Did you ever notice...

[Guest guest]

Our sons are the same way. one of their wifes and the other ones

girlfriend for 4 years now will make excuses too but give it someone on

their side oft he family they run fast and help them out too.I don't

even drive so I am, up the creek without a paddle.I will retake the

date class try to get my learners license in 2009 too.I don't like to

drive far. we have no warm water pools around us at all. even telling

the boys for Christmas massage at a massage school would be good to

get for me for just one month but they said no massage doesnot help

me they still think I have my good days and bad days for attention too.

So i do feel like you.I have also lost allot of friends too and only

have a good one who is also sick and doesn't drive and one who does but

she is to busy to even offer to help me out. But hang in there my

hubby gives me back rubs too but I guess will look into the massage

school after first of the year too. Yes they do run as soon as you say

i would like this or that or can you please help me. I bet allot of

other ladies are like us too in the same boat. But just remember

sweetie we are not accountable for their actions they are so smile and

go on with your life. IS there a community bus or short bus you could

take during the day to go to the YMCA??? But smile seetly nad go on

with yur life through uor disease we reallytend to find out who are

true frineds and family are.I am always reminded by this you canot pick

yuor family but yuo can pick yur friends. Hey wuold anyone at church

offer to take you and swim with you too.

Heidi

[Guest guest]

Susie,

I too have a wonderful husband who is amazing and such a help. I have a 14 year old daughter who also looks out for me and often yells at me to "slow down and sit down!". I have a dear friend who is a fellow horse trainer who helps me slyly without hurting my dignity as a trainer and rider. Then there are the others. Who knows what is up with them. I think helping others is in their language only on their terms. Family falls right into this category. Selfish,self centered,mean and disloyal. It is especially worse if you are the caretaker and have always been that person. People do not want nor do they know how to take care of the "caretaker". It is way out of their comfort zone. They would rather ignore you and act as if nothing is really wrong than to confront that the usually rock that has always been there to make all their boo boo's and troubles go away is in need. It is scary. That is why often

when people get ill with cancer or another illness they lose friends. People just don't often know how to carry they just know how to be carried.

You, Susie will find out who can carry. Those are the friends who will stay through thick and thin. Those are the friends you can call family. You hang in there girl. Everyone here knows how to carry.

Healing hugs,

Sue

From: bostonandfrenchiemom <pjneal4@...>Subject: Did you ever notice...dominie Date: Tuesday, December 9, 2008, 8:23 AM

how the people who often have the most to 'suggest' that we do to 'get better' are usually the ones that run the fastest in the other direction when something that might 'help' involves them?I'm not very good with words here.I think this happens more than we realize in subtle ways but most recently I found out that I can go to the next town (about 20 miles away) any day of the week at certain times of the day at the YMCA and do water excercise. Water excercise in a heated pool is like letting my aching fibro body out of jail...of course there is the 'pay for it later' in fibro flares but still, it is the best way to keep moving that I have found.Anyway, my husband is super supportive and bless his heart he has done and continues to do anything he can to help me including going and doing the water excercise with me. But he has to work and cant always take me so when I decided to do

this, I asked someone else in my family to go on occassion. Even offered to pay for this person's water excercise.That's where all the excuses that amount to nothing came into play. I dont know if I feel like it. I dont like being out after dark..well, fine, there is a day class. Well, the money....I'll pay for you. I dont know, maybe I am being to fussy here but for someone who hands out all the 'what I should really do to make myself better'...I was a little put out that there was no effort to even try just once in a while to help me out.Susie

[Guest guest]

Susie, I feel for you, and all those here, who experience this same

problem. Lack of support from some (or even all) family members, and

friends. As I was reading the replies to your heartfelt message I found

myself getting emotional. It stirred up 'stuff' from my own life, and

then I read Sue's message. About people wanting to be carried but not

able to carry etc. That was it for me. I'll have tears through a sad

movie. Or if someone I care about's in trouble. But, I always hold

things in. Not this time

Yesterday morning, I had a good bawl over this, and thinking about all

of you, going through the same thing. At the end of the day it's all

about kindness. It's either there (in someone) or it's not. A whole book

should be written about the 'Kindness Factor'. If there's one lesson

that's come out of this illness for me. It's to be as kind to myself as

I can be. To ignore people's meanness as much as I can. Wouldn't it be

good Susie, if more of us with these illnesses lived near each other.

And could assist each other where possible. I'd like that. hugs Carlene

>

> how the people who often have the most to 'suggest' that we do

> to 'get better' are usually the ones that run the fastest in the

> other direction when something that might 'help' involves them?

>

> I'm not very good with words here.

>

> I think this happens more than we realize in subtle ways but most

> recently I found out that I can go to the next town (about 20 miles

> away) any day of the week at certain times of the day at the YMCA and

> do water excercise. Water excercise in a heated pool is like letting

> my aching fibro body out of jail...of course there is the 'pay for it

> later' in fibro flares but still, it is the best way to keep moving

> that I have found.

>

> Anyway, my husband is super supportive and bless his heart he has

> done and continues to do anything he can to help me including going

> and doing the water excercise with me. But he has to work and cant

> always take me so when I decided to do this, I asked someone else in

> my family to go on occassion. Even offered to pay for this person's

> water excercise.

>

> That's where all the excuses that amount to nothing came into play.

> I dont know if I feel like it. I dont like being out after

> dark..well, fine, there is a day class. Well, the money....I'll pay

> for you.

>

> I dont know, maybe I am being to fussy here but for someone who hands

> out all the 'what I should really do to make myself better'...I was a

> little put out that there was no effort to even try just once in a

> while to help me out.

>

> Susie

>

[Guest guest]

ladies;

My hubby is really great he cooks does the dishes too when I

don't feel like cooking. He even mops and vacuums too.

When we go grocery shopping I push the cart most times nd then when we

get home he & I bring in the bags then after grocery's are put up he

does the coking that night.

He does help me out and I help him out too. He also has pain 24/7/365

too from a bad car wreck. Also some day's I need the cane other day's i

don't is why he lets me push the shopping cart even for a few items

too. But I am so thankful I have a dear and understanding hubby.

we have been married 35 years this coming Feb 2009. So yes even though

our grown and married sons don't understand at all and think I do it

for attention my hubby & I go through each day together helping each

other out.

Also we give each other moral support on this board too which i am so

thankful for too.

hugs Heidi

[Guest guest]

I have to say, I feel very very fortunate to have a disability placard! That probably sounds odd, but it literally took me 5 yrs to get one and when I finally did, I was trully excited. It felt like I was given my freedom back and knew that I'd be able to go out more often. I've had 3 operations on leg/ankle and with FMS and everything else that I have I have to use a cane and wheelchair. No doctor wanted to commit and because I was going to so many different docs they kept saying get it from this one or that one. Even my primary said you should have had one a long time ago, but because I'm not your treating physician for your conditions I can't give to you. I finally got one when I started seeing the pain mgt. doc earlier this year. He said how ridiculous that I hadn't gotten one way before

now. Believe me I would much rather be healthy, walking freely and parking very far away, rather than be in the position that I'm in.

Since I've had the placard, I've been able to go to more places by myself but have had to leave on many instances when I couldn't find any spots. I live in So. FL so we have a tremendous amount of elderly people and many of them have the placards, so it's very difficult, most times to find these spots and is much more crowded in the winter when the snowbirds come down. These spots are a hot commodity here.

Hugs H

From: heidi <heidilhlokey>Subject: Did you ever notice...dominie@groups .comDate: Tuesday, December 9, 2008, 11:28 AM

Our sons are the same way. one of their wifes and the other ones girlfriend for 4 years now will make excuses too but give it someone on their side oft he family they run fast and help them out too.I don't even drive so I am, up the creek without a paddle.I will retake the date class try to get my learners license in 2009 too.I don't like to drive far. we have no warm water pools around us at all. even telling the boys for Christmas massage at a massage school would be good to get for me for just one month but they said no massage doesnot help me they still think I have my good days and bad days for attention too. So i do feel like you.I have also lost allot of friends too and only have a good one who is also sick and doesn't drive and one who does but she is to busy to even offer to help me out. But hang in there my hubby gives me back rubs too but I guess will look into the massage school after

first of the year too. Yes they do run as soon as you say i would like this or that or can you please help me. I bet allot of other ladies are like us too in the same boat. But just remember sweetie we are not accountable for their actions they are so smile and go on with your life. IS there a community bus or short bus you could take during the day to go to the YMCA??? But smile seetly nad go on with yur life through uor disease we reallytend to find out who are true frineds and family are.I am always reminded by this you canot pick yuor family but yuo can pick yur friends. Hey wuold anyone at church offer to take you and swim with you too.Heidi

Created by Sweet

Assembled by Sandie

Head prepared by Sweet

Dec 2007

[Guest guest]

Carlene, I agree and do wish we lived closer to others in the group. We all have compassion and share the same or similar health conditions and could really help each other, whether it be something as simple as an ear, a shoulder, or many other things. I am one of those that doesn't speak to my family as they're not very nice and it goes very very deep. I tried for many many years, but realized that it was never going to work, especially when you're dealing with selfish cold individuals and when a person is not like that and they are it's very difficult to have a relationship. I have my boyfriend and my two kids and unfortunately most of my friends have left for fear of my asking for help. The friends that I do have left only associate with me on the phone and when I've asked to go to an art show or something with them,

there's always an excuse because they know I would have to be pushed in a wheelchair. I've tried walking in those art shows, but I end up paying for it for the next coupe of weeks. Sometimes it's worth it though, because at least it gets me around other people.

Hugs H

From: carlene.grimshaw <carlene.grimshaw@...>Subject: Re: Did you ever notice...dominie Date: Wednesday, December 10, 2008, 2:46 PM

Susie, I feel for you, and all those here, who experience this sameproblem. Lack of support from some (or even all) family members, andfriends. As I was reading the replies to your heartfelt message I foundmyself getting emotional. It stirred up 'stuff' from my own life, andthen I read Sue's message. About people wanting to be carried but notable to carry etc. That was it for me. I'll have tears through a sadmovie. Or if someone I care about's in trouble. But, I always holdthings in. Not this timeYesterday morning, I had a good bawl over this, and thinking about allof you, going through the same thing. At the end of the day it's allabout kindness. It's either there (in someone) or it's not. A whole bookshould be written about the 'Kindness Factor'. If there's one lessonthat's come out of this illness for me. It's to be as kind to myself asI can be. To ignore people's meanness as much as

I can. Wouldn't it begood Susie, if more of us with these illnesses lived near each other.And could assist each other where possible. I'd like that. hugs Carlene>> how the people who often have the most to 'suggest' that we do> to 'get better' are usually the ones that run the fastest in the> other direction when something that might 'help' involves them?>> I'm not very good with words here.>> I think this happens more than we realize in subtle ways but most> recently I found out that I can go to the next town (about 20 miles> away) any day of the week at certain times of the day at the YMCA and> do water excercise. Water excercise in a heated pool is like letting> my aching fibro body out of

jail...of course there is the 'pay for it> later' in fibro flares but still, it is the best way to keep moving> that I have found.>> Anyway, my husband is super supportive and bless his heart he has> done and continues to do anything he can to help me including going> and doing the water excercise with me. But he has to work and cant> always take me so when I decided to do this, I asked someone else in> my family to go on occassion. Even offered to pay for this person's> water excercise.>> That's where all the excuses that amount to nothing came into play.> I dont know if I feel like it. I dont like being out after> dark..well, fine, there is a day class. Well, the money....I'll pay> for you.>> I dont know, maybe I am being to fussy here but for someone who hands> out all the 'what I should really do to make myself better'...I was

a> little put out that there was no effort to even try just once in a> while to help me out.>> Susie>

[Guest guest]

I have a friend with FMS, whom I adore. It is a different friendship road I travel with her. I would gladly push her in a wheelchair anywhere in the world, just to spend time with her. My heart does go out to all of you.

Liz

From: H. <bookie0415@...>dominie Sent: Wednesday, December 10, 2008 4:54:09 PMSubject: Re: Re: Did you ever notice...

Carlene, I agree and do wish we lived closer to others in the group. We all have compassion and share the same or similar health conditions and could really help each other, whether it be something as simple as an ear, a shoulder, or many other things. I am one of those that doesn't speak to my family as they're not very nice and it goes very very deep. I tried for many many years, but realized that it was never going to work, especially when you're dealing with selfish cold individuals and when a person is not like that and they are it's very difficult to have a relationship. I have my boyfriend and my two kids and unfortunately most of my friends have left for fear of my asking for help. The friends that I do have left only associate with me on the phone and when I've asked to go to an art show or something with them, there's always an excuse because they know I would have to be pushed in a wheelchair. I've

tried walking in those art shows, but I end up paying for it for the next coupe of weeks. Sometimes it's worth it though, because at least it gets me around other people.

Hugs H

From: carlene.grimshaw <carlene.grimshaw>Subject: Re: Did you ever notice...dominie@groups .comDate: Wednesday, December 10, 2008, 2:46 PM

Susie, I feel for you, and all those here, who experience this sameproblem. Lack of support from some (or even all) family members, andfriends. As I was reading the replies to your heartfelt message I foundmyself getting emotional. It stirred up 'stuff' from my own life, andthen I read Sue's message. About people wanting to be carried but notable to carry etc. That was it for me. I'll have tears through a sadmovie. Or if someone I care about's in trouble. But, I always holdthings in. Not this timeYesterday morning, I had a good bawl over this, and thinking about allof you, going through the same thing. At the end of the day it's allabout kindness. It's either there (in someone) or it's not. A whole bookshould be written about the 'Kindness Factor'. If there's one lessonthat's come out of this illness for me. It's to be as kind to myself asI can be. To ignore people's meanness as much as

I can. Wouldn't it begood Susie, if more of us with these illnesses lived near each other.And could assist each other where possible. I'd like that. hugs Carlene>> how the people who often have the most to 'suggest' that we do> to 'get better' are usually the ones that run the fastest in the> other direction when something that might 'help' involves them?>> I'm not very good with words here.>> I think this happens more than we realize in subtle ways but most> recently I found out that I can go to the next town (about 20 miles> away) any day of the week at certain times of the day at the YMCA and> do water excercise. Water excercise in a heated pool is like

letting> my aching fibro body out of jail...of course there is the 'pay for it> later' in fibro flares but still, it is the best way to keep moving> that I have found.>> Anyway, my husband is super supportive and bless his heart he has> done and continues to do anything he can to help me including going> and doing the water excercise with me. But he has to work and cant> always take me so when I decided to do this, I asked someone else in> my family to go on occassion. Even offered to pay for this person's> water excercise.>> That's where all the excuses that amount to nothing came into play.> I dont know if I feel like it. I dont like being out after> dark..well, fine, there is a day class. Well, the money....I'll pay> for you.>> I dont know, maybe I am being to fussy here but for someone who hands> out all the 'what I should

really do to make myself better'...I was a> little put out that there was no effort to even try just once in a> while to help me out.>> Susie>

[Guest guest]

Liz, we need more friends like you. Believe me she needs your friendship, love and support and very much appreciates everything you do for her. I for that matter appreciate everything you do for her! I wish there were more people like you for all of us! Thanks for being there for your friend. Hugs H

From: carlene.grimshaw <carlene.grimshaw>Subject: Re: Did you ever notice...dominie@groups .comDate: Wednesday, December 10, 2008, 2:46 PM

Susie, I feel for you, and all those here, who experience this sameproblem. Lack of support from some (or even all) family members, andfriends. As I was reading the replies to your heartfelt message I foundmyself getting emotional. It stirred up 'stuff' from my own life, andthen I read Sue's message. About people wanting to be carried but notable to carry etc. That was it for me. I'll have tears through a sadmovie. Or if someone I care about's in trouble. But, I always holdthings in. Not this timeYesterday morning, I had a good bawl over this, and thinking about allof you, going through the same thing. At the end of the day it's allabout kindness. It's either there (in someone) or it's not. A whole bookshould be written about the 'Kindness Factor'. If there's one lessonthat's come out of this illness for me. It's to be as kind to myself asI can be. To ignore people's meanness as much as

I can. Wouldn't it begood Susie, if more of us with these illnesses lived near each other.And could assist each other where possible. I'd like that. hugs Carlene>> how the people who often have the most to 'suggest' that we do> to 'get better' are usually the ones that run the fastest in the> other direction when something that might 'help' involves them?>> I'm not very good with words here.>> I think this happens more than we realize in subtle ways but most> recently I found out that I can go to the next town (about 20 miles> away) any day of the week at certain times of the day at the YMCA and> do water excercise. Water excercise in a heated pool is like letting> my aching fibro body out of

jail...of course there is the 'pay for it> later' in fibro flares but still, it is the best way to keep moving> that I have found.>> Anyway, my husband is super supportive and bless his heart he has> done and continues to do anything he can to help me including going> and doing the water excercise with me. But he has to work and cant> always take me so when I decided to do this, I asked someone else in> my family to go on occassion. Even offered to pay for this person's> water excercise.>> That's where all the excuses that amount to nothing came into play.> I dont know if I feel like it. I dont like being out after> dark..well, fine, there is a day class. Well, the money....I'll pay> for you.>> I dont know, maybe I am being to fussy here but for someone who hands> out all the 'what I should really do to make myself better'...I was

a> little put out that there was no effort to even try just once in a> while to help me out.>> Susie>

[Guest guest]

A sweet person - who says they can " sooo relate " to my previous posting

about family, and friends - just e-mailed me. The moment I clicked it

open the tears started flowing, again. This subject area has really got

to me. The flood-gates are opening. I had to hold everything together

for so long for other people. Family, and friends have let me down in

extreme ways. And now the dam has burst. This is so unlike me. But it's

not a bad thing because I think we must have a CFS/FMS tank that fills

up with all these emotions over the years. Perhaps, for some of you,

the dam burst long ago. For me it's spilling over now. And I think I'm

going to feel a lot better for it. Whoever started this subject " did you

ever notice " ...and I think it was Susie? Thank you for being a

'dam-buster'. LOL And for anyone else who has hit this same point as me

I sooo understand how it feels! hugs to all Carlene

[Guest guest]

If this is the best we have, than I'll take it! Although, the alternative would be nicer! Stay well. Hugs H

From: carlene.grimshaw <carlene.grimshaw@...>Subject: Re: Did you ever notice...dominie Date: Thursday, December 11, 2008, 1:50 AM

You're right , we could all help each other so much, if we couldget together. What a nice thought. Guess we'll have to just enjoy doingit here on the Board. What you're sharing about your family, Iunderstand. Because of my own (sometimes extreme) life experiences. It'sdifficult when you have a warm nature and you're dealing with "selfishcold individuals. " And sometimes, as you'd know, it's impossible. Iagree, you (all of us) need to get out around other people. I wouldn'tmind getting out to an art show myself. Take care & hugs Carlene>> Carlene, I agree and do wish we lived closer to others in the group. We all have compassion and share the same or similar health conditionsand could really help each other, whether it be something

as simple asan ear, a shoulder, or many other

[Guest guest]

Hi , I like the way you put it... " crying therapy. " I do feel

better for it, as I'm sure you do. It's a healthy release of emotions.

And yes, you do deserve (we all do) respect, and dignity. Nice to know

it's working for you, too. Thanks for your input! hugs Carlene

>

> Hey Carlene, I'm glad I could contribute to your crying therapy. I

get into these crying fits about every few days buts it

[Guest guest]

Heidi, your hubby sounds caring, and considerate. In the

hubby-lottery-stakes you've got yourself a winner. It's a shame he

suffers pain from the bad car wreck. Supporting, and helping each other

- the way you both do - is touching. hugs Carlene

>

> ladies;

> My hubby is really great he cooks does the dishes too when I

> don't feel like cooking. He even mops and vacuums too.

> When we go grocery shopping I push the cart most times nd then when we

> get home he & I bring in the bags then after grocery's are put up he

> does the coking that night.

> He does help me out and I help him out too. He also has pain 24/7/365

> too from a bad car wreck. Also some day's I need the cane other day's

i

> don't is why he lets me push the shopping cart even for a few items

> too. But I am so thankful I have a dear and understanding hubby.

> we have been married 35 years this coming Feb 2009. So yes even though

> our grown and married sons don't understand at all and think I do it

> for attention my hubby & I go through each day together helping each

> other out.

> Also we give each other moral support on this board too which i am so

> thankful for too.

>

>

> hugs Heidi

>

[Guest guest]

You're very welcome! Glad I could help and please feel free to write to me anytime you need an ear and just to get something out of your system. Hugs H

From: carlene.grimshaw <carlene.grimshaw@...>Subject: Re: Did you ever notice...dominie Date: Thursday, December 11, 2008, 1:58 PM

Hi , I like the way you put it..."crying therapy." I do feelbetter for it, as I'm sure you do. It's a healthy release of emotions.And yes, you do deserve (we all do) respect, and dignity. Nice to knowit's working for you, too. Thanks for your input! hugs Carlene>> Hey Carlene, I'm glad I could contribute to your crying therapy. Iget into these crying fits about every few days buts it

[Guest guest]

Your absolutely right Carlene, Stanley sounds like a wonderful man and so does Doms' husband. They both hit the jackpot in the hubby department! My boyfriend of 5+ yrs is wonderful as well but in a different sort of way. He's very supportive and knows that I'm in a lot of pain and never complains about me not doing things that I used to do. When I first met him I cooked 5-6 days a weeks and always full meals, baked extensively on the holidays, the cleaning, paying all the bills and on it goes. Now I don't cook but maybe 1x per week, don't clean because it's just too painful, I do still pay the bills though. He never complains at all and when I tell him that I feel so badly because I just can't stand in the kitchen too long he tells me not to worry about it and that he's a big boy and can boil water or open a can. This

really bothers me and he knows it. I never bought things in cans unless I was stocking up for the hurricane season. The poor guy cannot cook at all and neither does my son, so I feel that much worse. I can't work and he supports myself and my two children and has never complained about that either. I would literally be on the streets if it wasn't for him.

Knowing all of this the poor guy still wants to marry me! That is a very special man I would say! He's definitely a keeper! I consider myself a very very fortunate person to have such a special man in my life. He doesn't do the massages, grocery shopping or doesn't cook for me, but to me this is nothing compared to what he does do.

We are getting engaged this Christmas and he wanted me to go and pick out the diamond and the setting and he would take it from there. It's absolutely ridiculous how much this costs these days! I made sure he was sitting when he was told how much this would cost as he had no clue whatsoever.

Even though I don't have famiily to speak of I consider myself very fortunate to have such a wonderful man and two wonderful children, who are both in college, getting A's & B's and also working. Have never gotten into trouble with the laws, never have done drugs or drinking. I am trully blessed!!!

Hugs to all and have a very happy holiday season. H

From: carlene.grimshaw <carlene.grimshaw@...>Subject: Re: Did you ever notice...dominie Date: Thursday, December 11, 2008, 2:22 PM

Heidi, your hubby sounds caring, and considerate. In thehubby-lottery- stakes you've got yourself a winner. It's a shame hesuffers pain from the bad car wreck. Supporting, and helping each other- the way you both do - is touching. hugs Carlene>> ladies;> My hubby is really great he cooks does the dishes too when I> don't feel like cooking. He even mops and vacuums too.> When we go grocery shopping I push the cart most times nd then when we> get home he & I bring in the bags then after grocery's are put up he> does the coking that night.> He does help me out and I help him out too. He also has pain 24/7/365> too from a bad car wreck. Also some day's I need the cane other day'si> don't is why he lets me

push the shopping cart even for a few items> too. But I am so thankful I have a dear and understanding hubby.> we have been married 35 years this coming Feb 2009. So yes even though> our grown and married sons don't understand at all and think I do it> for attention my hubby & I go through each day together helping each> other out.> Also we give each other moral support on this board too which i am so> thankful for too.>>> hugs Heidi>

[Guest guest]

I have met Stanley, and he is a very sweet person. Heidi, you are

blessed, and so am I. Without our spouses being so supportive, we

wouldn't be able to accomplish what we do. - Dom

>

>

> Heidi, your hubby sounds caring, and considerate. In the

> hubby-lottery-stakes you've got yourself a winner. It's a shame he

> suffers pain from the bad car wreck. Supporting, and helping each

other

> - the way you both do - is touching. hugs Carlene