Just need to vent for a minute.

Is anybody else being driven mad by people who constantly harrass you to do more, oblivious to the fact that you are doing a lot already?

I am not too strong at the moment, but I'm making an effort to go out and be with people several times a week. Some days I'm crying with pain and fatigue, but I still make myself leave the house if I possibly can. One person asked why I don't go out more, and *understood* when I explained: to go out is a huge sacrifice of energy, can only be accomplished when the gut allows me, and even on a good day is taxing enough that I need to spend the rest of that day and the next crashed out on the couch, so I need a lot of quiet recovery time between jaunts.

Everyone else - argh - gives a version of:

a. It's all a matter of attitude. If you tried hard enough, you'd be able to get out (would they be seeing me at all, if I didn't maintain a good attitude and get out of the house as often as I could?), or

b. There are people worse off than you (particularly aggravating, as I know that, and I wasn't even complaining about my life, just saying how happy I was to be able to get to this particular social event), or

c. So what if I go out x times a week? I should be doing y and z as well.


Normal people spend their days at home, watching tv, if they have a virus. Those of us who have a chronic illness get up, get dressed, cook, clean, exercise, work, go out, even on bad days. And the "normal" people dare to lecture us on attitude??!!

Argh.

Thanks. I just had to get that off my chest. Is anyone else being driven mad too?

Ivy.

I did!!!! They still didn't listen.

Yes, ever single day I wake up, there will be some inconsiderate person I have to deal with that thinks I should have a can of harden-up!
Im sorry you go through this too, generally it's the acquatience type people who are like this, I find family understand much more.
Try not to let it get you down Ivy, I know easy said than done.
(((HUGS)))
Jo

Oh, I love that, maybe we could have T-shirts printed with that on it!

Not to mention the fact that they wouldn't dare leave the house if they were doing bowel prep, but they criticise us for not leaving the house when we are going through that, and more, every day.

*And* normal people sit in hospital when they have done bowel prep, saying that it was "the worst day" of their life, and *still* we are not permitted to express a single negative thought when we go through that every day.

Vent vent vent.

I think one big thing that kept me from healing along the way was obligations to others. I don't know how old you are, but I'm at an age now where I'm having to let a lot of obligations go. It frees up a lot of space in my world, so I can be with myself and do what I need to do to bring healing into my own world. Self centered? Maybe so. But then, why half kill myself trying to oblige someone else's off the cuff remarks on what I should be doing? I don't do that too much anymore. I can't. It's way too stressful.

I look at it this way. It's easier to just say "NO" right off the bat. That way, if you change your mind you can always say "YES." But if you say "YES" first it's really hard to say "NO" afterwards. LOL!

People will go to the ER for a simple stomach ache and yet those very people will criticize us for wanting to tone things down every now and then. I can understand their perspective since many of us look normal, and it is hard for a human being to truly experience any other except for themselves. It's hard enough to experience ourselves even by looking in a mirror and thinking upon the reflection...all the same, there is such a thing as empathy. I wonder if people have forgotten about this?
I'm sorry anyone has to go through this Ivy...and I'm sorry that enough has happened to make you vent :( I guess some people will never understand. Part of me thinks they simply don't want to nor feel the need to..

Good Morning Ivy-I am new to this site & was so delighted to find it & you. I so understand where you are coming from.  I have had CD since 1971-2 resections,tried all of the sulfa's that made me sick, prednisone that makes me depressed & almost psychotic if my Dr. needs to use it for rescue therapy.  Rather than loosing wt. I have gained wt.  Had open heart surgery in 4/06, pacemaker 10/06, then double pneumonia in 11/06.  Also have the inflammatory arthritis & muscle aches with this lovely disease.

Today is my Remicade day, & if I could physically jump for anything, it would be to jump for joy because I will be getting my "liquid gold" that should help in about 1-2 days-at least until the next treatment, which is every 4 weeks.  I have begun to learn to REALLY love my home, and my computer, as I was put off work on SS disability in 4/06.  I keep in touch with a small few of my friends, by phone or online, but dont even want to go out.  Normal people want to get together to "do lunch".  You know how not looking forward to eating out that I feel.  The "do" part of eating out would probably end up in my Depends.  Nope, I would rather stay home & not deal with the stress of making nice, just to please other people's idea of what is best for me.  I have a loving partner who trys to understand, and he feels so helpless because as a man, he wants to fix it.  Some things are just no fixable.  It angers me that more research hasnt produced a cure, but heh, I will be 64 on Halloween.  I stopped believing in miracles a long time ago.  I enjoyed your venting and thank you for letting me vent also.  Hope we will communicate often

I wonder sometimes if I try too hard to be "normal" (whatever that is).  No one at my job knows that I have Crohn's, and as my disease is considered to be mild, it's a mixed blessing that I can appear to be just like everyone else.  But inside, I know that I'm not, and sometimes I wish I could talk to someone else about it.  My family and a few close friends are the only people who know that I have Crohn's.  This is not by accident; when I was diagnosed 12 years ago, the people where I was working treated me like I had the plague... they treated me differently and it bothered me.  I've worked at several other places since and have never told any co-worker or supervisor about my illness.  Articles that I've read on the topic of how to handle having an invisible chronic illness in the workplace seem to support the idea of keeping it a secret, but it makes me feel very lonely at times not to be able to talk to someone about it.

Ironically, one of my current co-workers also has Crohn's.  How do I know?  She talks about it frequently and is active in the CCFA.  She has made a purpose of getting the word out and trying to help others who have the disease.  She is a very positive, energetic person who has been through a lot of tough times in her life.  I admire the way that she is able to move through life with such a positive attitude, and other co-workers comment on it, too, all of them knowing about her illness.  Sometimes, I wish I could be like her, but somewhere along the way I made the conscious decision not to discuss my illness in the workplace, and I can't decide if that was a good idea or not.

Gail, I really appreciate your comments, and you are right about people not understanding what we have to do to get to work every day. I know all about those mornings when I wake up feeling nasty and know I'm going to have to get up earlier to deal with whatever is coming before I go to work... and it certainly does happen during remission as well.

I printed out "Spoon Theory "THEY didnt respond in any way and stil want me to do all

Cait n Howie are better though they see me everyday

I love the T shirt idea

Ivy
I do know what you are feeling and it is
definitely harder on us in the long run of course

YOU help so many out here
VENT away .........

That's a great idea, Fitzy. I was thinking earlier that maybe I could ask her to have lunch or something one day and we could talk about it outside of the office. It just might help to know that one person understands.

It just occurred to me that I should change my forum name here... I don't teach anymore! But I'm still a teacher at heart, so maybe I'll keep it. (-:

Totally!  My friends and family think I don't have the right doctors or I am missing some information and miracle cure.  I know they are trying to help when making suggestions, but really?  Do you think I have had this disease and not researched everything I can get my hands on to try and get better?  Unless you deal with it everyday, you just don't know how wearing it us.  I am impressed with all of you on here who have found a place to vent and get empathy instead if sympathy.  In many ways, this disease is worse than some others, because there is no cure, what works one time may not work the next, and some days you feel normal and then it can sneak up on you again for no reason.  You can only do what you can and get through each day.  I would not give anyone any more details than they need to know if it is aggravating you. 

What is the spoon theory?  Where do I find that and laminate it??? HA!HA!