Re: what i like about this group

March 20, 2010

A lot of us have the same issues, especially families that don't believe us. My

son has refused to believe for years that I cannot babysit his three sons, two

of whom are not yet school age. After all, I do not work because of disabilities

so I am home. My dil gets very angry at me about this, which upsets the

children a lot.

I have to do what is right for me and just hope that someday they will become

more mature and understand and care. If they don't, well, I can't make them.

I've learned, maybe still am learning, to be more gentle with myself and accept

that I have to do things in stages. I have to get ready for Passover, which

means a lot of cleaning and separating of foods that I can't eat then. I am

doing it a bit at a time. Today I checked to find what I still have from

previous years and moved some cereal boxes. That's all. Every day a little

more.

Glad to have you with us.

Barbara S

>

> one of the things which has been of great help to me is hearing others

with this same problem, because most people won/t beleave you and look at you

funny if you mention it, so it can be rough and lonely. and my own family dosn/t

really beleave ,which did kinda piss me off but i know i was expecting too much

from them, if i didn/t have this myself , i wouldn/t probably beleave it either.

i can be tough on myself to , as i will push myself as much as i can and i

refuse to slack off. but i have to know my limits too i won't talk on the phone

much at all as that is a drain to me, sore throats will come if i talk my then

10 minutes, but thats better then it used to be when i could only talk for 5 at

a time, thanks for letting me vent, take care all

> Rich...

>

March 20, 2010

I have to agree that one of the important functions of the group is to validate

each other. It is so wonderful when someone else is able to write out exactly

what we are feeling and/or experiencing. I seem to remember somewhere in my

very distant past not always understanding when others were ill but time and

CFIDS/Lyme have cured me of any inclination to think anyone is " not really

sick. " Before illness I thought it was all mind over matter. I sure got

humbled and taught a lesson!

My best to all of you,

Jeanette Flowers

Its awesome to finallyhave people that understand you. I remember when I

first found support groups and I felt validated and not crazy!

March 21, 2010

Yes, many of us have had to deal with families that don't believe us and they

have no idea how deeply it hurts us. When you feel unfairly judged and in such

a way that you feel your basic character is being attacked, you feel invalidated

and disrespected. It also makes you feel like the other person feels that you

have little worth. The thing that I try to keep in mind is that there are many

people who feel this way, not just those of us with these types of illnesses.

We human beings are quick to judge others harshly when we don't know all of the

facts and we frequently base our judgments on our circumstances when the person

we are judging may be dealing with factors we know nothing about and can't even

imagine. We also toss off judgments right and left without pausing to think

about how those judgments affect the person we're judging (like the nurse or

receptionist that dissed you last week!). We think that if we don't say

anything out loud, it doesn't matter. But when you have been on the receiving

end like we have, you know that such judgments are often expressed in the facial

expression, general attitude, tone and many other ways. I have tried to train

myself not to be so judgmental, basically to avoid judgment unless another

person's behavior or choices have an impact on my own life ( " live and let live " )

and to try to keep in mind how little I know about the person and their

circumstances. I've tried to look for situations where before I would think

" that person shouldn't do it that way " and change the judgment to curiosity,

asking myself " now why would that person do it that way? " I've had some great

conversations and learned some interesting things as a result. I also try to

remember how little I matter to most of the world lol. We tend to think we're

the center of the universe without realizing it. The clerk at the store is

cranky and short and we feel like we're being insulted when the clerk's feet are

killing her from being on her feet for 10 hours and she knows she has to take

her kid to a birthday party when she finally gets off work. So " don't take it

personally " is another mantra I try to keep in mind. Mostly I just try to avoid

the negative. I don't want to hurt other people the way I have been hurt.

Margie

> >

> > one of the things which has been of great help to me is hearing others