Re: Didn't have the energy

[Guest guest]

t 07:28 PM 1/6/99 -0500, you wrote:

>. When I told her I didn't have the

> > " energy " to deal with her problems because I had problems of my own to

>deal

It is just a sad reality that most of the time most people are not

going to understand. And even when they do understand, they may not care

anyway. Doesn't make them bad people. I don't know of anyone around who has

taken an oath to understand & help me. Our problems *are* isolating and

dejecting. But hang on, don't head for the nearest cliff yet.

Ken

[Guest guest]

Hi Ray,

this is not really an answer to your mail. Have you changed anything

to the date your computer is using? I now get your messages from you

dated Wed. Jan.6, 1999, maybe you have had the computer millenium-

tested ?

It is not really important but as I have set my message options to

" select by date " .. your messages end up at the wrong end of the list.

Carla

>

>

>Tracey wrote: The last conversation I had with her was...over

>something that had nothing to do with me, but I > was the one she took

>her anger out on. When I told her I didn't have the > " energy " to

>deal with her problems because I had problems of my own to deal >

>with, she lost her temper...

>

>Tracey,

>I have lost the " energy to deal with " a lot of problems. Stress

>caused by arguing or trying to come to an understanding in a

>misunderstanding greatly aggravate my symptoms. I can't afford the

>luxury of " discussing " disagreements. But my wife and older children

>don't seem to understand.

>

>When we do have a disagreement they want to " force " me to discuss the

>matter with them. Even when I say the issue isn't that important to

>me and I will do it their way, they discount the statement and tell me

>I am copping out.

>

>Does anyone else have this problem?

>Ray

>

>

>

>

>

>

>

>

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

[Guest guest]

>Tracey wrote: Even though my husband and children " understand " that I'm in

constant severe

> pain, I still suffer the brunt of their " disappointment " or have them feel

> that I just don't want to do what they want to.

Tracey, I sure do understand how others misunderstand our pain and

suffering. My wife and I have been married 28 years, plus dating for 4

years before marriage, yet she does not really understand what I am going

through. This is evident in the reaction she has when I just can't do

something, as well as in her statements to me about her anger toward me for

having these diseases.

>It's hard for them to comprehend that my pain is

> not a subjective thing, I don't use it to get out of things I don't want

to

> do. I can feel okay one minute, and 30 minutes later I'm miserable from

side

> effects of pain meds. or pain flares up while trying to do chores around

the

> house -- I can't just " turn it off " because it's inconvenient for other

> people.

Would that we could just turn it off. If we could, I never ever would turn

it on again. But that is an unrealistic expectation by others about us, as

well as for ourselves. My wife does not understand how we can plan to do

something for days, but when it comes time for the party, dinner, outing,

etc., I cannot do it. My two oldest children (age 25 & 23 with families of

their own) come closer to understanding this than my wife. Yet, when there

is a disagreement as a result of my not being able to physically " keep up "

with the rest of the family, they all seem to gang up on me. This is

partially my own fault for pretending for too many years that I was not in

pain.

>Many days I go lay down in our bedroom crying because I feel I've

> let them down because I'm trying to take care of myself, but unless they

can

> " walk in my shoes " they will never be able to understand the true

> circumstances. They try their best to understand, but it gets very old

after

> a period of time. My husband gets tired of hearing that I don't feel good

or

> I don't want to do something.

The frustrations you are feeling about how your family responds to your

physical condition must be overwhelming. The feeling of loneliness and

emotional distress this causes for you is one more insult you are having to

endure. I went to a counselor three years ago, then marriage counseling

with my wife, then family counseling. I thought we had fixed the problem of

their unrealistic assumptions about what I could or couldn't do, as well as

my displaced anger toward the disease, but directed toward my family. Now

my wife is indicating by her words and actions that she is intensely angry

at me again, when she is really angry at the fact that I am greatly

handicapped.

> It's never a good situation for anyone who suffers chronic pain, so I

spend a

> great deal of time praying for patience and understanding. I have my

" good

> days and bad days " and manage to struggle through the bad ones!!

Sometimes God is the only source of comfort we have.

> I love my husband more than anything in the world, and it still surprises

me that he's

> " stuck around " through all the things that I've done to myself because of

> chronic pain (and the depression that goes along with it). I've found

that

> even though you love someone and you can " talk " to them about how you feel

> and why, they still can't comprehend how " bad " or " miserable " you feel --

> it's not real to them because they can't feel it.

Though your family may try to understand, you are right when you say that

they can't comprehend your pain nor your physical discomfort. Nor would we

want them to endure what we have and are going through.

> All we can do is hang on and pray for solace when our feelings are hurt

> because of the attitudes of others.

I have come to the conclusion that unless you share how you are feeling, no

matter how unrealistic it seems to others, the stress of being silent about

your condition will only aggravate your symptoms. Nor does getting angry

help you to manage your pain and discomfort. It takes a delicate balance to

maintain your equilibrium. I cannot argue with my wife or children. If

they persist in trying to argue with me about something, I have to walk

away. Of course, this has it's own negative consequences.

I had thought that if I just " gave in " to their point of view about

something, that the argument would end. Now they accuse me of not being

honest about my feelings. No one can seem to understand that I am genuinely

adopting their point of view in order to maintain that delicate balance.

Even my wife's counselor hounds me to " let it all hang out. " No one seems

to understand thay I cannot physically talk long enough to express my

feelings. Nor does anyone believe that I, who previously was the

life-of-the-party, cannot keep on being that anymore.

> Love and prayers,

> Tracey

Sometimes, Tracey, all we have left is love and prayers. I pray that God

will answer yours, or at least make you a way in the wilderness that leads

to the kind of peace only God can give.

Ray

[Guest guest]

>Tracey wrote: Even though my husband and children " understand " that I'm in

constant severe

> pain, I still suffer the brunt of their " disappointment " or have them feel

> that I just don't want to do what they want to.

Tracey, I sure do understand how others misunderstand our pain and

suffering. My wife and I have been married 28 years, plus dating for 4

years before marriage, yet she does not really understand what I am going

through. This is evident in the reaction she has when I just can't do

something, as well as in her statements to me about her anger toward me for

having these diseases.

>It's hard for them to comprehend that my pain is

> not a subjective thing, I don't use it to get out of things I don't want

to

> do. I can feel okay one minute, and 30 minutes later I'm miserable from

side

> effects of pain meds. or pain flares up while trying to do chores around

the

> house -- I can't just " turn it off " because it's inconvenient for other

> people.

Would that we could just turn it off. If we could, I never ever would turn

it on again. But that is an unrealistic expectation by others about us, as

well as for ourselves. My wife does not understand how we can plan to do

something for days, but when it comes time for the party, dinner, outing,

etc., I cannot do it. My two oldest children (age 25 & 23 with families of

their own) come closer to understanding this than my wife. Yet, when there

is a disagreement as a result of my not being able to physically " keep up "

with the rest of the family, they all seem to gang up on me. This is

partially my own fault for pretending for too many years that I was not in

pain.

>Many days I go lay down in our bedroom crying because I feel I've

> let them down because I'm trying to take care of myself, but unless they

can

> " walk in my shoes " they will never be able to understand the true

> circumstances. They try their best to understand, but it gets very old

after

> a period of time. My husband gets tired of hearing that I don't feel good

or

> I don't want to do something.

The frustrations you are feeling about how your family responds to your

physical condition must be overwhelming. The feeling of loneliness and

emotional distress this causes for you is one more insult you are having to

endure. I went to a counselor three years ago, then marriage counseling

with my wife, then family counseling. I thought we had fixed the problem of

their unrealistic assumptions about what I could or couldn't do, as well as

my displaced anger toward the disease, but directed toward my family. Now

my wife is indicating by her words and actions that she is intensely angry

at me again, when she is really angry at the fact that I am greatly

handicapped.

> It's never a good situation for anyone who suffers chronic pain, so I

spend a

> great deal of time praying for patience and understanding. I have my

" good

> days and bad days " and manage to struggle through the bad ones!!

Sometimes God is the only source of comfort we have.

> I love my husband more than anything in the world, and it still surprises

me that he's

> " stuck around " through all the things that I've done to myself because of

> chronic pain (and the depression that goes along with it). I've found

that

> even though you love someone and you can " talk " to them about how you feel

> and why, they still can't comprehend how " bad " or " miserable " you feel --

> it's not real to them because they can't feel it.

Though your family may try to understand, you are right when you say that

they can't comprehend your pain nor your physical discomfort. Nor would we

want them to endure what we have and are going through.

> All we can do is hang on and pray for solace when our feelings are hurt

> because of the attitudes of others.

I have come to the conclusion that unless you share how you are feeling, no

matter how unrealistic it seems to others, the stress of being silent about

your condition will only aggravate your symptoms. Nor does getting angry

help you to manage your pain and discomfort. It takes a delicate balance to

maintain your equilibrium. I cannot argue with my wife or children. If

they persist in trying to argue with me about something, I have to walk

away. Of course, this has it's own negative consequences.

I had thought that if I just " gave in " to their point of view about

something, that the argument would end. Now they accuse me of not being

honest about my feelings. No one can seem to understand that I am genuinely

adopting their point of view in order to maintain that delicate balance.

Even my wife's counselor hounds me to " let it all hang out. " No one seems

to understand thay I cannot physically talk long enough to express my

feelings. Nor does anyone believe that I, who previously was the

life-of-the-party, cannot keep on being that anymore.

> Love and prayers,

> Tracey

Sometimes, Tracey, all we have left is love and prayers. I pray that God

will answer yours, or at least make you a way in the wilderness that leads

to the kind of peace only God can give.

Ray

[Guest guest]

Ray,

Even though my husband and children " understand " that I'm in constant severe

pain, I still suffer the brunt of their " disappointment " or have them feel

that I just don't want to do what they want to. When ny calls from work

at the 11th hour and wants to have friends over, and I'm not immediately

enthusiastic I'm taking away from his fun and recreation, or if the kids want

to go somewhere and I say " later " they usually get upset and say that " later "

means " never " and so on. It's hard for them to comprehend that my pain is

not a subjective thing, I don't use it to get out of things I don't want to

do. I can feel okay one minute, and 30 minutes later I'm miserable from side

effects of pain meds. or pain flares up while trying to do chores around the

house -- I can't just " turn it off " because it's inconvenient for other

people. Many days I go lay down in our bedroom crying because I feel I've

let them down because I'm trying to take care of myself, but unless they can

" walk in my shoes " they will never be able to understand the true

circumstances. They try their best to understand, but it gets very old after

a period of time. My husband gets tired of hearing that I don't feel good or

I don't want to do something.

It's never a good situation for anyone who suffers chronic pain, so I spend a

great deal of time praying for patience and understanding. I have my " good

days and bad days " and manage to struggle through the bad ones!! I love my

husband more than anything in the world, and it still surprises me that he's

" stuck around " through all the things that I've done to myself because of

chronic pain (and the depression that goes along with it). I've found that

even though you love someone and you can " talk " to them about how you feel

and why, they still can't comprehend how " bad " or " miserable " you feel --

it's not real to them because they can't feel it.

All we can do is hang on and pray for solace when our feelings are hurt

because of the attitudes of others.

Love and prayers,

Tracey

[Guest guest]

Ray,

Even though my husband and children " understand " that I'm in constant severe

pain, I still suffer the brunt of their " disappointment " or have them feel

that I just don't want to do what they want to. When ny calls from work

at the 11th hour and wants to have friends over, and I'm not immediately

enthusiastic I'm taking away from his fun and recreation, or if the kids want

to go somewhere and I say " later " they usually get upset and say that " later "

means " never " and so on. It's hard for them to comprehend that my pain is

not a subjective thing, I don't use it to get out of things I don't want to

do. I can feel okay one minute, and 30 minutes later I'm miserable from side

effects of pain meds. or pain flares up while trying to do chores around the

house -- I can't just " turn it off " because it's inconvenient for other

people. Many days I go lay down in our bedroom crying because I feel I've

let them down because I'm trying to take care of myself, but unless they can

" walk in my shoes " they will never be able to understand the true

circumstances. They try their best to understand, but it gets very old after

a period of time. My husband gets tired of hearing that I don't feel good or

I don't want to do something.

It's never a good situation for anyone who suffers chronic pain, so I spend a

great deal of time praying for patience and understanding. I have my " good

days and bad days " and manage to struggle through the bad ones!! I love my

husband more than anything in the world, and it still surprises me that he's

" stuck around " through all the things that I've done to myself because of

chronic pain (and the depression that goes along with it). I've found that

even though you love someone and you can " talk " to them about how you feel

and why, they still can't comprehend how " bad " or " miserable " you feel --

it's not real to them because they can't feel it.

All we can do is hang on and pray for solace when our feelings are hurt

because of the attitudes of others.

Love and prayers,

Tracey

[Guest guest]

All we can do is hang on and pray for solace when our feelings are hurt

because of the attitudes of others.

Hi Tracey,

What's so hard for me to believe is that it's our families that we have the

hardest time with. I have always felt that they should be the first ones to

understand. God bless my husband...he is really good about accepting my

ongoing, unrelenting, and unforgiving 24-hour chronic pain. My kids, my own

family..even to my identical twin sister...seems to care less. This has

always hurt me deeply. I live so far away from my family and, you'd think

that when I called home, one of them would ask how I was doing...I finally

said something in a letter and now one sister makes it a " point " to ask how

I'm doing. She never did before and I can't tell if it's from the heart or

because I said something...I want to believe it's from the heart but, it's

always thrown in on the goodbye...I feel I should have not said anything.

I understand a lot of what you are saying and I feel we all experience some

or all of the same reactions from family.

God Bless!

K.