hard to live with

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

I think we have all been there, and Zanne gave some great advice. I don't know much more to add to it.

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.

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

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.

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.

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!

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