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How do you cope with your disease and a spouse who has one as well?

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Crohn's Disease
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Posted 1/19/2011 7:09 PM (GMT 0)
Hello again all,

I am a new member here and posted my introduction not too long ago. A quick recap is that I was diagnosed with Crohn's Disease by accident last December when I had an MRI done for pain in my back. My colonoscopy is coming up and I am currently on zero medicine for Crohn's until after the results come back. The difficulties I am having right now are with my husband who has Fibromyalgia and severe depression because for the last ten years or so he has refused to get pain medicine for it and has refused to come to terms with it. Due to this he has hurt our marriage significantly that we are also in marriage counseling. He is finally going to individual therapy and is on several depression meds as well as Lyrica to help with the pain.

Life has just been so hard living with someone that is sick one day then fine the next and the world seems to revolve around them. How on earth am I going to be able to even come to terms with my own illness when I honestly do not feel that I have the time or energy because it is filled with comforting and helping my husband with his? I love my husband but I feel so overshadowed by him and his health problems. I am emotionally drained and feel like I am attuned to his moods because every time he is down my anxiety is on full alert. It is so hard to be around someone that gets mad at the slightest thing. Because of all of this I recently got on Citalopram 20mg a day to help with the depression of living with someone who is up one day and down the next. It is helping some and I am going to set up individual therapy to hopefully cope with all of the stress this has had on me and the new stress of my own disease. I really don't want to put my family through the hell my husband has by pretending I am normal when I am not and everyone around me suffers because of it.

I would really love any advice on how to deal with something like this. There are no support groups in my area to deal with a sick spouse so my only option is individual therapy and venting on here. I am sorry if I am coming off depressing about all this but I really am having a hard time dealing with all of this.

Libra1979
Posted 1/19/2011 8:28 PM (GMT 0)
I have no advice and alas, all I can offer is cyberhugs (((((((((((Libra1979)))))))))))))))
JMHO, but it seems that you are doing all that you can...and it must be difficult to be in this position...also, if you need to let it out, release, whatever, we're here to listen, it's been helpful to me...

No you are not coming off as depressing...and really, it's okay to vent, it can help sometimes...
Posted 1/19/2011 8:41 PM (GMT 0)
I don't think I could handle it well. I'm too sick to take care of someone else rift now. It's hard enough to get through the day without additional responsibilities. Therapy is definitely a good thing and helped me come to terms with my disease. Just take it one day at a time.
Posted 1/19/2011 10:06 PM (GMT 0)
Both myself and my partner have crohns. It isnt always easy & sometimes we find it difficult to be supportive to each other, especially when we feel ill. Having said that we are both caring and understanding type of people. I dont want to sound harsh but your partner sounds wrapped up in his own illness and that perhaps he is not thinking of how his illness and his reluctance to seek help is affecting you. I think that you really should tell him (on one of his good days) how you feel and how you need help and support too. Otherwise I fear you may end up resenting him.

Every now and again my partner has to remind me that I am becoming all consumed by illness, and that I am wearing him down. Although it hurts at the time I do go away and think about it. I then think - yes it isnt all about me, I have to think of our relationship too.

I suffer from depression too - and when I am depressed I can drag my partner down with me. I have to take time out and sit and look at how my behaviour affects others.

I hope you can sort things out because you must look after yourself as well as your partner
Posted 1/20/2011 1:27 AM (GMT 0)
Hi. I'm so sorry you have been diagnosed with crohn's disease. It is a tough diagnosis to handle. My husband has crohn's disease, and I'm hale and healthy. So, I'm the caregiver in our relationship at present, and sometimes I am completely overwhelmed at how our lives are overtaken by his illness.

My friend's husband suffers from severe chronic major depression, and for years has not been able to find a medication that would help. It is a silent but horrible illness that really takes a toll on them both. She recently had to go through a heart cath for a suspected blockage, and during that time, instead of propping her up, she had to somehow find the strength to prop herself up and to pick him up as well - because her getting sick is one of his biggest fears and it plunged him into a severe black downward spiral. It was a very difficult period for them.

But since then, he's gotten on an anti-depression medication called pristiq, which seems to have helped him a lot. She is still dealing with heart disease and he's able to cope much better.

While this anecdote has no direct relation to your situation, I think you should not give up hope that the new meds that your husband is on will help. I think perhaps the depression is making your husband more pessimistic and callous in general, and hopefully as the meds kick in, he can be a more supportive husband.

Also, I had a really hard time being supportive of my husband - not because I did not care about him, but because I had a massive anxiety response to him getting sick, that very quickly got me depressed and despairing. I am also on an anti-anxiety med now, and doing much better, and much better able to cope with the twists and turns of life in general.

(((Hugs))). Hope your hubby can find his way out of his little hole soon, and be there to hold your hand when you need it.

PV
Posted 1/20/2011 2:13 AM (GMT 0)
Thank you all for your caring words. I have been thinking about asking my doctor about some anxiety pills for awhile now to help with all of the stress. I think I will find out about it tomorrow and hopefully it will help me cope. Hopefully when my husband is stable mentally and physically things will get better. I know I cannot ignore my own condition it is not something that goes away just by wishing for it.

Thanks again,
Libra1979
Posted 1/20/2011 2:51 AM (GMT 0)
Do you have any family members or friends that you can go to for help or comfort? You have your hands full. HUGS!
Posted 1/20/2011 6:11 AM (GMT 0)
((((((Libra))))))) I think you are doing some really good things by getting counseling, and meds to help. Being a caregiver is very hard. Having a chronic illness is very hard on a marriage, and you both have them.

Since you are at the beginning of your diagnosis, you need to know that things do settle down a bit once you've had time to learn about it. I felt overwhelmed by all the new info when I first got dxd. It takes a little time, but it's good to know that it will not always be the time-consuming focus that it is now. Also, the more you are able to keep your flares under control, the easier it will be for you to deal with. Your worrying and stressing about your husband is not good for your cd at all. Definitely keep your doctor aware of these things that you have to deal with.

I'm the one with cd in my marriage, and have chronic pain and fatigue that slows me down quite a bit. Several years ago, my husband was told he was dying. The stress put me into a bad flare, and at the same time my hubby was recovering from major surgery. We had 2 kids and I remember it was so hard just to get through each day. Thankfully, hubby is not dying, and mostly life returned somewhat to normal. But those were tough days. Somehow we managed to get through those impossible things. Maybe we are just a little bit stronger than we know, when we are really put to the test. We also have a very strong faith which was and is immensely helpful to us.

My hubby has on occasion some episodes of depression. I've honestly had to back off and let him handle it himself, to keep myself from getting too stressed. I wish I could do more, but I'm aware of my limits for my own health needs. Me getting sicker will not make a depressed spouse feel better.

Don't feel guilty for looking out for yourself. Don't ever feel guilty for needing to vent on here. If we all had "real" people in our lives to talk to about this, this site wouldn't exist. We may not have the answers, but sometimes just knowing others care and understand can make such a big difference. Take some deep breaths every so often, try to do something you enjoy every day, and I think like that serenity prayer says: we need to understand what we can and cannot change, and be ok with those limits. I truly hope there is improvement in your circumstances soon. Til then, hang in there and know we are here for you.
Posted 1/20/2011 6:36 AM (GMT 0)
It's not easy for family members.. They try to be understanding but it's difficult since they aren't going through the same experience.
Posted 1/20/2011 3:47 PM (GMT 0)

In my opinion, it may actually help things for you both to have medical problems.  I have Crohn's, arthritis, etc. and my husband has spinal stenosis and degenerative disk disease.  Until I had the arthritis, I didn't really understand when he didn't want to go do things because he hurt too bad.  I completely understand now and we are both content to just sit on the couch or take a nap some days.  We have a much greater understanding of what each other is going through.  When I'm sicker, he helps me and it takes his mind off of his back.  When he's sicker, or recently, he got injured and I had to do almost everything for him, it took my mind off of my pains, which was really nice for a change. 

It will definitely take some adjustments, but this may end up being what he needs to come to accept his own problems and get on the right meds.  If you talk to him about it and let him know that you need him to take care of himself now that you have your own problems to worry about, you might find that he will indeed step up and do what he needs to do.  My husband used to avoid drs, meds, etc. for his back, but once he learned that I do rely on him at times now, he started being much more responsible and got on different meds, got different drs, treatments, etc.  Best of luck to you.  It's not easy and anxiety meds definitely help, but it can be done and it can work to both of your advantages for you both to have an illness. 

Posted 1/20/2011 3:49 PM (GMT 0)

I live several states away from my mother and siblings so we are not close. My mother acts like a crazy teenager so every time I finish talking to her I feel more stressed out if that is possible at this point. She cares more about my other siblings and talks about them and their problems to me so I can’t talk to her about my problems. The few friends I have always just vent to me and don’t really want to know what is up with me. It seems to people I talk to including my husband that I am a sounding board

 As for my husband’s family they know he has Fibro but have refused for the last ten years to see it has a disease that does not go away. So whenever my husband uses a cane they say the same thing “Oh it came back?” My husband and I are going to have a sit down talk with them to express how we have felt about their responses and explain why my husband is now on Lyrica and depression pills which are freaking them out at the moment even though he is actually feeling better than he has in years by being on them.

I have taken positive steps with depression medicine and soon therapy because I am just angry with my spouse because he has let his disease suck up our marriage. I want him to be comfortable with me but I am sick to death of hearing him talk about his pills and the side effects constantly. Is it wrong that I want him to ask how my day is and care about what is going on with me? We have marriage counseling next week and I will go over these things because I feel my anger building and it is not healthy.

Also, if anyone has any tips on what I can do to get some energy I will gladly take them because I am just exhausted lately. I drink water and eat snacks throughout the day. I am taking gummy vitamins because the women’s one a day makes me sick at the moment. I am now playing on the Xbox Kinect for 20 minutes or more to get my workout in everyday as well.  My blood work came back fine I am not anemic or diabetic and tested for thyroid problems which came back negative. Someone mentioned testing for Vitamin D levels or something? My Gastrologist did blood work on me too and it came up fine even though I have no idea what they tested me for. Anyone have any ideas?

Libra1979

Posted 1/20/2011 3:59 PM (GMT 0)
Have you had your vitamin B12 levels tested.  You may need B12 jabs.  B12 deficiency can make you feel really tired, and is commen in those with crohns
Posted 1/20/2011 4:17 PM (GMT 0)
I think getting your vitamin D levels, and also Vitamin B-12 levels is a good thing to do. It also doesn't hurt to just add some vitamin D and a B complex to your daily regimen. I must say if you are feeling depressed, that in itself zaps your energy. I certainly feel that way when I am depressed. I'd rather just lay down and do nothing and see absolutely nobody, and not answer the phone; basically I just withdraw. The meds have helped me with that.

My husband being so sick with crohn's put me into depression and massive anxiety. I got to the point where people were more concerned about me, than they were about him! I think medication really does help, as does therapy. So, I think you're on the right track there. Remember, things don't change overnight though - it takes about 8 weeks to feel tangible changes.

I know one thing I miss is having my family here - my parents are in India, and I'm here in the US. My husband's family lives in a different state, and in any case, they have their own health problems. So, it's just my husband and me, and we aren't church goers - he is Buddhist in his beliefs, and I don't know what I am. And so we have very little community support - and I've often thought about maybe attending a support group to meet people who face the same problems and emotional issues we do. Perhaps that is something you can look into? See if there's a Crohn's support group nearby that you can attend, to meet like minded people.

Hang in there. When you are first diagnosed, it is a very hard pill to swallow. Things will get easier, and you will learn how to cope over time.

((Hugs))
PV
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