes me to medical appointments). Neighbors leave nasty

notes

on my door saying I need to weed my yard or paint my house or whatever

their

own opinions are. Funny thing, though, they don't sign them. So I

ignore

them.

The two neighbors who speak to me tell me the others make up wild rumors

about me. This is a country club neighborhood (zero lot line, yard

supposed

to be taken care of by Homeowners' Assn), and they make up stories about

how

I got the money to buy my house. So far none have even suspected the

truth:

I was a lawyer, I made good money and I worked very hard for many, many

years. The house I sold before I moved here was in a very posh area and

I

came out of the sale with a nice chunk of cash. (Oh yeah, the neighbors

here gossip about how I managed to pay so much down on my house and keep

such a small mortgage--mortgage for tax purposes.) Don't these people

have

anything to do with their time? I know some of them don't. They are

healthy and retired and they seem to get their entertainment from making

trouble for other people.

Last year my neighborhood suffered through three major hurricanes, with

major damage and loss of power and water. I was alone in my house with

no

electricity and no water for a week. Not a single one of my neighbors

knocked on my door to see if I was alive or dead or might need a glass

of

water.

So if you have people who care for you, and family who love you, you

are,

indeed, the LUCKIEST among us. It is at least half the battle to have

help,

in my opinion.

RE: Re: coping with isolation

> Perhaps I'm lucky but whereas I don't see all the people I might if I

> were well, I haven't had disbelief from anyone - other than my first

GP.

> In fact I made a lot of new friends when we moved to our present

> neighbourhood, and being pregnant at the time I was very well. That

> probably helped, as now being so unwell, tey know the 'real' me and

> equally know that I wouldn't be pretending to feel like this. All my

> neighbours just think it's really bad luck, not that I'm in any way

> culpable for my illness.

>

> Rosie

>

>

>

>

> It takes telling them again and again, reminding them again and again.

> 80% of former friends will be gone in a whiff, refusing to acknowledge

> the pain, not wanting to be thrown off orbit, not being able to do

> former activities with you anymore; the new ones or the ones who

stay--

> the ones who stay are terrific, they actually LISTEN and understand,

> but they're rare--new ones...I sometimes say to someone I'm working

> closely with, " So, let me ask you a straightforward question. Do you

> think I'm somaticizing or that the greater part of this is emotional? "

> I'll confront the unspoken thoughts I sense, and then they have to

> say, no, and back off, and I'll explain explicitly what I " m going

> thru, though its a bit like nonstick teflon, they listen and get it

> for a minute, and then later forget it, just don't even remember what

> they were told. Or write a letter, I believe many times they don't

> read it. That's okay. I think you have to maintain your own integrity

> and stay true to yourself and always strive to do the most you can

> with whatever is going on. I've also made some new friends who are

> sort of like me, strong, courageous, but dealing with similar health

> issues. Problem is, most of them can't socialize very often--or some

> live halfway across the country!

>

>

>

>

>

>

> 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]

Hi, I too can be a bit irrational, - not with the people I know

personally but with some situations one comes across in the media.

Here in the UK there has been a case where a woman had her embryos

frozen (why not her eggs I don't know) in advance of cancer therapy.

She is now well as far as cancer is concerned but wants to use her

embryos, but her (now divorced) husband doesn't want to be a father and

so won't allow her to use them. Now I know everyone will have different

ethical ideas about this (personally I regard my dna as quite precious

and would not give it away willingly so I'm with the father as far as

that's concerned). What got me so angry was the uproar of - 'poor

woman, she must be allowed to express her rights as a mother'. Why oh

why isn't she just happy to be well, to be fit and to be able to live a

normal life? Am I really very twisted or does society expect

everything? If I were well I would be just SO happy to be that -

nothing else!

Rosie

Sorry, this really is off topic - I'll shut up now!

Subject: Re: coping with isolation

I am convinced that the most valuable asset to maintaining quality

of life with this is treatment of the mental and emotional challenges

of this illness. (so I hope this thread is allowed as a relavent

thread to discuss)

You mention anger and that really sounded familiar. I have seen

intimately how people with chronic illness can use counterproductive

emotional reactions and how it really really backfires. I used them

myself for a while. You get angry or feel manipulative at healthy

friends who don't understand- and if you don't diffuse it in a healthy

way, you end up alienating yourself from those who may have a little

help to offer even if it is less than you had hoped for. I feel angry

when I see advertisements for pharmaceuticals showing people being

happy now that they are taking the right drug, or angry at the massive

response to helping the Katrina victims while no great mobilization is

made to help our plight. I have to transform it into being happy for

them, that at least their suffering is being helped. Know you are not

alone in this good fight.

Regards,

Dano

> Thank you all.

> I need some time to absorb and process the info you have given.This

was

> great help of you.This seems to be a great problem for chronic

illnesses as

> some of you pointed.I once got worse and found no one around to

help. This

> was about two years ago.I needed some support and no one was

supporting.That

> was the time when I needed most help. At that time I prepared my

self for

> death. That was the bottom point and went through a small personal

> transformation at that point. Stopped expecting help from others and

get

> ready for everything that might happen including death.At that

point,I, by

> chance,started getting little well and after getting better some of my

> friends returned as I started being able to talk again.I must admit

that I

> developed some hate at that time.Nowadays I am going through similar

> process. I think this time call for me is that I need to develop

acceptance

> without hate. Don't know if I will be able to do it.

>

> Best wishes and good luck to you all.

> Nil

>

> Re: coping with isolation

>

>

> >I found that Taurine and Thiamine give me a good mood

> > boost. Feel much more able to cope, and even optimistic!!

> >

> > I take recup. That helps my anxiety too.

> >

> >

> >

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.