hard to live with

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littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 5/5/2009 10:44 AM (GMT -7)   
Hi
 
I just feel like I have to vent my hurt somewhere.  My partner of 4 years told me yesterday that he has found my illness quite hard to deal with at times because it puts such restrictions on our life.  It was hard to hear. He is such a kind, caring man but this had obvoiusly been building up for some time. He pointed out that everytime we go anywhere I spend all my time looking for the toliet and looking for places to sit down. This is true I know. If Im not needing the loo then Im needing a rest. I get so tired after walking for a while.
 
We recently spent a weekend in London for his birthday and I thought I had done really well, but obviously not. He tells me that sometimes living with my illness wears him down. He says he loves me and wouldnt want to be without me but that he also had to tell me how he felt.  I do my best to encourage him to do things with his friends, like walking, sports, which he does. But I dont know what else to do.  I dont blame him for telling me how he feels after all he puts up with a lot.
 
We are going away again soon, and now I know how he feels I am sort of dreading it. How will I be able to say Im tired or where is the loo!  I will feel like I am spoiling things.
 
Has anyone else had this situation, how do you deal with it?
 
Thank you in anticipation
Diagnosed 2005.
 
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections, asacol


Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 5/5/2009 11:05 AM (GMT -7)   
Maybe this is just the opening you both need to have a good discussion about what you both want when you are traveling and at other times. I know that I can't possibly keep up with my husband, never could even before the CD. But I also always told him to do what he wanted I was perfectly happy to sit on a bench and people watch, or to spend an evening at home while he was out playing softball. So he obviously loves and cares for you, but he is feeling guilty about wanting to do more and leaving you behind. I think he needs you to let him know that you are OK with him going ahead and doing things without you, even if inside you wish you could do more. I would rather have my husband be happy to be with me when he is home, than be miserable and home more often because I made him not play softball or not go water skiing and come home to spend time with me. I'm about quality time, not quantity of time. We've been together for 29 years, married for almost 24 so it must be working.

Can you reassure him that you are fine going back to rest in the hotel while he does a little extra sight seeing, and will he do that? Will he go out with his friends, while you have a quiet night at home and catch up on your rest? Maybe you just need to have a good talk about what you both need. It sounds like maybe he just feels a little guilty and needs to know that its OK by you.

When we go to amusement parks as a family, I will often times have my husband and kids ride on an attraction while I visit the rest room, then we meet up at the exit, or I sit out the ride and people watch if its too much of a "thrill" ride and I'll shop in the souvenir shop, or I go through the line with them and then take the "chicken" exit. There are all kinds of ways around the problem, you just need to work as a team.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 5/5/2009 12:56 PM (GMT -7)   
I think we have all been there, and Zanne gave some great advice. I don't know much more to add to it.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 5/5/2009 12:58 PM (GMT -7)   

Thanks Suzanne

I know we need to have a good talk but know also that it will be difficult as we will both get upset and he will not want to upset me more by saying how he really feels.

He already does quite a lot with his friends, golf, walking club, jogging, weekends away. But he always says that he wants me to experience the same things he does and wants to share the adventures with me. He is a real outdoorsy type and loves to get out and about. We never ever spend a Sunday curled up in front of a film. And the sad thing is that before my illness I was just like him, wanting life to be an adventure. These days I am happiest sitting as a passenger in the car or curled up on the sofa chatting with friends.

I will have to build up the strength to tell him how sad it is all making me, after all I cannot do anymore than I already am. 


Diagnosed 2005.
 
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections, asacol


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 5/5/2009 1:30 PM (GMT -7)   
If he's a real man, he can make time and adapt for stuff that is "you" friendly. If you want to be outdoors and biking, etc, you got to make it happen. There are many different meds, diets, etc out there to play around with. If you want to be chillin at home, that's who you are and that doesn't make it wrong. You both have to be flexible in your life because I don't know how old you are now but as you get older you both will change many times in interests.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/5/2009 1:32 PM (GMT -7)   
One thing you both need to understand is that it probably won't always be this way. Unfortunately, or fortunately, I have been around this disease my entire life (My Mom had it too), so I know that there is an ebb and flow to it. As hard as it is to see, you will have times when you will be able to go out and do the outdoorsy things you used to enjoy. I still go camping and hiking. I just make sure that our camp site is near the facilities and I have a small roll of TP in my pack. I wouldn't go camping or hiking during a flare, but you will have good times, have faith. I have gone on long bike rides, long walks, traveled, done all the things I wanted to with my kids. You just need to be kind to yourself when things are bad, so that your body can heal and you can move on to the fun stuff.

I asked my Husband once if we had known before we got married that I had CD would he still have married me, he was quite honest and said "No, but it would have been the biggest mistake of my life." So if this man is the right man, he's worth having the difficult discussions with, and he will understand and stick by you. I wish you nothing but the best.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 5/5/2009 7:54 PM (GMT -7)   
When I read your post, I was getting angry at him for putting such pressure on you.
"...he has found my illness quite hard to deal with at times..."
Yeah? Does he think *you* are having a picnic dealing with it daily?

Then I read through the other replies and realized that it *does* affect him and that perhaps this isn't such a bad thing to discuss. If he is The One, there will be compassion and understanding. My husband is very understanding, but at times, I feel as if I disappoint him because of our numerous side-stops for bathrooms or my begging out of an outing. I want to advise you:
DO NOT TRY TO DO WHAT I HAVE DONE:
I have tried to ignore my illness and pretend everything is fine/normal so I don't *spoil* one of our outings together. This usually ends in tragedy for my undergarments, especially if I ignore that little pain on the left side, the gurgle or I try to eat a meal in the car as we drive instead of going inside so I have the bathroom available. I cannot stand to hear him *sigh* as I am panicking and trying to scramble into the back seat to use "the bucket" just after we passed a service station. Sometimes, I just don't have the luxury of time and I cannot plan my urges, they occur whenever/wherever they want. I do not have control over them. The only thing I *can* do, is be certain to heed every warning signal my body is giving me so I don't inconvenience ourselves even more with needing to go home for a clean-up and clothing change.
Gentle hugs to you,
heidi
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry......I'd much rather laugh.
2001 Dx'd with UC.  No remission.  No improvement with Remicade.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returned after resuming 6MP.  Changed maintenance med to Methotrexate (MTX) and had great results with IM injections.  Nausea and symptoms returning with oral MTX.  Switched back to IM injections and am slowly improving.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/5/2009 8:47 PM (GMT -7)   
My heart goes out to you. I don't know which is worse the partner problems that come up because of this or the disease itself. I agree with what everybody said already and hope that you can work things out for the best.

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 5/6/2009 12:41 PM (GMT -7)   
If he thinks it's hard to live with, he ought to try being you! My husband actually went through a phase like that though, when I first started having symptoms, and no diagnosis. It was a hard adjustment for him to give up a lot of the things he was used to doing with me. At the time I was pretty homebound, because my diarrhea was completely out of control. Eating out was for sure out of the question. And with no diagnosis yet he wanted to just see a doctor and get "cured". Even though I had already seen a numerous doctors that were giving me the run around.

He came around though quickly. Once I was hospitalized and near bleeding to death I think he finally hit him with how serious my condition was. He's been awesome ever since. Of course now I have treatment for this and I'm in remission, so our life style has gotten ALMOST back to where it was. But even now he helps me find out where restrooms are, and asks me how I'm doing when were out in case I need to go home.

I can fully understand their struggle with living with someone that has a chronic illness. But life isn't all fun and roses. If someone is committed to the person and the relationship they learn deal and be a partner with that person in helping them live with it as well.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Lexapro.


Bluize
Veteran Member


Date Joined Mar 2005
Total Posts : 635
   Posted 5/6/2009 1:25 PM (GMT -7)   
I am a bit angry at him.  Your whole life is different forever and he, well he should walk a day in your shoes.
 
I hope you guys can work things out where you can live your lives to the fullest.
Susan
 
28 years with Crohns in the term ileum.  Feb 07 Resection.  No meds currently..but there will be some I'm sure. Taking acidophilus.


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 5/6/2009 2:08 PM (GMT -7)   
I'm not angry at him. I think he was simply being honest, and it is better to express your discontents than to let them fester and grow. The advice about finding things you can both do and enjoy is good. As for sharing outdoor adventures with you, buy him a camera; he can show you the pics and tell you all about it. Even couples with no chronic illness complicating the relationship have their different interests and likes and dislikes . . . sometimes there is time for him, sometimes for her and sometimes for them both. These things usually work out between people of goodwill; for others they may not, but better to know now than in 20 years. The key is not to feel gujilty about having CD. It happens . . . like lots of other medical issues. I suspect he will do fine as long as you keep communicating.

duplessis3
New Member


Date Joined Apr 2009
Total Posts : 17
   Posted 5/6/2009 6:38 PM (GMT -7)   
Would being in some kind of support group for people that are partners that have chronic illness help?

I frequently ask my husband if he wishes he could trade me in! But he says no. :) Some of his issues are that he worries about me alot and wishes he could do something.
Finally diagnosised with crohns. Psoriasis, rosecea, sebborhea, contact dermatitis, food allergies.

One husband, two sons, one parakeet, four cats, eight hens.

Proud owner of urban flock of hens!


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/6/2009 8:01 PM (GMT -7)   
I agree with everyone above but wanted to add some suggestions. Try some therapy for yourself - it will help with the feelings that you are not living up to some set standard, and it will give you someone to really vent to about how nervous you are for an outing, how guilty you feel when you say no, etc. Then he might not have to feel as guilty pushing you to do something if you are working it out w/ a therapist. Now you might gasp and say why should I care if he feels guilty? But now that I am in remission I am so happy my husband tried to keep me doing things and not let me become home bound. It is very easy to give up when it is so hard and when you feel so much pressure to be normal. Also, you will learn some coping mechanisms to make going out easier. Yeah I know no therapist can cure crohns. But I bet you get really nervous before you go out, and scope out the bathrooms asap, and worry what ifs, etc. With the help of my therapist I learned to stay in the present more, to be prepared, to not push myself too hard, but to also not expect failure every step of the way. I also had to realize the worst that would happen is I would poop myself. I don't mean holding it in so he doesn't have to make one more stop. That is just silly. But being too afraid to go out because you might not make it. 99% of the time you will make it to the toilet and for me, it is worth that 1% time of embarassment to continue living my life. I understand how much it hurts to hear how your disease effects him. But I think his honesty makes your marriage that much stronger. I agree with the previous poster that you should take breaks when you need to. But at the same time show him how much you are trying and enjoy the time you do get to go out with him, even if you have to fake it for awhile. Each trip gets easier. I also find a low dose of xanax helps me get through a long w/ a healthy dose of immodium!
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 take xanax prn for situational anxiety (aka no easy bathroom access). 


WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 5/7/2009 7:30 AM (GMT -7)   
This is an issue of such relevance to me right now. I am hopefully finishing my first major flare up since my diagnosis with CD in 2005. I am getting married on May 23rd to a wonderful man who is just now realising what he is letting himself in for!! We have been together for about 2 and a half years, and I have not really had any problems in that time until the last couple of months. I was hospitalised last month when my bleeding would not get under control.

I think that it is great that your husband is sharing his feelings with you. I am very concerned that my fiance is now going to be very wary of my overdoing it, and that he is going to think twice about us doing things in case I get sick. Once things are back under control I want us to be able to put the CD on the back burner and live our lives, but I am afraid that he will always be worrying about it.

The other problem is of course children. I have 2. They have been coping very badly with my flare up this time. My daughter is 15 and going through the bad teen phase. She is pushing all my buttons on purpose to see how far she can go. She wants to be in control on some level, but not really, and I haven't got the energy to fight her.

My son is 11 and he is very worried about my having been in hospital. He is finding it hard to see me so sick, as he still needs me to be invincible.

I think it is so important to talk about how our disease affects everything in our lives. Since stress is such as factor, we really must get a handle on all of our stressors. Therapy as a couple/family and as an individual seems like a really good idea.

It sounds like your husband is trying to reach out to you and that is really wonderful. I'm sure that you will be able to work through this together. Best wishes.

littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 5/10/2009 3:56 AM (GMT -7)   
Thanks everyone for all of your advice, sorry for my delay incoming back to you, I have been having computer problems.
 
I spoke again to my partner who I could tell felt guilty for upsetting me. He thinks he understands because he has UC, he also is hard of hearing and wears hearing aids and has skin problems. But for him his UC comes in flares and he can go years without hardly any problems. So although he partly understands I think he also forgets how bad he feels when things are bad. 
I notice that some of you mentioned flares and then periods of remmision. My consultant says how I am now is as good as it will get for me, I never fully go into remission. I still go to the loo 6-8 times per day (on a good day) have some pain and lots of tiredness. This is despite infliximab, ranitidine and asacol.
 
I think I just need to be firmer and say no and mean it. when I dont want to do something. I often try to do things just so I dont let anyone down, when really Im not well enough to cope. To be fair overall I do a pretty good job with my life. I work full time, eat out, go to the gym. Heh no wonder Im tired!
 
Also I am due to start CBT therapy in June, have been waiting since last August (but that is the NHS for you). It will hopefully help me when I am feel crap. The therapist said she will teach me how to cope. I have about 3 bad days per week at the moment and get very depressed.
 
So wish me luck on my holiday that I am at least able to do some sight seeing. And hey is I cant at least I will come back witha  good tan from all that lazing around on the sunbed
Diagnosed 2005.
 
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections, asacol


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 5/12/2009 9:11 AM (GMT -7)   
Miss Muffet: I soooooo understand...I have pushed myself...I like pushing myself...I like doing things...but I guess I have to adjust to this "new normal". My body just won't do it anymore.

Anyone feel the guilt as I have? I watch my DH struggle, I see the pain in his eyes, and I wish I could ease his angst...since I am the cause of it...I have made his life so, so hard cry ...I feel as if I am stifling him...I try to get him to do more...but he wants to be there for me... confused
"The earth laughs in flowers"

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