The one closest to me doesn't get the Exhaustion part

[songbird7]

The person closest to me just doesn't get it when I get exhausted from IC. And instead feels insulted that I don't bring tea at night like I often do. It is kind of depressing to me.

[Em]

Hi Songbird7

You are absolutely correct tht the person or should we expand it to say that the persons closest us don't understand. I suppose that if we were different in appearance they might understand, (forget the biting of your lip to keep from screaming in pain, that does not count)
It is so difficult for role reversal to occur. You were probably the nurturer in the family and the expectation is that you will get over IC and related condiitions just like the flu!! If I could figure out how to impress upon my spouse and other family members that a lot of days all I can manage to do is shower and brush my teeth.
The amateur MD's in the family are possibly the worst because they always know of someone who had similar symptoms and willed themselves to move in spite of the pain level . After so many years of willing oneself to move , the gas tank is empty.

My advice is to take care of yourself and become selfish in how you use your time and distance yourself from any negative people in your life.
I now tell people to check me out in 6 months as my methiod of dealing with my inability to particpate in so many things I once enjoyed, and if at the end of the 6 months things have not changed, then it will be another 6 months....

HOPOE THINGS WILL IMPROVE FOR YOU AT SOME POINT!
[img]cool.gif[/img]

[septangel68]

hey, i have been diagnosed with ic since 1991. like you i have found that the one closest to me just doesn't get it. it has caused alot of problems for me and my marriage. so much so we are now talking divorce. he just doesn't get it. he is military and believes it is all a mind set. i haven't worked in over 10 years because of this, and now i have been given the ultimatum work or else. it is so hard because he sees it as me being lazy and not doing things because i just plain out don't want to. how do you get someone to understand this disease. sometimes i just wish he had it to so he would understand, but i really don't wish it on my worst enemy and certanly not him. seems like not understanding would change after all these years, but he still doesn't understand why when i get the kids off to school and him off to work all i can do is go back to bed because i am in pain and didn't sleep well the night before. nothing gets done till way afternoon around here. he just doesn't get it. i hope things get better for you. i have given up on even telling him i am feeling bad because that just seems to start the attitude and the preaching on how he has to get up and go even though he doesn't feel good.. the good old college try,lol. don't feel alone though there are alot of us who do understand. you can email me at [email protected] if you would like. i'd be glad to be your friend. i will keep you in my prayers.

[songbird7]

Thanks everyone for your help and your stories. I pray things get better for us and that the people closest to us understand at last.
"Faith precedes the Miracle"

[cherish]

thats what I do I just distance myself from hose who won't/don't understand. I don't disrespect them or anything I just don't talk about it with them and when I can't do something I just simply say no thanks [img]smile.gif[/img] and move on..

With people who HAVE to understand (or else) I simply say that it is more than important for them to just TRY to understadn and just listen don't lecture. I tell them when you are dissapointed in me.. I am already dissapointed in myself nad that doubles it. It makes mefeel helpless and useless and there's honestly nothing I can do about it. I see my bf wanting to go to the movies and honestly I CANT drive that far and it was for a movie i really wanted to see nad been waiting 10 YEARS to see... but his feelings were hurt cuz he was bored ect. nad wanted me to dot higns with him... but I just felt wore than i already felt.. Itold him this nad he told me he didnt mean it like that and he just wanted to spend time with me nad he was sorry.. I am pretty lucky to have him be so understnding (course he could help me out a bit more).. even my mom goes to IC meetings for me cuz I am outside of the city nad she tends me all their literature.. and she doesn't understand it either but she's hell bent on learning [img]smile.gif[/img]

[littlebit]

I have 3 children ages 11,13&17.My kids couldnt make a bed if thier lives depended on it.I constantly have to remind my oldest child to take out the trash,and put the clean clothes in the closets.(GOD FORBID)the child would cut the lawn without a fight.My middle child is responsable for the dishes not a unreasonable choir for a 13 year old.and my youngest has to put her dirty clothes in the hamper(yea right) she has ants big enough to carry me away in her room.I get so frustrated because everything seems to be a argument.so yes I do it all on top of having a full time job.(even the lawn)The more I ask for help the less I get.there's been days I'v cut the lawn and in the middle of it doubled over in pain.do you think anyone would finish cutting it..noooo sometimes it will stay half cut for a week at a time.until I get the courage and strenght to finish it. [img]mad.gif[/img] My husband has the nurve to say I'M A NEAT FREAK.that's not the case at all.I know if I dont do housework it wouldnt get done.I tryed a little experiment I didnt wash sheets for 3months I kid you not.I told the kids 3months prior if they wanted thier bedding washed they would have to strip thier beds and leave it in the laundry room.did they nooo.this morning ever dish and cup we own is in the sink.I made it clear this a.m I REFUSE to wash them..husbands response was I guess were eating out tonite.instead of offering to do dishes or demanding my son do them.My marriage has been falling apart for a few years,because of"LACK OF SEX" acording to him I'm a cold hearted,cruel,selfish,bxxxxh.I never want to do anything and all I care about is cleaning house..yesss every womens fantasy is cleaning house.The day of my d&C my youngest came home and informed me I had to make cookies for a party at school.so I did.3hrs post-op.no thank you mom or anything.The first day home( 24hrs)after having a hysterectomy.barely able to walk I was washing clothes because no one else had.the day after my cysto my husband was stomping around the house like a 2year old because I hadnt cooked dinner. [img]mad.gif[/img] I firmly believe I have the family from hell.I love them to death but I'm ready to run away.my youngest child has adhd,and my middle child is a cronic asthmatic to top it all off.My husband and I went to marriage counceling 3x he said we dont have a prob in our marriage.he had a internet affair,looks at porn on line,and dosent help with the kids or house.He says its my fault for the affair and porn because I wont give him sex.forget the fact when I dont have flare ups from ic I have to spend my"well time" which isn't often.. cleaning house.I could just sCream!!!!The worst part is I have no support.I don't socialize outside of worK,have no family I keep in touch with,I feel like I have a life sentence of cruelty.dose anyone else feel this way?

[Teri]

I survived my two teenagers (or should I say they survived [img]wink.gif[/img] ) I kept their bedroom doors closed. I STOPPED doing any of their laundry. If I came home from work and the dishs weren't done, I would throw them into their bedrooms so I wouldn't have to look at them. Yes, after my son had bugs living under his bed, he did get the message and got a little better. My daughter never did and there were no tears shed when she moved out at a very early age. Since I was a single Mom, I had to pick my battles and I knew that them living like pigs was a battle I was NOT going to win. It wasn't a reflection on me if they wore dirty or wrinkled clothing, it was a reflection on THEM.....took me a long time to figure that out and make peace with it but I did.
Tuff love HURTS but sometimes it's the only thing we have. Wish I could say something positive about your hubby's attitude........

tons of hugs~

p.s. today, as adults, both of my kids live in spotless homes [img]biggrin.gif[/img]

[Kate_24]

Hi
I know how you all feel about that. When the nurse at my uro's diagnosed me, I tried to tell my mom what I had and she didn't believe me at all untill I had surgery done. Once the pictures came out revealing that my bladder was very red she started to come around. He also had to scrape my bladder too.
As for my husband he has been very suporitive and has believed me from day one about it. If it wasn't for him I don't know what I would have done since my mom is the second closest person. She kept telling me that I didn't have it. It made me so mad but, I'm glad that she finally came around.
I hope that all of your family will come around as well. It may take time but maybe they will come to understand.
Take Care.