Overwhelmed - how to cope?

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minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 1/23/2010 8:16 PM (GMT -7)   
I don't know why this is so difficult to put into words. I tried talking to my Mom about it today but gave up halfway because (a) I couldn't get my feelings into words and (2) I had to run to the bathroom. I feel like I'm leading a double life. In one life I have a career, a husband, family and a social life. In the other life I have Crohn's. But because I'm one person these lives have to exist together. So when I go to work the Crohn's comes with me. When I spend time with my husband, family or friends, Crohn's is always there. Like a ball and chain. I'm doing the best I can but it doesn't feel good enough. I want to be present in my life and right now I'm just existing.

Part of me thinks I should leave my job for a while and concentrate on getting better. Or take it down to part time. The other part of me says to buck up and stop being such a wuss. I have an appointment with my GI Monday. I asked my husband to come with me and when he asked me why... I couldn't give him an answer. I feel like I need support, but I don't even know exactly what for. I'm so confused.

You guys have always been a great support so I thought I'd stop in for another visit. Just to get my thoughts out. Maybe it will help me decide what to do with myself or maybe some of you are going through the same thing. Either way, thanks.

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 1/23/2010 8:44 PM (GMT -7)   
I go thru what you explained everyday, my work I have what is called, an ongoing medical, meaning I can call in sick up to 6 times per month without being fired. I'm a table games dealer at large casino and I have an art business that makes the money I loose from calling in sick. my dealing job give my family and I insurance. I've had crohns since 1970 4 surgeries and 2 resections

artist guy


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/23/2010 8:51 PM (GMT -7)   
JMHO, but no one (especially health care workers)really talks about the psycho-social effects of this DD. BTW, I TOTALLY get where you are coming from. This disease is quite hard to talk about espicially because of societal taboos about body functions, especially excrement. So it can be hard to tell people what the disease is like because of this, and heck, I have those taboos. At one point I thought God MUST be punishing me, to give me this disease...(I'm more on the lines of Elliott in Scrubs TV show).
One thing that I used with my family to help them is the "Spoon Theory". It puts things in ways that are easier to understand. I will leave the link
www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
I think because much of our symptoms are away where people can't see them, and we try to hide them too, but we must not be that sick. And there are the silent parts of the disease, like fatigue, to others seems like laziness...but it is not...again, the spoon theory should help.
"The earth laughs in flowers"


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 1/23/2010 9:17 PM (GMT -7)   
Minou, I think lots of people go through this, I know I definitely do - some days I want to leave my job or change careers or do SOMETHING different, and I still can't tell if that's something I should be considering or if it would just be easier to start over someplace else.  No matter what decisions you make, take extra "me" time.  No matter what.  Take a weekend retreat, stay in bed for a movie day if you are feeling like you need more rest, start a journal and write down your feelings - these are all things to help keep your head focused so you don't become overwhelmed by your emotions.  I know I definitely become overwhelmed with my emotions and am trying not to make decisions based primarily on them.  Crohn's is a lot to take!  If you have trouble expressing yourself to your husnad & family then write down what you would want to say and maybe don't give it to them - just keep it for yourself so you can get your thoughts straight. 
 
Good luck!  Hang in there!!!! :)
32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9 and Vitamin D
 
 


minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 1/24/2010 12:22 PM (GMT -7)   
Thank you so much for your comments. My head is much clearer today. Much, much clearer.

@artist guy - 6 sick days a month is very generous, good for you! I get 10 per year, although I don't really use them. I'm lucky that I can work from home when my symptoms get difficult to deal with. But because I'm up and down through out the day I just try to deal with it as it comes.

@ undone - thanks so much for the story. I never thought about it that way. It is a big deal just to get out of bed in the morning. I do dress according to how I feel. Now maybe I won't feel so bad about taking over an hour to get ready in the morning. And the punishment thoughts... I have them too.

@ wednesday - Me too! Sometimes I think if I could just get away and start over in another town, maybe live by the ocean (so calming)... things would be ok. The career I have is a good one, but I also feel something isn't right. Is it the Crohn's or is it me? Still haven't figured that one out. I went out yesterday and had my hair dyed this crazy colour, to symbolize a new me! A me that takes control. We'll see....

Thanks again. I don't know what I'd do without this board.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/24/2010 7:59 PM (GMT -7)   
You Said,{ I want to be present in my life and right now I'm just existing}. Boy do I understand that statement! I tried work and being sick for alot of years, finally I went onto disability but always wanted to get back to work. So when I felt a little better, off  to work I'd go and get sick again. This last time 2 weeks after I went on disability my plant shut down permanently, so I sayed on disability, It's been 14 months now and just lately 1-.5 months I've been feeling the best I have in over 6 years! I think just having the pressure off and  steady mealtimes and sleeptimes seems to have made a huge difference in my health. I can closely monitor how I'm doing and how different drug therapy's are working. I know eventually I'll have to go back to work, the money can't last forever but I'll find a job that allows me stability in my lifestyle, now that I realize just how important it is. If your able to go off work and get your health back I'd recommend you try, possibly like me it'll be a God send for you. Rob


Male with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003.Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control.5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 1/25/2010 4:06 PM (GMT -7)   
Thank you Minou for your honesty in dealing with this.  I hope things even out for you. 
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
No meds yet, Garden of Life supplements


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/25/2010 5:00 PM (GMT -7)   
I am not sure how much more incouragement I can offer, but I will try with the Husband thing...

Jesse and I have been together for 10+ years and are "practically" married. When I was so sick before being diagnosed, 3+years he saw me being "lazy", not going out with friends and a day at the beach....i would try anything tho get out of. Work was also a struggle, as I work at a very busy dr's office, everyone saw me as anti-social.
After my dx and starting treatments, symptoms settling, and new symptoms popping up seemingly out of nowhere, I have started telling my mom, jesse, and my two best friends some of the things that I have a hard time dealing with on my own. We have since started calling them "pitty parties" cause I just need to get some things off my chest. I am not looking for anyone to solve the problems, or concernse, just to listen. My mom has gotten really good at helping me B#@$& and get everything out. My two best friends know that there "duties" at the parties are to help me find some humor in any given situation. Jesse is of course the shoulder that is closest and strongest. As for guys they tend to want to fix things and they can't fix this, but you need to express things that are bothering you, you are worried about, or just venting. I have found with Jesse that telling him I Just need to vent, let him know why am scared has help alot in his understanding of CD, he now helps watching my food and remembering to take my meds on busy days...
I hope that you are able find the right mix of support with in your group at home, but if not you are always welcome here!
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj


kia c.
Regular Member


Date Joined Jun 2004
Total Posts : 111
   Posted 1/26/2010 7:07 AM (GMT -7)   
I have nothing really more to add than what's already been said ... just that I know exactly how you feel. 
 
I work in a close environment with several other people ... they all know I deal with the Crohns disease ... as I'm pretty open about it ... yet, when I've been in the bathroom a dozen times during the day, they'll say, "I didn't kinow you were so sick today ... you didn't say anything."  Yet when I go home, if my husband is going on about his crappy day ... I feel like all I talk about is the darn Crohns.
 
As for your husband going to doctor's appointments with you ... be honest.  Tell him you just want a little support.  My husband's gone to my last three appointments with me.  I've told him, when I finally agree to Humira, I want him there to hold my hand.  (Some times, too, I get a little freaked out going grocery shopping ... and I'll ask my husband to go with me.  He'll pout and ask why ... I just tell him I'm a little unsure of things and need a friendly face near me.)
 
Hang in there ...
 
kia

fongers06
Regular Member


Date Joined Jul 2008
Total Posts : 82
   Posted 1/26/2010 8:18 AM (GMT -7)   
Dear Minou,

I was laying in bed last night - feeling miserable and I came across your post. I just laid their and cried. I guess I felt your pain. I am sorry you are having a rough time. Hang in there. Even though most days it feels like it you are not alone. You don't have to have a reason to tell your husband. Just tell him that you need him there. It is scary to go sometimes by yourself. Other times I know that my husband thinks of things that I don't while we are there. Some days I cry and feel sorry for myself and other days I laugh about it because my kids are laughing at me as I make a mad dash to the bathroom. Hang in there. Here is something to think about. A co-worker of mine's father was diagnosed with stage 3 throat cancer. He had his first chemo session yesterday. He went with his dad and while he was there a guy walked in early in the morning smiling and whistling. When someone asked him if he was a morning person, he said, "No - but I have cancer and God let me wake up this morning. He didn't have to do it." It doesn't make how you are feeling any better or your troubles go away, but when he told me that this morning, it just made me stop and appreciate what I do have. I am thankful to have such a great family that helps me through this the best that they can.

I hope you have a good day.
Diagnosed with Crohns in May 08
Resection in November 08
Currently on Humira, Entocort, Xifaxan, Zoloft, Ritilan SR, B12 injections, Calcium and Vitamin D
Married, mother of 4


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/26/2010 8:42 AM (GMT -7)   
Minou I think most of us feel much the same as you. I know at least I do. I have an amazing and supportive husband, I have a great job, but I too am so tired of always smiling and pushing myself to do what is "expected" of me. And I am in remission!! I have had this darn disease for almost 35 years and to tell you the truth I am tired of being the strong one. I am tired of pushing thru, I am tired of the living with the joint pain daily, I am tired...But then I think I am not as sick as.......I should feel lucky that I am in better health than.....but, you know what, I still don't feel good either. So sweetie, I just want you to know that you aren't alone in how you feel. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 1/26/2010 6:07 PM (GMT -7)   
I am self employed and working part time, and it has been a godsend. Every once in awhile I feel guilty about not working more hours, because we certainly could use the money, and my hubby reminds me about how important it is to take care of myself. If you have the option to work part time, then go for it; if not, then make sure you take time for yourself.
51 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 1/28/2010 5:22 PM (GMT -7)   
I'm blown away. Thank you so much for your support! It's been a rough few days but your messages have helped me a lot. You each made some great points, so I wanted reply personally. I wish you all great health and hang in there!!!

@ Grandpato2: I agree, I think lifestyle plays a great role in managing Crohn's. It's establishing a routine, getting enough sleep, eating properly, exercising. I'm definitely rethinking the job situation.

@ newfoundsun: Thank you.

@ Jesse's_girl: My friends and co-workers get the impression I'm anti-social/boring too sometimes. I think that's one of the hardest walls to break down. My husband... like you said, guys like to fix things, but this he can't fix.

@ kia c.: Friendly face... I know what you mean. I went to the emergency room a alone a couple of months ago for an abscess. I told him to stay behind, that there was nothing he could do to help me. Well... once in the operating room I regretted my decision. At that moment, there was a knock at the door, and who walks in? My husband. My superhero : ) See, you can find romance in Crohn's lol

@ fongers06: Well, now you've made me cry ; ) It's all about perspective isn't it? There are people in my life who have it much worse than I do and yet they still manage a smile. These are incredible people. I like what you said about having someone else at my appointments for things I might not think of. Never thought of it that way.

@ Nanners: Yes! That's exactly how I feel. You nailed it.

@ gumby: I've got an appointment tomorrow, going to find out what's going on. Then I'm going to rethink the job.
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