Venting and Really Need Advise

[Guest guest]

Good Morning Everyone,

Hope everyone is having a pain-free day.

I was posting today to tell you my story and see what you all would

do. Ok, here it goes.

In my earlier posts I stated I have Lupus,FM,mild MS and suffer from

seizures. I currently work part time and I also have my own band.

The band does not work every weekend otherwise I would not be able to

do it. I have been so hurt and so frustrated by what I've been having

to put up with! There are two other girls in the band and two guys.

Well this past weekend (Labor Day Weekend) and for most of the week

prior, I was in a terrible flare and bedridden. Thank goodness we

were not working that weekend. The thing is I am so tired of everyone

telling me what I should and should not be doing. For some time, when

I was ill, I would not tell any of them because all they would do is

shoot me down and talk behind my back saying I'm not taking care of

myself or " I'm milking it or faking it! " then after awhile they

started to wonder what was happening. I explained how I felt at that

time and thought everything was resolved. So this time when I went

into the flare my husband told everyone. Well the same thing happened

again! Accusing me of not taking care of myself yada yada. I have

been ill for quite sometime and as you all know, you get used to what

your body tells you. And what you can and cannot do. There are other

things that go on too. I am a very easy going person who is too

sensitive for my own good sometimes. Therefore there are too many

chiefs and not enough indians always trying to tell me what to do. I

don't mind the advise at all, it's the way it's proposed to me. Like

I'm stupid! I'm so sorry for venting but I have been so stressed out

about this for quite awhile now. I love to sing and have for 30 years

of my life. It's very theraputic for me and USUALLY helps with

stress. But lately it's not the case. I'm stressed out all the time

and it's no longer fun as it should be. I am strongly thinking of

going in a new direction and starting over. With all new people! The

think is It's going to be hard for me because well, I thought they

were my friends. Guess not. I hope this post will be ok. I know it's

off the topic of our illness but I posted because of the extreme

stress it has caused me which is contributing to the flares that's

happening. Thank you all so much for listening!

Hugs,

Annie

[Guest guest]

Annie,

It's quite all right with me to post these things.

I feel for you and understand completely what you are

going through as I'm sure many of us here in this

group do as well.

" Friends " are really hard to come by. Real friends

that is. There are those I have considered my friends

in the past and they have proven me wrong. My true

friends are my sisters...manly because they are my

sisters, but also as we have grown older they have

became my BEST FRIENDS, but I have one person from

high school (I'm 32 now) that has actually stayed my

FRIEND. I wish you the best with this band and the

group of people there. Just remember, You are not

stupid, you are suffering and if they can not

understand that then they are not your friends. And

that is really hard to face at times and hard to deal

with. If you ever need to talk, feel free to email me.

a Faye

__________________________________________________

[Guest guest]

Annie,

It's quite all right with me to post these things.

I feel for you and understand completely what you are

going through as I'm sure many of us here in this

group do as well.

" Friends " are really hard to come by. Real friends

that is. There are those I have considered my friends

in the past and they have proven me wrong. My true

friends are my sisters...manly because they are my

sisters, but also as we have grown older they have

became my BEST FRIENDS, but I have one person from

high school (I'm 32 now) that has actually stayed my

FRIEND. I wish you the best with this band and the

group of people there. Just remember, You are not

stupid, you are suffering and if they can not

understand that then they are not your friends. And

that is really hard to face at times and hard to deal

with. If you ever need to talk, feel free to email me.

a Faye

__________________________________________________

[Guest guest]

Hello Annie,

I don't think your post is off-topic at all. I think many of us go through

the same thing, dealing with people who don't understand...it goes along with

the illness. So vent all you want. I know I need to sometimes and hope others

won't mind when I do.

So far the only person I've had difficulty with in my life is my father. He's

always saying things like, " you're just being lazy. It's all in your head.

You've become a wimp. Maybe you should get your head checked. " My mother

is going through menopause and he tells her that is in her head. It's really

frustrating. His knee swelled up and they drained fluid... doesn't know the

exact cause but it hurts him. I wanna tell him that's in his head.

I always worry work is going to begin to think I'm faking it. So far they

haven't.

I just have good days and bad days. You know what that's like. I know the

days when I'm not going to be able to function and I call in sick. I'm

anticipating

they'll get sick of it and let me go eventually...but so far they seem

understanding.

Many people really don't understand how you can appear fine one day and feel

like you're dying the next.

It is really frustrating. People just don't understand.

~Jen

Good Morning Everyone,

Hope everyone is having a pain-free day.

I was posting today to tell you my story and see what you all would

do. Ok, here it goes.

In my earlier posts I stated I have Lupus,FM,mild MS and suffer from

seizures. I currently work part time and I also have my own band.

The band does not work every weekend otherwise I would not be able to

do it. I have been so hurt and so frustrated by what I've been having

to put up with! There are two other girls in the band and two guys.

Well this past weekend (Labor Day Weekend) and for most of the week

prior, I was in a terrible flare and bedridden. Thank goodness we

were not working that weekend. The thing is I am so tired of everyone

telling me what I should and should not be doing. For some time, when

I was ill, I would not tell any of them because all they would do is

shoot me down and talk behind my back saying I'm not taking care of

myself or " I'm milking it or faking it! " then after awhile they

started to wonder what was happening. I explained how I felt at that

time and thought everything was resolved. So this time when I went

into the flare my husband told everyone. Well the same thing happened

again! Accusing me of not taking care of myself yada yada. I have

been ill for quite sometime and as you all know, you get used to what

your body tells you. And what you can and cannot do. There are other

things that go on too. I am a very easy going person who is too

sensitive for my own good sometimes. Therefore there are too many

chiefs and not enough indians always trying to tell me what to do. I

don't mind the advise at all, it's the way it's proposed to me. Like

I'm stupid! I'm so sorry for venting but I have been so stressed out

about this for quite awhile now. I love to sing and have for 30 years

of my life. It's very theraputic for me and USUALLY helps with

stress. But lately it's not the case. I'm stressed out all the time

and it's no longer fun as it should be. I am strongly thinking of

going in a new direction and starting over. With all new people! The

think is It's going to be hard for me because well, I thought they

were my friends. Guess not. I hope this post will be ok. I know it's

off the topic of our illness but I posted because of the extreme

stress it has caused me which is contributing to the flares that's

happening. Thank you all so much for listening!

Hugs,

Annie