Vent away! You will be heard! You will be understood, and you will be validated!!

I SO HEAR YOU!!!!

YOU choose those things that are crash worthy and you do um!! For Pete's sake, what little life we have, WE need to be in charge of.

It is a good thing that you have people that do care about you, and voice it....it shows they care. Lots of folks don't have that. So, try to just see their comments as caring.....no matter how crazy nutz it may make you!!

But again, I SO HEAR YOU!!

I'm right there too. We can't control our diseases, but we can decide what we believe we can do each day. No, we don't need any reminders, been there done that. Feel free to vent Genie.

Yep--vent away and cry too if you want!!!!

I too get tired of doing only what I can to survive another day to work. It is hard to deal with your own shortcomings and limitations of the disease. Then to be reminded time and again by others that you shouldn't really even do your own dishes and the reward for not is being able to keep showing up to a place that you succeed in disappointing everyone time and again because of CFS.... I miss living.. and I miss community.. and I miss being able to make friends and investing in others because I wasn't so consumed with surviving within my limitations.... I'd be happy to be fired so that I could choose to spend my energy in healthy ways for me like being a friend and having friends or cooking so that I can eat better or crafts because they make me happy or even being able to make it to church once in the week. I am scared of the possibility because of my husband and I needing insurance and needing to be able to make ends meet... what a complicated and less promising world than when I was young and believed that I could do anything if I just applied myself.

And...had to add, don't ya love it when they say, But you don't look sick, or, you know not to overdue it, cause you will hurt and be in bed all day. I believe, living alone, that last one, comes usually from my daughter, who actually don't want to have to take care of me, which she don't but makes me wonder!

seems to me that if you're sick, you become fair game - have you tried this or that 'cure', are you resting enough, are you exercising enough, is your diet completely perfect... you just become public property.
And I agree people say this stuff because they care.... about themselves. They are uncomfortable with our inabilities and differences to them, and really just want us to conform to something they can understand so they don't feel challenged.
I've started to say "well, if YOU find it inconvenient, tedious, unwelcome, boring, frustrating, and just a drag, imagine how *I* feel about it!"

I've heard it compared to living in a glass house where you can't see where the walls are...so you keep painfully slamming into them all the time. The only way to avoid doing that is to sit around like a vegetable all day.

I can't sit still like that...for one thing I wouldn't have anything to eat, since I live alone.

I'm with you, sometimes I just get so very tired of it all.

Thank you all! I knew you would understand and I just needed at least one person to GET IT!

I value each and every one of your comments.

Fishwish....that was beautifully stated. I never thought of it from that perspective before but you are so right. I see now that some people in my life honestly care about ME and some people in my life try to control what I do so that they don't have to be inconvenienced by my "unreliability". Thanks for that eye-opener.

Thank you my friends! Genie

AMEN!!! i feel u on that

Genie,

This is the place to feel safe about opening up and venting and I do understand your frustrations. But your real frustration is with this illness/syndrome, not your family. Their remarks are just pushing the buttons that CFS have already put there.

I also agree with a poster from above who wrote you are very lucky you have people who care about you as not all of us do. I just read the thread about being alone on the holidays and feeling lonely in general on here.

So, I guess I see both sides to it. I would LOVE some family or friends to call me regularly to say "hello" or see how I am doing! But, this is the place to vent and let it out because people with CFS, Fibro and other maladies need places to express themselves and have people in exact or similiar situations understand them.

Lostandinpain,

I also read those other posts about not having anyone, and yes, it made me just so sad for them that I couldn't even comment. Also, it made me feel ungrateful. I guess it's easier to complain about how people treat me because it is something that could be changed, and nothing about this illness can be changed.

And, I fear that people have stopped looking at... and seeing...ME, and only see the illness. No one ever just says good-bye at the end of a conversation, there's always a stern reminder of what I must do or not do.

Thank you for your thoughts, I do appreciate everything you said.

Genie

Genie,

Well, the last thing I want to do on here is play the antagonist, be critical or be unsympathetic. People are not here for those things. Did not mean to be insensitive.

When u wrote that at the end of a phone conversation, "there is always a stern reminder of what I must do or not do" that made it more specific and understandable. That would get to me after a while, also. Would not like that, either. So, based on that comment, U do have my sympathy.

I also understand completely how U may feel "less than" or that others see you as just some illness and not a person with feelings, talents and interests and treat U like a fragile China Doll instead. We all want to feel equal.

Like I already wrote, I can understand those of us who rarely get calls or do not get any calls being a little jealous of those who do and not see the negatives that may come with them. I admit I had one friend stay in touch with me for many years and I blew him off because of different reasons and still feel bad about it but could not take it anymore (long story). So, I guess I understand. Maybe when people like me are so lonely, we over-idealize what it would be like to have friends and family call regularly but the reality might be very different than we want or expect. Oh, and I learned long ago, we may not be able to change some illnesses but we also cannot change people either. :)

Anyway, I just hope you and everyone on here start feeling better, find all the friends they need, reconect with some family and we all become happier people.

lostandinpain,

I did not feel in any way that you were being critical or unsympathetic. You merely presented another perspective, and it's an important one that should never be overlooked.

"The grass is always greener on the other side of the fence"

We all at some time or another look at our situation and look at others and the other looks more appealing. Those of us who are crowded with well meaning people sometimes just want to be left alone. Those of us who have no one in our lives want more than anything to have people to care for them and crowd them. There's no perfect balance.

I have always been a "glass is half full" person, always aware that no matter how bad I may have it at any given time, there's always someone out there that has it worse.

You are very right about one thing, it's really the illness I'm frustrated with. The illness is what has created all these situations that frustrate me.

Trust me, I am truly grateful for the people in my life, but since no one of us is perfect, we all tend to get on each others nerves a bit.

So instead of just whining and venting I decided to be more pro-active, I wrote to 2 of my closest friends and very kindly explainded my frustrations....emphasizing that I knew how much their worry is due to how much they care. I even joked about other possible things that could be said at the end of our communication. One (Karen), expressed to me that she now understood me better, and that she would try to cut down on those warnings....but admitted she would be thinking it. The other (Bob), was more insistant that he only means well but he gets why I get tired of hearing it.

So I guess there is a more productive way to deal with frustration than just venting. My friend Bob now ends his emails with "may the force be with you".

Thank you lostinpain, for helping me to see this from another perspective.

And.....may the force be with you.
Genie

Genie,

Thanks for getting back to me and all your nice thoughts. Seems U have at least two good, understanding and well meaning friends.

I would think "let the force be with you" beats the heck out of "now do NOT do this or that"!

Whenever I start going on about other things in my life bothering me (lost my house recently and now live in an apt, drive older car, lack of friends, etc.) I remind myself how much happier I would be, how much higher my self-esteem would be, how much more confident I would be and how I would function at such a higher level if I was healthier and that is my real issue. Easy to forget, though.

In any event, you seem like a very nice, thoughtful and sincere person and I am glad I was able to meet you.

Thanks again and best wishes to you and your family.

I hear you vent all you need that why we are here for each other kathyjo