Re: Dealing with Family - To All

[Guest guest]

Barbara, I like your idea. I am experimenting with this very

subject. Last night I went to my dear friends. She is like a

daughter and sister to me. She remembers me with RSD in the past

but I really put on a face back then and left her in the dark. I

don't want to do that this time and told her so. So immediately

said she wanted to know everything and wanted to be there for me

after I emailed her a copy of the Open letter I found on the site.

At least that was a start. I'd really like to hear how others have

been successful in creating a network of support with their family

and friends and what hasn't worked as well. Thanks for the idea.

HOpe others join in. With love, Lyn

BARBARA TORREY <torreyb@p...> wrote:

> To all - After reading these posts and others of late, I wonder

if we might pull together some ideas of ways that we've found that

have worked for us in dealing with family members. In my own

situation, I have two sisters who have found ways to offer support

in really different ways.Interestingly, the sister who I have been

closest to throughout my life has offered the more " task-oriented "

kind of support. Although this has been helpful, I find myself

feeling incredibly hurt. After reflecting on how she responded in a

similar way when my mother was dying, I think I'm coming to realize

that maybe the reason that she doesn't offer emotional support of

any form is that it might put her in closer touch with the grief

that she feels about what I'm going through.

> Maybe it would help each of us if we talk about what has helped

us in our family interactions. It might just help out someone else

here and ease their sadness and frustration. Barbara

>

> Pamela Fredette <patches13033@y...> wrote:

> HI JANET, I HOPE THAT YOU ARE A LITTLE BETTER TODAY.. WELL I AM

WHERE YOU ARE WITH YOUR FAMILY.

> nannyshere <nannyshere@m...> wrote: Just when I think I can

handle this higher pain level, they have to go and say

> something stupid that sets me into a spin. My 14 yr. old

granddaugther always calls me a hyprocontriac.

[Guest guest]

Barbara

I havent found anything yet that has helped me in dealing with my

family about whats going on. Most of the time I dont say much at all.

I take my meds and I go to my appointments. I continue to care for my

home and make the family meals..it takes me longer and Im more tired

than I used to be at the end of the day but a part of me still

ignores whats going on and is too stubborn to ask for help. The other

part of me just doesnt want to listen to how I " should " be doing

better because its been a year and why aren't I improving? I'm tired

of hearing it and tired of explaining it. These are questions I can't

answer and each time I try it stresses me more so I just choose to

handle my own things for as long as I possibly can until such time as

I cant do it any longer and hope that by then my family will start to

realize that this isnt something that will go away unless there is

some miracle intervention.

Friends that I had when I worked have faded into the woodwork since I

left work almost 6 months ago. I will be returning part time to the

facility but not to the position I was in before. This will put me in

contact with these people again but I doubt I will still see them as

friends. Only one person has checked on me since I left there so

abruptly in June and she no longer works there.

Friends outside of work rarely call either since this diagnosis,

which I figure that they are either afraid or unsure of what to say.

Those who have met me from here can attest that I'm still a fully

functional person with no outward physical signs of this monster, so

what makes me so hard to spend time with? Who knows?

The doctors and their false findings make it difficult for family to

understand whats really going on as well. I have had a half dozen

different diagnosis with this thing and most of them were wrong BUT

those dx's were easy fixes and thats what everyone is looking for..I

WISH it were an easy fix but its not and this is reality for me. The

meds, the pain, the therapy and the fatigue..this is ME...if it

werent for those here on this digest I'm not sure I could keep

spirits as high as I have..this group is a life saver in many

ways..thank you.

Hugs to everyone

Donna

> Maybe it would help each of us if we talk about what has helped

us in our family interactions. It might just help out someone else

here and ease their sadness and frustration. Barbara

>

[Guest guest]

Barbara

I havent found anything yet that has helped me in dealing with my

family about whats going on. Most of the time I dont say much at all.

I take my meds and I go to my appointments. I continue to care for my

home and make the family meals..it takes me longer and Im more tired

than I used to be at the end of the day but a part of me still

ignores whats going on and is too stubborn to ask for help. The other

part of me just doesnt want to listen to how I " should " be doing

better because its been a year and why aren't I improving? I'm tired

of hearing it and tired of explaining it. These are questions I can't

answer and each time I try it stresses me more so I just choose to

handle my own things for as long as I possibly can until such time as

I cant do it any longer and hope that by then my family will start to

realize that this isnt something that will go away unless there is

some miracle intervention.

Friends that I had when I worked have faded into the woodwork since I

left work almost 6 months ago. I will be returning part time to the

facility but not to the position I was in before. This will put me in

contact with these people again but I doubt I will still see them as

friends. Only one person has checked on me since I left there so

abruptly in June and she no longer works there.

Friends outside of work rarely call either since this diagnosis,

which I figure that they are either afraid or unsure of what to say.

Those who have met me from here can attest that I'm still a fully

functional person with no outward physical signs of this monster, so

what makes me so hard to spend time with? Who knows?

The doctors and their false findings make it difficult for family to

understand whats really going on as well. I have had a half dozen

different diagnosis with this thing and most of them were wrong BUT

those dx's were easy fixes and thats what everyone is looking for..I

WISH it were an easy fix but its not and this is reality for me. The

meds, the pain, the therapy and the fatigue..this is ME...if it

werent for those here on this digest I'm not sure I could keep

spirits as high as I have..this group is a life saver in many

ways..thank you.

Hugs to everyone

Donna

> Maybe it would help each of us if we talk about what has helped

us in our family interactions. It might just help out someone else

here and ease their sadness and frustration. Barbara

>

[Guest guest]

Barbara

I havent found anything yet that has helped me in dealing with my

family about whats going on. Most of the time I dont say much at all.

I take my meds and I go to my appointments. I continue to care for my

home and make the family meals..it takes me longer and Im more tired

than I used to be at the end of the day but a part of me still

ignores whats going on and is too stubborn to ask for help. The other

part of me just doesnt want to listen to how I " should " be doing

better because its been a year and why aren't I improving? I'm tired

of hearing it and tired of explaining it. These are questions I can't

answer and each time I try it stresses me more so I just choose to

handle my own things for as long as I possibly can until such time as

I cant do it any longer and hope that by then my family will start to

realize that this isnt something that will go away unless there is

some miracle intervention.

Friends that I had when I worked have faded into the woodwork since I

left work almost 6 months ago. I will be returning part time to the

facility but not to the position I was in before. This will put me in

contact with these people again but I doubt I will still see them as

friends. Only one person has checked on me since I left there so

abruptly in June and she no longer works there.

Friends outside of work rarely call either since this diagnosis,

which I figure that they are either afraid or unsure of what to say.

Those who have met me from here can attest that I'm still a fully

functional person with no outward physical signs of this monster, so

what makes me so hard to spend time with? Who knows?

The doctors and their false findings make it difficult for family to

understand whats really going on as well. I have had a half dozen

different diagnosis with this thing and most of them were wrong BUT

those dx's were easy fixes and thats what everyone is looking for..I

WISH it were an easy fix but its not and this is reality for me. The

meds, the pain, the therapy and the fatigue..this is ME...if it

werent for those here on this digest I'm not sure I could keep

spirits as high as I have..this group is a life saver in many

ways..thank you.

Hugs to everyone

Donna

> Maybe it would help each of us if we talk about what has helped

us in our family interactions. It might just help out someone else

here and ease their sadness and frustration. Barbara

>

[Guest guest]

Friends that I had when I worked have faded into the woodwork since I

left work almost 6 months ago. I will be returning part time to the

facility but not to the position I was in before. This will put me in

contact with these people again but I doubt I will still see them as

friends. Only one person has checked on me since I left there so

abruptly in June and she no longer works there.

Friends outside of work rarely call either since this diagnosis,

which I figure that they are either afraid or unsure of what to say.

Those who have met me from here can attest that I'm still a fully

functional person with no outward physical signs of this monster, so

what makes me so hard to spend time with? Who knows?

The doctors and their false findings make it difficult for family to

understand whats really going on as well. I have had a half dozen

different diagnosis with this thing and most of them were wrong BUT

those dx's were easy fixes and thats what everyone is looking for..I

WISH it were an easy fix but its not and this is reality for me. The

meds, the pain, the therapy and the fatigue..this is ME...if it

werent for those here on this digest I'm not sure I could keep

spirits as high as I have..this group is a life saver in many

Donna,

We are always here for you. We have had friends that have stopped coming

over or calling. I have my sister who understands and is very supportive.

So that is a big help my husband tries but then sometimes he gets into this,

we will find something or someone to help me, or goes back to the PT route,

never helped me, in fact the first time I think they did more harm than good

So I don't have any easy answers because even though my oldest daughter

supports me, my youngest wishes it will all go away and would rather not

talk about it at all. So as long as I pretend I am not at a 7 or higher on

the pain scale then everything is okay, but if I groan or make any noise

when I move then I am told that I am being annoying.

I heard this interview once from a woman who was a journalist who had

terminal cancer and she was asked what could people do to help and she said

they could come and take her children to the park or bring some homemade

cookies over. She also talked about friends that never call or come by. I

think some people just can't deal with chronic or terminal illnesses. One

couple who were well we thought they were close friends with. They haven't

called or come by in over a year. Last time I spoke to her was when I was

first diagnosed, she is an RN. They did invite us to their sons graduation

from high school and their daughters from college this last June.

I wish I knew what makes people just drop out of our lives. I do know that

when my Mother died I never really understood what it meant for people to

come to be a support to you rather than because they knew the person who

died. So maybe these people don't get what it is like to be trapped in a

body that limits what we can or can't do depending on how bad our pain is or

isn't.

I just don't get it especially when family turn against us or are angry at

us. We could probably talk this out for eternity and never come up with a

definitive answer.

take care and just remember I and the rest of the group will always be here

for you.

Lin

[Guest guest]

Friends that I had when I worked have faded into the woodwork since I

left work almost 6 months ago. I will be returning part time to the

facility but not to the position I was in before. This will put me in

contact with these people again but I doubt I will still see them as

friends. Only one person has checked on me since I left there so

abruptly in June and she no longer works there.

Friends outside of work rarely call either since this diagnosis,

which I figure that they are either afraid or unsure of what to say.

Those who have met me from here can attest that I'm still a fully

functional person with no outward physical signs of this monster, so

what makes me so hard to spend time with? Who knows?

The doctors and their false findings make it difficult for family to

understand whats really going on as well. I have had a half dozen

different diagnosis with this thing and most of them were wrong BUT

those dx's were easy fixes and thats what everyone is looking for..I

WISH it were an easy fix but its not and this is reality for me. The

meds, the pain, the therapy and the fatigue..this is ME...if it

werent for those here on this digest I'm not sure I could keep

spirits as high as I have..this group is a life saver in many

Donna,

We are always here for you. We have had friends that have stopped coming

over or calling. I have my sister who understands and is very supportive.

So that is a big help my husband tries but then sometimes he gets into this,

we will find something or someone to help me, or goes back to the PT route,

never helped me, in fact the first time I think they did more harm than good

So I don't have any easy answers because even though my oldest daughter

supports me, my youngest wishes it will all go away and would rather not

talk about it at all. So as long as I pretend I am not at a 7 or higher on

the pain scale then everything is okay, but if I groan or make any noise

when I move then I am told that I am being annoying.

I heard this interview once from a woman who was a journalist who had

terminal cancer and she was asked what could people do to help and she said

they could come and take her children to the park or bring some homemade

cookies over. She also talked about friends that never call or come by. I

think some people just can't deal with chronic or terminal illnesses. One

couple who were well we thought they were close friends with. They haven't

called or come by in over a year. Last time I spoke to her was when I was

first diagnosed, she is an RN. They did invite us to their sons graduation

from high school and their daughters from college this last June.

I wish I knew what makes people just drop out of our lives. I do know that

when my Mother died I never really understood what it meant for people to

come to be a support to you rather than because they knew the person who

died. So maybe these people don't get what it is like to be trapped in a

body that limits what we can or can't do depending on how bad our pain is or

isn't.

I just don't get it especially when family turn against us or are angry at

us. We could probably talk this out for eternity and never come up with a

definitive answer.

take care and just remember I and the rest of the group will always be here

for you.

Lin

[Guest guest]

Lyn

Thank you...Its frustrating to me when I watch others in my house who

cant function because of pain, but its fleeting pain, yet my pain

seems to go by oblivious to everyone...I still maintain my home, cook

meals, fold laundry and rise every morning at 6 to get my daughter

off to school. Im not asking for people to see me as a saint just

take over every so often or at least acknowledge that I too am in

pain and have been since day one. There are days when I simply cannot

do it and want to sleep the day away, its not in me to do it just yet

though.

I am happy to be returning to work part time but my pain dr has

limited my restrictions greatly so that if they want to accept them

as they are written then I wont be doing much more at work than I am

at home. I have hrs as tolerated and a 5 pound max lifting

restrictions. The restriction has no time listed on it and probably

wont for quite awhile. They have to accept that I have OT and PT

appts, neurological appts and pain clinic appts and that I will

schedule my work around them not the other way around.

Seeing people outside of home will be nice but I know its going to be

a strain on my system which is already miserable because of the

weather, the change in burning and the fac that Im weaning off of

Ultram and switching to percocet.

As far as people ever understanding this, haha..even my sister in law

with fibromyalgia doesnt understand and asked me the other day when I

was going back to work! I almost said the same day as you...UGH!!

Anyway, if anyone ever figures out the magic potion to getting their

family and friends to be more compassionate, please let the rest of

us know!

Hugs

Donna

> take care and just remember I and the rest of the group will always

be here

> for you.

[Guest guest]

Lyn

Thank you...Its frustrating to me when I watch others in my house who

cant function because of pain, but its fleeting pain, yet my pain

seems to go by oblivious to everyone...I still maintain my home, cook

meals, fold laundry and rise every morning at 6 to get my daughter

off to school. Im not asking for people to see me as a saint just

take over every so often or at least acknowledge that I too am in

pain and have been since day one. There are days when I simply cannot

do it and want to sleep the day away, its not in me to do it just yet

though.

I am happy to be returning to work part time but my pain dr has

limited my restrictions greatly so that if they want to accept them

as they are written then I wont be doing much more at work than I am

at home. I have hrs as tolerated and a 5 pound max lifting

restrictions. The restriction has no time listed on it and probably

wont for quite awhile. They have to accept that I have OT and PT

appts, neurological appts and pain clinic appts and that I will

schedule my work around them not the other way around.

Seeing people outside of home will be nice but I know its going to be

a strain on my system which is already miserable because of the

weather, the change in burning and the fac that Im weaning off of

Ultram and switching to percocet.

As far as people ever understanding this, haha..even my sister in law

with fibromyalgia doesnt understand and asked me the other day when I

was going back to work! I almost said the same day as you...UGH!!

Anyway, if anyone ever figures out the magic potion to getting their

family and friends to be more compassionate, please let the rest of

us know!

Hugs

Donna

> take care and just remember I and the rest of the group will always

be here

> for you.

[Guest guest]

Lyn

Thank you...Its frustrating to me when I watch others in my house who

cant function because of pain, but its fleeting pain, yet my pain

seems to go by oblivious to everyone...I still maintain my home, cook

meals, fold laundry and rise every morning at 6 to get my daughter

off to school. Im not asking for people to see me as a saint just

take over every so often or at least acknowledge that I too am in

pain and have been since day one. There are days when I simply cannot

do it and want to sleep the day away, its not in me to do it just yet

though.

I am happy to be returning to work part time but my pain dr has

limited my restrictions greatly so that if they want to accept them

as they are written then I wont be doing much more at work than I am

at home. I have hrs as tolerated and a 5 pound max lifting

restrictions. The restriction has no time listed on it and probably

wont for quite awhile. They have to accept that I have OT and PT

appts, neurological appts and pain clinic appts and that I will

schedule my work around them not the other way around.

Seeing people outside of home will be nice but I know its going to be

a strain on my system which is already miserable because of the

weather, the change in burning and the fac that Im weaning off of

Ultram and switching to percocet.

As far as people ever understanding this, haha..even my sister in law

with fibromyalgia doesnt understand and asked me the other day when I

was going back to work! I almost said the same day as you...UGH!!

Anyway, if anyone ever figures out the magic potion to getting their

family and friends to be more compassionate, please let the rest of

us know!

Hugs

Donna

> take care and just remember I and the rest of the group will always

be here

> for you.

[Guest guest]

Donna - Having read your note, I was especially struck by the first part of it. With your going back to work, is there a way that you could have a 'family meeting" and share the first part of your note? Let them know that the "gig is up," that with your going back to work you will be removing the halo that you've been wearing for so long and hoping/expecting for family members to start sharing the responsibilities of keeping the house going. I'm just concerned that, at least for a time, the adjustment to a return-to-work will be taxing and you will need every ounce of support from your family to make it work. Thinking of you - BarbaraDonna wrote:

LynThank you...Its frustrating to me when I watch others in my house who cant function because of pain, but its fleeting pain, yet my pain seems to go by oblivious to everyone...I still maintain my home, cook meals, fold laundry and rise every morning at 6 to get my daughter off to school. Im not asking for people to see me as a saint just take over every so often or at least acknowledge that I too am in pain and have been since day one. There are days when I simply cannot do it and want to sleep the day away, its not in me to do it just yet though.I am happy to be returning to work part time but my pain dr has limited my restrictions greatly so that if they want to accept them as they are written then I wont be doing much more at work than I am

at home. I have hrs as tolerated and a 5 pound max lifting restrictions. The restriction has no time listed on it and probably wont for quite awhile. They have to accept that I have OT and PT appts, neurological appts and pain clinic appts and that I will schedule my work around them not the other way around. Seeing people outside of home will be nice but I know its going to be a strain on my system which is already miserable because of the weather, the change in burning and the fac that Im weaning off of Ultram and switching to percocet. As far as people ever understanding this, haha..even my sister in law with fibromyalgia doesnt understand and asked me the other day when I was going back to work! I almost said the same day as you...UGH!!Anyway, if anyone ever figures out the magic potion to getting their family and friends to be more compassionate, please let the rest of us know!HugsDonna> take care and

just remember I and the rest of the group will always be here> for you.

[Guest guest]

Donna - Having read your note, I was especially struck by the first part of it. With your going back to work, is there a way that you could have a 'family meeting" and share the first part of your note? Let them know that the "gig is up," that with your going back to work you will be removing the halo that you've been wearing for so long and hoping/expecting for family members to start sharing the responsibilities of keeping the house going. I'm just concerned that, at least for a time, the adjustment to a return-to-work will be taxing and you will need every ounce of support from your family to make it work. Thinking of you - BarbaraDonna wrote:

LynThank you...Its frustrating to me when I watch others in my house who cant function because of pain, but its fleeting pain, yet my pain seems to go by oblivious to everyone...I still maintain my home, cook meals, fold laundry and rise every morning at 6 to get my daughter off to school. Im not asking for people to see me as a saint just take over every so often or at least acknowledge that I too am in pain and have been since day one. There are days when I simply cannot do it and want to sleep the day away, its not in me to do it just yet though.I am happy to be returning to work part time but my pain dr has limited my restrictions greatly so that if they want to accept them as they are written then I wont be doing much more at work than I am

at home. I have hrs as tolerated and a 5 pound max lifting restrictions. The restriction has no time listed on it and probably wont for quite awhile. They have to accept that I have OT and PT appts, neurological appts and pain clinic appts and that I will schedule my work around them not the other way around. Seeing people outside of home will be nice but I know its going to be a strain on my system which is already miserable because of the weather, the change in burning and the fac that Im weaning off of Ultram and switching to percocet. As far as people ever understanding this, haha..even my sister in law with fibromyalgia doesnt understand and asked me the other day when I was going back to work! I almost said the same day as you...UGH!!Anyway, if anyone ever figures out the magic potion to getting their family and friends to be more compassionate, please let the rest of us know!HugsDonna> take care and

just remember I and the rest of the group will always be here> for you.