Re: Re: I received this this morning. This is Good

[Guest guest]

This is a good find, and true for me as probably most others will find,

except, I am not a single mom, and have not been able to continue my work life,

which I really did enjoy. But I feel the Guilt of my 3 children, who were very

young when I became sick, but not diagnoised untl recent, and they are all grown

and doing well, living ther own lives. I think all the time how I was robbed of

being a MOM as I wanted to be, yet was so sick all the time worse then, would

get to Disney Land, camping etc and shiriveled up into a panicked, human being

as I would each time come down with a big type of pain, medical emergency, and

could not go on rides with them wallk around long, and soon wished I were home!

I was tossed around in the salad bowls of Dr.'s as back then this disease was

not even mentioned, known, so I was just starting to get labled as the

hyperchodfriac, high strung, panic disordered person, and this is what my

children grew up to think I believe, there memories

are of me being sick all the time, never being able to do anything, and anytime

I could go anywhere, but would not go on trips most time, as it became a joke

let's find the hosp. in the area because mom is going to end up there . I think

this is one reason I think I would like to go back and raise my children over

again. Thanks Lori for a good start to my Day Sharon

T

rorasmom wrote:

>

> this is my anthem.... tell it like it is! Gretchen

> Latest Updates from Fibrobook

>

> Empathy vs. Sympathy

> Even though some people may not have thought about the

differences between these two words, they really are huge. And for

those of dealing with continual chronic pain conditions, the

difference between those two words becomes even more important.

> In my own experience, I have found that I do not want sympathy.

I do not want people to feel sorry for me. I do not want people to

stare at me because I limp and walk slowly with a grimace of pain on

my face that I know is there even when I can't see it. I do not

want people to give me questioning looks when they see me get out of

my car in the handicapped space. I do not want to NOT be able to do

all the things I used to be able to do. I did not choose this! I

do not enjoy having to grieve the loss of the person I used to be.

I do not want to have to take narcotic-level pain killers before I

have even gotten out of the house in the mornings! I do not want to

have to plan my entire life around how much pain I'm likely to be in

and how exhausted I'm going to be.

> I DO want people to take me seriously. I DO want doctors,

family and friends to understand that I am not faking it. I am not

trying to get out of doing housework. I do what I can when I can,

and if the rest doesn't get done right then, it is because I can't

do it, not because I don't want to. I DO want and need for my

employer and coworkers to understand that my being here at work

doesn't mean that I am " OK. " The fact that I am here probably means

that I am in more pain than I would have been in if I had stayed at

home, but I've never had the luxury of staying home or of applying

for disability. I have been a single parent from the very start, and

I am the breadwinner. I am doing contract work right now with no

benefits, no sick days. So, if I'm not here, I'm not making any

money.

> I want to be able to do things I enjoy and to enjoy activities

with friends and family. I make plans when I can, but I do need for

people to understand when I have to change my plans at the last

minute because I'm in too much pain. I am not being anti-social. I

am not trying to shut anyone out. But, I also don't want to be a

complete bummer when it is obvious that I do not feel good.

> I was about 35 years old when I first realized that I had

absolutely no recollection of what " feeling good " felt like. That

was 15 years ago. One of the most heartbreaking moments of my

entire life came when I realized that my daughter (now 23) has

absolutely no memory of me NOT in pain. She didn't get to have a

normal mom. I didn't get to take part in a lot of things I should

have been able to do with her. I remember going to a mall to try to

do some Christmas shopping with her about 10 years ago. We parked

close to the stores I wanted to go to, and she went off to do her

own shopping and came back about an hour later to find me in tears

on a bench in the middle of the mall because I was in so much pain.

I could barely walk back out to the car!

> " Normal " people take things like that for granted. What a

simple thing . . . wanting to go Christmas shopping with your

daughter. What a devastating thing to NOT be able to do. I think

that was when my disease really became " real " for my daughter and

she understood.

> So, my pursuit of the distinction between sympathy and empathy

is this. To me, sympathy means having people feel sorry for me. I

need understanding and patience--not pity. EMPATHY, on the other

hand, means that someone truly understands that you are in pain,

that you are exhausted, that you woke up exhausted, that it hurts to

hold your head up (literally!) and make it through the day. Someone

who is empathetic knows that you didn't cancel that lunch date

because you wanted to. That person knows you probably spent the day

in bed with a heating pad or needed to. Someone who is empathetic

realizes that your condition is not your choice, that your house

would be a lot cleaner if you had a choice, but they still offer you

their love, their kindness, and their understanding.

> We need more people like that!

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