Crohns, CF and Relationships.

[Pirate]

As people have mentioned before about Crohns being a strain on relationships, it is also worth mentioning that though we all find great support here on the CF we need to learn to balance our time here and our time with our partners.
It is possible to get so wrapped up being here talking to other Crohnies because everyone understands what each other are going through that we tend to not pay enough attention to our spouses or partners. We forget that they are part of our life with Crohns whether we like it or not. They may not feel the pain and stress that we go through, but they suffer as much just by feeling so helpless in knowing what to do to make us better.
And than we find such a great on-line support group like this and we spend more and more time here and help each other, make each other laugh and cry, feel sorry for each other to the point we don't see that our partners are feeling pushed out until it is too late.
When it jumps up and hits you in the face that there is a problem, it maybe to late to correct it. Feelings are too hurt and words are said that can't be taken back very easy, if at all. And than you find yourself trying to pick up the world you had after it has crumbled around your feet.

Please, everyone, take a step back and have a really hard look at your relationship and ask yourself, "Am I giving them the best of me or am I pushing them out."
If want and need them beside you than for God sake give them more time than you give here. Don't get me wrong, we need to have this place for support, but our main support is only a spoken word away.
Please don't make a big mistake that can't be corrected.

 

[soupdragon69]

I have this feeling that something triggered your post Pirate...

Whatever it was we can understand your concerns whether its due to seeing so many on here so much or another reason..

Something you may perhaps have overlooked is that spouses do come on here - Kimberlie and Mike are a classic example and are worth their weight in gold. I know Duncan for instance will read stuff if I ask him to, even though he doesnt post as it helps him understand things a bit more. He also appreciates that the support here is second to none and it helps me immensely to rebound off everyone. He asks me about things here and in general shows interest. I usually am only on here when he is asleep for instance - like now! LOL

I do agree there has to be a balance and each of us is to find that for ourselves. Its the balance of support/supporting, offloading so that your spouse doesnt deal with all of it versus ensuring they are included and quality time is spent.

Nice to see you are thinking of everyone though.

((hugs))

 

[Crohn's 35]

Hey Pirate I understand too. Becareful what you wish for. I was on here alot but when my husband is home, I try to limit it. However, he now has a laptop and he is at work now and he is late calling me ...why??? He is on his computer!!! Guess I had it coming. He is being trained for Excel but he also loves on line tutuoring for fixing his truck. Now we have wireless so when I get in the morning he isnt on MY computer. IT is all new that is ok. We still take the time to be with each other. Winters are harsh here so golfing is our first love.... in May!

 

[Astra]

good points!

like many new things 'the novelty will wear off'
this happens to people who discover Facebook, Twitter etc, for the first time, they hammer it, then it fizzles

 

[Pirate]

Jan, I agree that it is a great place to get support and the advice is next to none. But it is easy to get too involved here and forget to include your partner. I have shared a lot of the stories, laughs and heartaches with Janis from here, but its easy to not see that a partner can feel jealous because they are missing out on your time that could be spent with them.
Its so easy to get caught up here and not see what is going on in your own world. And I don't want anyone to suffer in thier relationships because there are more important than thing in the world. Relationships are hard enough with Crohns.
I do believe in this site and it has brought great insight and advice to me and I am so thankful for it, but it can be addictive to the point of ruining relationships if you don't keep your time balanced.
Plus it has given me great, great friends that I am so happy to have met even if only in cyber-space, but one's partner is the only one that can give the physical comfort we need.

 

[InkyStinky]

Pirate, thank you for your words.

While I agree with what Jan said so well, I also see the wisdom of what you said. I am dealing with my first flare-up since getting married, and just dealing with a chronic illness makes it far too easy for me to get wrapped up in myself.

My wonderful husband laughs right along with me at the Crohnie-humor of this community and is interested in the different forms/treatments of IBD. And yet I too see the need to work harder at making our relationship "we before me".

Again, thank you for putting this into words.

 

[Crohn's 35]

I agree with all being said, I have been through relationships that don't work, and being alone with this diease is hard enough, your partners are the ones who have the courage to look after you, so we have to look after them too. Being left for a computer or a disease it would be devestating... think of them, they think of you!

 

[soupdragon69]

Erm Pirate I wasnt actually having a go about what you said...

I was agreeing and pointing out that this forum is also a place for spouses AND agreeing the importance of quality time together and balancing these things out together. Certainly not excluding one aspect or another. As I mentioned - balance - just as you did.

Forums/websites have their place in providing support and information but the real grounding is at home, our spouses have the toughest time watching and coping with us as you have already pointed out - I just didnt see the need to go over what you had already said. Was just trying to make the point that no one is excluded from the forum at all, plain and simple and it was important to ensure this site isnt just for those suffering from IBD or related issues but those around us too. Does that make any sense??

I have nothing else to say really other than I definately did not set out to offend in any way at all so I will apologise now if I have!

 

[Pirate]

Jan, you didn't offend me in anyway and I'm sorry if it seemed like I was . Sometimes I feel as if I haven't put into words what my mind is thinking and think others misunderstand me. I also sometimes read to fast and after reading your post I realize what you were saying.
Things are a little rough for me right now and I've got things to work out. I really don't want any one here to fall into the same mind set that I fell into.

 

[ameslouise]

Pirate and everyone.... thank you for the perspective. I have found so much... well, JOY, since coming on this forum, that I do fear I am becoming addicted.

The timing of your post could not have been better. I needed that reminder. Thank you.

Now, with my son off at a friend's for the afternoon, and hubber and I have the house to ourselves... I will excuse myself for a few hours...

 

[imisspopcorn]

Those are wise words indeed, Pirate...I know I needed that reminder.

 

[Pirate]

Erazer, I cannot blame the drugs. There comes a time in our lives that, even with CD, we have to take the blame on ourselves. This is that time for me. I cannot blame this forum, CD or the drugs that I'm on. It is on me.

I have become addicted to CF because it is a place to be around people that are normal to me. I read so much about "normal" people not understanding that I actually believed that. To the point that I picked a fight with Janis when she just wanted to talk. To the point that I accused her of not having a clue of what I go through. To the point of yelling at her that I could have survived CD even without her. I could not have said more cruel words to her after 24+ yrs of her being by my side fighting for my life.

Its not this Forum's fault, I am an adult and I take personal responsibility for my actions. But I was so addicted that it blind sided me and now I don't know if I can fix it. I was so caught up with all my new friends and thier problems that I missed my own and now I am trying to help prevent it from happening to anyone else.

I don't care about any "Post of the Week Award", I just want the one person in my life that means the world to me. I want my wife back.

 

[Astra]

Pirate

don't beat yourself up with thorny branches too much!

Janis will understand, that you've had a 'lost weekend' but now you're back!

this happens to us all! whether it's computers, forums, social networking et al, been there, done that!
reassure her that all's well, you lost your way, and have lots of quality time together

besta luck
Joan x

 

[My Butt Hurts]

Good for you Pirate that you realized it. Now it can only get better.
This is a great reminder for us. I have heard "Sometimes I think you like your CF better than your local friends.", and "I think they make you laugh more than I do." I've definitely had hurt feelings in my house because of CF.
Our CF life is so real to us, but we need to keep the physical friends in our lives close too.

I figured out how bad my computer addiction is a while ago, and just this week I have started cutting down (a bit, lol). I'm doing okay, but find myself going to bed early to get away from it.

Very wise words, Pirate. Thanks for sharing them.

 

[soupdragon69]

Pirate,

I will happily stand beside you and say I am not the best at putting into words regarding my own thoughts.

However, if you notice the very first thing I said in my first post was that I had a feeling something triggered your post and my "gut feeling" was there were issues at home.

Many of us have been there. I am VERY lucky that Duncan doesnt feel threatened in any way but we work very hard to maintain what we have between us. Today we went out shopping and got a few things for the house - just plain ole cleaning stuff but we also had lunch out with is eldest boy.

Towards the end of our time out Duncan became unwell so we came home a bit earlier than planned and he went straight to bed. I did some housework and intermittently when I needed to stop - rather than watch TV which I find quite boring or read a book which ends up with me asleep I chose to come on here and also to do some web based research for some things I am trying to figure out myself at the mo.

So yes I very much agree with you our relationships are extremely important and we must cultivate them. I could "feel" your anguish in your first post and that is why I replied as I did by trying to get you to understand its really ok to take a step back and regroup together as you are doing.

Everyone that knows me fairly well here knows I wasnt online from October until January because I just couldnt cope with moving house, area, new job, health, moving in with Duncan AND setting up internet. The internet lost because I needed energy for other things and all my stuff was still boxed LOL

I happen to be online a bit more at the mo as it makes me sit still and rest a little without falling asleep during the day so much - even though I did sleep for a couple of hours earlier this evening - and I am off work sick so have a bit more time than usual to "play" here! ;-)

We all do take your words to heart and know very much they come from the heart Pirate so dont think we ever will dismiss them!

For the record those of us that are called Janis/Janice we can be a pretty determined bunch - in case you hadnt noticed and make sure we are very clear when we do need to be heard ;-)

Hang in there. Thinking of you both ((hugs))

 

[Pirate]

Thank-you guys for the support. You guys are great in the fact that you help each other and have helped me get through this.

A special thanks to Pen, you have helped in more ways than you can imagine.

We had a very long and good conversation last night and we are going to be busy working on things for a while but things are going really good. I will still be dropping in but just won't be spending 5-6 hrs here like before. She understands that I feel that I need to help others here and I understand that I need to give her the majority of my time. So if she feels the need to talk when I am here Then I will be logging off.

I love this forum and all of the people on it, but my heart and sole belongs to the beautiful lady that has stood beside me and has forgiven me for my terrible judgement in the last few days.

Thanks for being here.

 

[Jennifer]

5-6 hours is a long time. I only spent that much time on the computer playing World of Warcraft. I don't play anymore though cause it costs too much.

It's easy to get sucked into a lot of things like computers, books, games, basically anything that helps you escape from the real world. I learned this lesson long ago, mainly because my ex of 5 years together spent more time on the computer than with me. It pushed me away so much that we broke up eventually. I however grew my own computer addiction because there wasn't much else to do and I had to learn balance with the new relationship I'm in. We both need to relax and spend time apart but we balance it well by spending time together and limiting our alone time. Most of the stuff we'd usually do alone we both like so we wind up doing it together now.

The hurtful things you said Pirate can be mended. Sounds like there was something going on in your life that fueled your desire to escape real life and cause you to be on the forums for so long. That's how it usually starts. Try to figure out what that is, work on it and things should get better after that. Watch for the signs in the future. It doesn't have to be the computer you're spending so much time on, it could easily be fixing a car, gardening or even multiple things. If you find yourself engulfed in an activity or activities for hours outside of what's required (job, family functions), then take a step back and find out what's causing you to focus on said activity so much.

Sure it's easy to lose track of time, but that's an excuse to me because you should pay attention to the time as well. My ex used that excuse at first but after a while it turned into no apology and only paying attention to me when I forced it.

Edit: And if you simply cannot manage your time well and you know it, then set up a timer.

 

[Crohn's 35]

A special thanks to Pen, you have helped in more ways than you can imagine.

Awe shucks, anytime! :redface:

 

[Pirate]

Crabby, I think a lot of my spending time on here was because for the first time in the 24 yrs I've had CD I have people to talk to that has CD, also. After about 4 months of watching TV by herself at night and staying at home on weekends really did put a rift between us. And the only one that seen it was her. Before joining the forum we did everything together because we enjoy each others company so much.

 

[Crohn's 35]

Some times a heart to heart really helps. My husband used to do alot of things by himself and one was dangerous, SCUBA diving by himself. I can snorkle but that doesn't help if he is 50FT +. Our kids are out of the nest (second marriages for us both) and I told him we need to do something together or we are just going to lose interest.

Well he sold all his Scuba gear, traded for Golfing gear . We had golfed separately many years ago, but we both started together and sometimes we laugh so hard (missing balls, etc, and bad words I found on the golf course) we almost peed our pants. MY mouth got my daughter and hubby to fall out of the cart from laughing soooooo hard.

Is is something we do together all summer and we actually started going to the movies, first time together since we met ... coming up 10 years. So if you want your relationships to last, YOU both have to maybe take up something you both enjoy. We help each other and laugh.. THAT is what life is all about!

 

[soupdragon69]

I couldnt agree more Penny!

Duncan is mad about history and learning from it. I love nature and countryside etc etc. We both love the sea/ocean. So next weekend we are going away for a day by the sea rain, hail snow or shine - we dont care what it does as long as we are out in it! LOL

We also spend alot of time laughing and I can never stay cross at him for long because of that!

Crohns can take so much of our independance away at times its easy to get into the rut of apathy or our own wee world. Taking a broader view every so often prevents the myopia and makes life all the more enjoyable because we learn too - rather than hiding away in our safe little shells and watching the world going by!

 

[Pirate]

Actually, we do have quite a few things we love to do together. Walking (the girl's a health nut), I love to do genealogy and she loves to go with me to find family plots and to visit old family homes. I love to golf, but she doesn't so I get to go a few times a year with my brothers. We both love to visit old Light houses and talk to elderly people.(Its a big joke with my family, "There they go again, gabbing with strangers.)
We both are members of the Patriot Guard Riders, just hard for me to attend missions in the winter.
Oh Jan, I love history. Janis laughs at me cause if I run out of books to read I'll grab an encylopedia and start reading. She is not into computers but see will sit and listen to discoveries I have found on the internet. Today I showed her what a J-pouch was.
We love our motorcycle and we love to camp. Come summer time I won't be on here very much at all.

 

[Tan]

Pirate thank-you for sharing something so personal and you are totally right in the fact we do need to consider our partners who have stood by us. We do need to have a think about how much time we spend on this forum I do know sometimes Jamie will say to me you spend more time on there then with me! I think to myself that he is only watching TV but then again its something we were still doing together having a laugh at whatever we were watching. Even now he is watching Cool Runnings and said my god you are addicted you get off the plane and straight on the computer. Im about to hop off tho and join him on the couch to spend some time together after being apart for 4 days. Thanks for reminding us what is important in life.. don't get me wrong its great to have friends on here that understand and can give support too, but the most important person to me is my husband and I would def be lost without him.

 

[soupdragon69]

Sounds to me Greg as though Janis and I would be hard pressed to seperate you and Duncan on the history front! LOL

He isnt big at reading alot but will sit for hours and watch programme after programme of history, world at war, all sorts of things. He is getting into geneology as he is of Egyptian decent and I can see it coming through at times with some of the looks he gives me ;-) He has that very pronounced nose and dark looks lol

We are a right combo if we have a disagreement as he goes very quite and I will steam away.

We both hate upset though and will work very hard to resolve things as fast as possible.

I love swimming - used to butterfly and swim distance years ago - we were just talking last night how it would be good to start back at it again and do so together, so we are going to have a look at some local pools - we have an abundance of them here as we have a well known sports university just up the road with olympic pools. We will be happy with one that suits our needs so we can do some gentle exercise and build from there!

I come upstairs to my laptop on a desk and Duncan uses his in the sitting room on wireless. I go elsewhere as it gets me to a different part of the house for a while and away from TV. Duncan used to have the TV on 24/7 - even when he was asleep as he couldnt get to sleep without it!! Now its me with the light on reading! LOL

I am a terrible bookworm and constantly have at least one on the go - thrillers especially, cookbooks, nature books, astronomy, the list is endless. LOL I also have a huge music collection and Duncan is getting into music a bit more now.

Right I am off to the hairdressers now - trying out a new colour to enhance my own and work out a few more ideas towards the wedding. This afternoon we are picking up Duncans new car and off to see his brother Harvey afterwards. Lots of fun today which makes a lovely change.

Thinking of you both...

 

[Cackman888]

weirdos

 

[CrohnsHobo]

I only check the forum when I am at work. My significant other also works with me, so we see enough of each other between home and work. We try to make sure we have our own things since we see so much of each other. She has her Roller Derby and I had my marathon thing last year, video games, and this year it looks like Softball and hopefully kayaking once the ocean warms up.

 

[soupdragon69]

Aye Cackman888 - wouldya look who's talkin! ;-)


Crohnshobo, couldnt agree more with you. We are individuals at the end of the day and when we share a life with another its about learning on all fronts but also about enjoying life and not ending up too stressed about it all too.

 

[Jerman]

Erazer, I cannot blame the drugs. There comes a time in our lives that, even with CD, we have to take the blame on ourselves. This is that time for me. I cannot blame this forum, CD or the drugs that I'm on. It is on me.

I have become addicted to CF because it is a place to be around people that are normal to me. I read so much about "normal" people not understanding that I actually believed that. To the point that I picked a fight with Janis when she just wanted to talk. To the point that I accused her of not having a clue of what I go through. To the point of yelling at her that I could have survived CD even without her. I could not have said more cruel words to her after 24+ yrs of her being by my side fighting for my life.

Its not this Forum's fault, I am an adult and I take personal responsibility for my actions. But I was so addicted that it blind sided me and now I don't know if I can fix it. I was so caught up with all my new friends and thier problems that I missed my own and now I am trying to help prevent it from happening to anyone else.

I don't care about any "Post of the Week Award", I just want the one person in my life that means the world to me. I want my wife back.

Greg don't be so hard on yourself your not the only grumpy bear in the woods. Everyone has an off moment (or weekend) where we are just not ourselves. MY wife and I are unique in that she has fibromyalgia so we both have health issues. She is also very ahem- assertive and outspoken and will tell me to "go fix your face"

Greg, i have moments where I am just on overload and snap for whatever reason. I say things that I don't mean and feel like an ass afterwards.
Talk to her bro, face to face, eye to eye at a place you let her pick.
You guys have made it through so very much together lean towards each other for support not away from pain,depression, etc..

 

[Pirate]

Jerman,
We did go to a little sports bar that she loves and had diner and talked for 3 hrs and than when I got home she called and we talked for about 4 1/2- 5 hrs on the phone. She's back home and we have come to an understanding and things are getting back to normal. Minus me here so much.
Thanks Buddy, for the advice.

 

[MacJr]

Please, everyone, take a step back and have a really hard look at your relationship and ask yourself, "Am I giving them the best of me or am I pushing them out."
If want and need them beside you than for God sake give them more time than you give here. Don't get me wrong, we need to have this place for support, but our main support is only a spoken word away.
Please don't make a big mistake that can't be corrected.

Yes! Yes! I have it easy because my boyfriend is alway sick alot with stomach problems. My stomach noises don't bother him - because his is loud too! He is there for me running to the store for medications or getting me special foods when things are really bad. I love him so much and so grateful I don't feel alone with my problems when I'm with him.

 

[kenny]

its like that with all forums and e-clubs. When you do a real world club, like flying model airplanes or what ever you want to use for an example, they generally have set meeting times and limitations. The internet forums make it far too easy to access so you have to find and set your own limitations. That is not so easily done as said. It happens to everyone Pirate.

 

[Silvermoon]

A little bump to remind those of us who have other people in our lives.... :redface:

 

[fromthegut]

I often think of partners as partners in life. That means my friends and family. I don't have a partner right now. I'm at home and alone. I've met lots of wonderful people on the net over the years. it is really a challenge when they move physical distance or worse pass away. The internet is such an intimate place.

 

[xoxava]

i deff understand this one. i LOVE coming on here and asking questions and being able to communicate with people who actually understand. my family and my boyfriend are always there for me, but somehow it just isnt the same. i appreciate all their support and time. but i always make sure i have a little bit of time to come and seek some people who have an understanding of what im going through!