Nobody Understands except y'all here....

[AbdoAlien]

Hey all...just wanted to vent about the general public, even friends how they don't REALLY understand what I'm going through...from the pain, the gas/bloating, the constant D..the anxiety that happens when ya try to live a normal life...All my friends are great, but I know they are frustrated sometimes when I have to pin out on plans, but what do ya do? Ya make plans & then ya try to do them & ya feel sick. Nobody wants to be in public when you feel nauseous or when the D is bad...and I absolutely hate it when people say "oh you look great" when I feel like an alien is going to protrude out of my abdomen at any minute...any one else feel this way?
:voodoo:

 

[glum chump]

Yes, yes, and yes! I always feel like a party pooper (pardon the unintended pun!) because I can't do certain things or have to back out of plans at the last minute. Or if I'm invited to someone's home, that I have a lot of anxiety about being a 'good' guest while not being able to eat a lot of what they make. And while many of my friends work and make decent incomes, I don't because I'm on a very limited budget, so I can't always do the stuff they do. I wish sometimes that friends would realize that I'm just as disappointed as they are.

Over the years, I've lost a lot of friends. Invitations to go out come far less often. For many, I became "too much of a hassle" or "not as interesting." I only have a couple of good friends left and I so appreciate what they add to my life. I hope I enrich theirs in some way as well.

I also wish that people would understand that the reciprocity in friendship can come in different forms. For example, I may not be able to help someone move, but I can make a pot of stew for them.

Yeah, Abdo, I get it.

And for the record, I'm *this* close to getting a button that says "I look smashing, but I feel smashed."

Gah.

Kismet

 

[AbdoAlien]

Thanks Glum...you made me smile..& I think I need one of those buttons too !..I have lost a few friends along the way, but the ones I do have are awesome, but I still have a hard time doing stuff & I can't do a lot of what I used to do, so I know ya on the "not as interesting" as well... maybe some day we all get a cure...be nice...wishful thinking eh? Thanks again..
Christie

 

[Daddy119]

I get it too. Even my wife questions my condition at times. "You look fine, you just don;t want to go." Well yes I do...I wish I had no issues. The part about planning is tough too. My wife says...will you be ok to go to so and so's house on Friday? I'm like I hope so...but how do I know. I could feel awesome or like curling up in bed with upset bowels. We still plan things and 90% of the time regardless of how I feel, I go thru with it but I have the same feelings Abdo. Feel nauseous, don't know what I can eat...I'm already thin and I am sure many people think look at him, he's not eating much, he must be anorexic (sorry for spelling) but I am not! Enough venting....I get it Abdo....things we have to deal with.

 

[Sunshine Cat]

Sometimes I worry about going out in public in case I have a leak from my ostomy. I would have to drop everything and either find a bathroom or go right home! Does anyone have that same problem?:redface:

 

[moogie]

At times it is difficult. Always making sure we have washrooms. Pain is always the ultimate ennemy. My GF too gave me a hard time when I started going out with her. we have to be patient with our friends and explain the situation. Even then some are always unsure. wondering if you are faking it.

 

[AbdoAlien]

Thxs guys! & Sunshine, I don't have an ostomy, but I have to peel pretty quick or don't make it some where due to lovely accidents...I am getting better, but still extremely frustrating & embarrassing!( & I waste alot of gas in my truck driving halfway somewhere & then turning around to go home..without even getting where I want to go!!!) & Daddy119...I always have to use the line "we'll have to see the day of..." to my husband, as well...he does pretty good at understanding cuz he was around when I started getting really sick & couldn't leave the house for 2 1/2 months!! But I still hate using the line & I sometimes feels he thinks I don't want to go, either...& moogie I hear ya on the GF status & others do wonder if your faking it...if only they lived in our shoes for one day, my how their views would quickly change!!!!

 

[braveheart]

I do agree. This f#cking disease is really funny.
None understands what you feel since you look normal. Then you have to explain in detail to make people understand it. And that is a very uncomfortable situation your you and the person that is listening to you.
I found this is not a fancy disease; this is a very embarrassing one. :mad2: It is not funny to talk about D, farting and that.

 

[summerday]

Nail. Head. I almost feel like emailing this thread to all my friends.....