Just need to vent for a minute.

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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/27/2008 5:13 PM (GMT -7)   
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. mad
Co-Moderator Crohn's Forum.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/27/2008 5:22 PM (GMT -7)   
Give them the spoon theory Ivy!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/27/2008 5:33 PM (GMT -7)   
I did!!!! They still didn't listen.
Co-Moderator Crohn's Forum.


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 10/27/2008 5:33 PM (GMT -7)   
Ivy, I could have typed that post myself!  There are so many days that I feel exactly the same way. mad   Feel free to vent all you want! wink    Blessings, Julie
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/27/2008 5:37 PM (GMT -7)   
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

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/27/2008 5:41 PM (GMT -7)   
I'm starting to feel like I should wear a sign on my back:

"I have multiple autoimmune conditions. Please feel free to judge me. After all, you know you could live my life much better than I do."
Co-Moderator Crohn's Forum.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/27/2008 5:42 PM (GMT -7)   
Oh, I love that, maybe we could have T-shirts printed with that on it!

TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 10/27/2008 6:07 PM (GMT -7)   
Great observation, Ivy... makes me think of all the days when I've gone to work feeling icky and listened to healthy co-workers gripe about having to be there, or worse, call in "sick" just to get a day off.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/27/2008 6:09 PM (GMT -7)   
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.
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/27/2008 6:09 PM (GMT -7)   
Hi, Betsy. It's nice to see you here!
Co-Moderator Crohn's Forum.


Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 10/27/2008 6:16 PM (GMT -7)   
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!
.....Squattie


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 10/27/2008 6:35 PM (GMT -7)   
I like the comparison to bowel prep. I may try that out, but it will only work on healthy people over 50 who've experienced it.
Currently in remission!


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 10/27/2008 7:20 PM (GMT -7)   
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..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/27/2008 7:46 PM (GMT -7)   
I love how free people can be with their advice. My DIL puts it like this . . . "I love how people think they have the right to comment on the name we have chosen for our baby (insert your pet gripe here) but that same person would allow you to walk around with a booger in your nose and not find themselves capable of pulling you aside to tell you that you need a tissue!!"


I love it!!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cathapy
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/28/2008 1:33 AM (GMT -7)   
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

eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 10/28/2008 5:43 AM (GMT -7)   
i swear that some of the people i knw think im making things up,think if ne1 told me to harden up i wld say ive pulled out a tube that was dwn my nose and in my stomach,leave me da f#!#% alone.Like i always say ppl dont believe you are sick until u puke on them,even had a nurse told me it was in my head...even thou i was puking tons of green stuff??? and she was a nurse......
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 10/28/2008 5:57 AM (GMT -7)   
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.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/28/2008 7:31 AM (GMT -7)   
I have had this DD for so long I pretty much have learned to ignore those idiots. It was hard, but now I know what I can do and what I can't do. If others don't like it, they can kiss my sweet sore butt:) Ivy don't let them get to you. You know you are ill and can only do so much. Just continue to do what you are able.

Some people are just so ignorant they will never get it. I wish we had the capabilities to let others feel what we do for just one day, then lets hear what that have to say.

My Crohns is in remission right now, but every day I wake up nauseaous and have cramps for the first hour I am up. Once my meds kick in I am good to go again. But before then, I am feeling pretty crappy. No one at work has any clue that I have to get up really early everyday (3 am), just to make it to work on time. Sometimes like this morning I am up about an hour before my alarm because my body has decided it must use the BR and won't quiet down until the meds kick in. No one sees this, they just see happy me at work, not knowing that I go thru pure hell first to just get here.

So as I said before, do what you can, and let the ignorant just stay ignorant.

Hugs,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 10/28/2008 7:48 AM (GMT -7)   
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.

mj8dokken
Regular Member


Date Joined Dec 2006
Total Posts : 149
   Posted 10/28/2008 8:12 AM (GMT -7)   
Everytime I have to call in sick one of my coworkers decides to drive by my house and make up lies about what I'm doing (i.e. sunbathing on my balcony-with the spiders out there? No thanks!) She also told everyone she saw my bf loading camping equipment into my car when I was out getting my abscess drained. Because camping would obviously be really fun the day after having an abscess lanced. Argh! This is the same coworker who told me that she was doing a colon cleanse and I should try it too because it's good for your body. No thanks!
Bad flare May '06 resulted in CD diagnosis
 
Asacol: 2400 mg/day; Prednisone: 1.25 mg/day; Entocort: 9mg/day; Metronidazol
Started seeing a Naturopath-Castor Oil Packs, Liquid B Complex, Floragen, Ribes Nigrum, Herbal GI, Chlorella
 
"Life isn't about how to survive the storm, but how to dance in the rain"


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/28/2008 8:20 AM (GMT -7)   
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 .........


  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
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FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/28/2008 8:37 AM (GMT -7)   
Teacher - why don't you just tell that one coworker so you have someone to lean on at work without everyone knowing. Tell her you don't want anyone else to know at this point.

It is a very personal decision but I am more like your coworker and tell everyone. I have never experienced any backlash.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 10/28/2008 8:48 AM (GMT -7)   
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. (-:

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/28/2008 10:22 AM (GMT -7)   
(((((((((((((((((((((((((((IVY)))))))))))))))))))))))))))))))
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


jill in ca
New Member


Date Joined Oct 2008
Total Posts : 19
   Posted 10/28/2008 12:17 PM (GMT -7)   

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!

 

turn
Diagnosed with CD in 2004.  Currently taking Pentasa, Entocort, probiotics, fish oil, ultra inflamx powder.  Dairy and wheat free diet.  Only struggling now with fevers, everyday!

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