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Life and love with a spouse with chronic illness

Posted: Fri Apr 25, 2014 2:19 pm
by maxxim
Came to TMB this morning because I woke up early with a lot on my mind. I think i'm feeling a bit distressed and depressed at some recent changes in our marriage bed. I'm not sure if I'm looking for advice, but need to vent a bit and I just feel I need to share this stuff going around in my head with someone. I just hope I don't sound selfish, because I know compared to some other couples represented here our MB is great.

The story: DW has suffered from CFS (Chronic Fatigue Syndrome) for over a decade, we are now in our late 50's and empty nesters. It took us a while to make some initial adjustments to DW's illness, but overall we did well. In recent years, I've been able to work from home, so I can more easily assist around the house with laundry, shopping, cooking evening meals etc. I have made a lot of changes to "fit in" with the challenges of her condition and work out what works for us. We pray that one day DW will be free of the fatigue and pain.

Sexually, we are both HD, and as we came to grips with the reality of her condition we didnt always get it right, some counselling helped, and in the last few years we had been doing really well. We agreed to aim to be intimate every day and we do whenever possible, usually in the mornings because that is the best time for DW. We love it and it is a great way to start the day after our prayer time.

Since the start of this year however, DW has been experiencing increasing pain in her hands, arms and shoulders and it has had a big impact for my experience of our lovemaking. Understandably, she has become increasingly passive and we now can only use these positions that are comfortable for her ie missionary, spoons and "T"". These days foreplay for me is usually just enough manual stimulation to get me erect. She finds too much manual stimulation uncomfortable / irritating, but welcomes the use of lube and a bullet vibe.

Increasingly, i'm finding that she will climax before me from PIV, but I'm not reaching a climax quickly and needing more stimulation than extended PIV is providing. Recently, I have finished sometimes by masturbating while we are cuddling after PIV. She is says she is OK with this, but I know she is feeling like she isn't pleasing me the way she should. Over the last year, jaw pain has also prevented her from giving me OS and somehow, that has lessened her desire/ willingness for OS on her too which she used to really enjoy. So there has been lots of change for us in our MB.

I think I am grieving for the loss of ableness in my DW, and the impact on our lives and now increasingly in our MB. I love her dearly, but I'm scared of the changes and how I handle her reducing capacity for life and love.

Up til now, I thought I have managed to adjust OK. But the last few nights I have been having very sexual dreams featuring DW or some anonymous woman where in the dream we are able to enjoy the variety of positions, OS and sexual play etc we enjoyed in the earlier periods of our marriage, waking with an erection and a strong desire to masturbate. It's scary....I'm guessing my needs/ desires are increasingly not being met by our frequent, yet less than satisfying lovemaking. I'm not sure how to handle this??

Have others been in this sort of situation? How did you handle it?

Re: Life and love with a spouse with chronic illness

Posted: Fri Apr 25, 2014 2:27 pm
by LoveIsSweet
I wish I had answers for you. :(

Here's a thread which you might find applicable: http://www.boards.themarriagebed.com/viewtopic.php?t=61027


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Re: Life and love with a spouse with chronic illness

Posted: Fri Apr 25, 2014 2:34 pm
by maxxim
Thanks LoveisSweet, I did read that thread this morning. It's not simple when changes impact someone you love, and we have to make adjustments too..just add that in our case, our lovemaking is beneficial to DW and helps her with her physical stamina and pain management. I guess I'm grieving for the loss that her physical limitations bring to our shared life and unsure of how to deal with my desires and fantasies.

Re: Life and love with a spouse with chronic illness

Posted: Fri Apr 25, 2014 11:26 pm
by Rescued
Except for the last paragraph about the dreams, I could have written much of that post that you made (excluding the part about my wife climaxing from PIV, and the part about going to counselling). It is amazingly parallel to our situation, which has really changed (not for the good) in the last year or so. However, I just want to encourage you by reminding you that God knows our every wish, our every feeling, all our pain, everything. He has given us the gift of intimacy with our spouse, and I remind myself of that constantly when the devil tries to drag me down with thoughts of how our intimate life used to be compared to how it is now.

My wife and I still have fun with our naughty texts and electronic conversations, double meaning conversations, quick gropes as we pass by each other, lustful glances at each other etc.

All is not lost in our marriage just because things have changed, and I (and you) need to remind ourselves constantly that even though the level and style of intimacy has changed in our marriage, it's still a gift from God and we wouldn't trade it for anything.

How do I handle it?

Occasionally, I have to take care of the desire myself, sometimes when I'm home alone, sometimes with her beside me watching, but always with her blessing because she knows it's needed.

I still marvel at how attractive God has made her to me, even though some days she is not capable of doing anything more than lying beside me. Is it frustrating? Sure it is, but we both know there is some unknown reason why God allows it to be this way and one day we will have the answer from Him. What really helps me through it is her incredible attitude in dealing with it. She is an incredible prayer warrior because some days, her body is not capable of any physical tasks at all, simply making a trip to the bathroom is taxing for her. On those days, she prays like nobody I have ever known, and it's not just for herself but for everyone she knows in need.

There are days when I have to do pretty much everything for her in the physical sense. There are days she can't drive, days she can barely get out of bed when I have to bring her a glass of water, rub her back, neck, shoulders etc in an attempt for relief. Do I complain about it? I'm tempted to but I don't because complaining about having to help would be complaining that I am healthy and able to do these things. It occurred to me a few years ago that complaining about our situation would be the same as complaining that I am blessed with good health.

She WANTS to make love with me, and that is most important.

Re: Life and love with a spouse with chronic illness

Posted: Mon Apr 28, 2014 1:11 am
by maxxim
Rescued wrote:.......All is not lost in our marriage just because things have changed, and I (and you) need to remind ourselves constantly that even though the level and style of intimacy has changed in our marriage, it's still a gift from God and we wouldn't trade it for anything..........

She WANTS to make love with me, and that is most important.


Thanks Rescued, sad to hear of your situation, but really appreciated you taking the time to respond.

Thanks for the reminder that we still have a wonderful gift from God to enjoy - its just that we have to enjoy it differently than either of us expected we would need to. Like you I am also so glad that my DW still wants to make love with me and I with her.....its adjusting to the changes I think I'm finding difficult. In my head things "should" be different.... in reality....I have each day to let my wonderful DW know she is loved, and find mutually acceptable ways to deal with mu sexual needs. More conversation with DW needed methinks...

Re: Life and love with a spouse with chronic illness

Posted: Thu Apr 20, 2017 9:53 pm
by maxxim
It has been a while since I posted..i have been fairly down the last few weeks as I adjust to the changes in our lives. I have come to realise that i am sad through grieving with what some call "unrecognised grief". Its things like the loss of intimacy, the loss of the ability to do things together like not even being able to take a walk in the park or enjoy an ice-cream together.. the impact of caring - working from home means more isolation for me - i have no friends and DW is my sole companion, but spends half the day sleeping - yet I cant go out for more than an hour....I love her dearly but somthing has to change for me to be able to cope.. we still seek to ML a couple of times a week and this usually ends with me needing to masturbate while she cuddles me after brief PIV and my helping her orgasm with a toy. Im feeling isolated, sad, depressed, frustrated and confused. A couple of times I've said i need to go out for a while and she has questioned my need to do so. Even at church I dont feel like I have any meaningful connection with others... please pray for me..I need to find some balance and positive input for me so I can continue to care for her.

Re: Life and love with a spouse with chronic illness

Posted: Thu Apr 20, 2017 10:40 pm
by Rescued
I just re-read all the posts in this thread. I am amazed at how identical our situations are, right down to our age.

I don't have any specific words of encouragement for you other than God knows your entire situation and He is right there with you. I have never known Him to fail me when I've needed strength for the day.

I tend to be an optimist. I've told my wife many times that I can deal with her physical restrictions much easier than if she was carrying baggage that she had to deal with on her own, because in that situation there is nothing I can do to make it better. At least with her pain and fatigue I am able to care for her, do things for her, just be there for her when she needs something. Is it a burden? Not really, because at this point I am very healthy and am able to do what is required, whether it's household chores, driving or whatever.

Is it frustrating that we can't go for walks together ever again? You bet it is, we'd both love to do that. Does it hurt to see her suffering in pain? You bet it does, I wish I could take some of that pain to give her relief from it.

I'm not sure how to address your problem with not having friends. I don't have any really really close friends but a have a number of friends who I can occasionally do some sort of leisure activities with a for a few hours which I do enjoy.

I have made some internet friends through a hobby of mine, and have even managed to meet a few of them in person. I don't know if you have a hobby but you can be at home where you are needed and still partake in a hobby thanks to the internet.

I sometimes just tell myself that this world isn't forever, my wife's suffering isn't forever and although it seems like a long ordeal right now, in the grand scheme of things it's a blip on the radar.

Re: Life and love with a spouse with chronic illness

Posted: Thu Apr 20, 2017 10:49 pm
by SeekingChange
Maxxim, I read and I prayed. I am praying for hope and for strength so you don't grow weary. I do pray God brings you a friend. I have found some of my closest friends through the Internet, don't underestimate that avenue.

Re: Life and love with a spouse with chronic illness

Posted: Fri Apr 21, 2017 10:01 pm
by maxxim
Thanks for your responses and your prayers - they are greatly appreciated. I know there are no simple answers, but sometimes I just feel so restricted. I am active in a FB group of folk with a common interest in pets. I have some "friends" there, but it is not the same as spending time with regular people face to face. - even to just catch up briefly with another person for a coffee would be wonderful sometime. It's Saturday afternoon here, the sun is out and DW is asleep...so here I am at TMB .... :(

Re: Life and love with a spouse with chronic illness

Posted: Sat Apr 22, 2017 5:43 am
by SeekingChange
Do you go to church? Can you join a small group there?

Re: Life and love with a spouse with chronic illness

Posted: Sat Apr 22, 2017 7:02 am
by maxxim
Yes we are regular at church... Lots of acquaintances but no real friends. We attend and then leave. Small groups just don't work- no men's groups during daytimes and we don't go out nights. Sorry not meaning to be difficult, but church doesn't seem to meet those needs.

Re: Life and love with a spouse with chronic illness

Posted: Sat Apr 22, 2017 6:54 pm
by SeekingChange
I don't see you as being difficult, and I hope that you can take my words, not as accusations or as mandates, but just thoughts and ideas for you to consider. Being that I have no clue what you have done or haven't done, I am just throwing something out for you to pray about for you to decide whether to take it or leave it.

Here is what I have done when seeking out another, whether it was someone to keep me accountable or someone to serve alongside or even when I was just alone and needed a friend and I needed to know I wasn't alone... I prayed. I started praying for my need or desire, and I started watching. Sometimes it required waiting, to allow God to bring someone to me, and other times it required me going out and seeking. Church or small groups may not be the perfect setting for relationships to just naturally fall into place, but it's a great place to start watching people, and praying over people and whom God may what you to ask to become a part of your life. He can lead you to the right person for you to start meeting with. Yes, it might start out more formal for something like counsel, support, or accountability, but relationships like that can often turn into friendships. I will say, that God has often used other people, but I have also had those times throughout the years where I have heard, "My grace is sufficient." or "I Am all you need."... and God Himself is my friend, my confidante, my counsel and teacher. God's character and faithfulness makes me confident that He will do the same for you.

Have you checked out any kind of support groups? My husband's uncle is part of a support group that is about living with chronic pain, could there be something like that in your area?

Re: Life and love with a spouse with chronic illness

Posted: Sun Apr 23, 2017 7:07 pm
by maxxim
Thanks Seeking Change, I appreciate your responses.
I am feeling a lot better today - I will start praying for the person/ people/ group that God may have for me to connect with.

I'm also hoping to have a good talk with my DW tonight to let her know something of what I am trying to manage.
Please pray that she will not be offended or become defensive / blame herself.

Deep down I know that whatever the circumstances that I am so completely loved by God.
Thanks.

Re: Life and love with a spouse with chronic illness

Posted: Sun Apr 23, 2017 7:45 pm
by SeekingChange
I will be praying.

Lord, we pray right now that You will speak through Maxxim. May you give his wife ears too hear and eyes to see. Prepare her heart so that she can receive the truth. We bind the enemy who will try to bring confusion, shame and accusation with his lies and deceptions. Holy Spirit we invite you to come in and bring your truth and clarity of mind. May there be love, joy, peace, hope, encouragement and unity come out of this discussion. May Maxxim and his wife, keep their eyes fixed on Jesus, the Author and Perfecter of their faith, may they always consider Him, so that they do not grow weary and lose heart. In Jesus Name, so be it.