View Full Version : Question about being close with your spouse or significant other!

08-31-2012, 02:31 AM
I am not sure I posted this in the right place. So sorry ahead of time if I didn't. But I am new to lupus and meds and all this wonderful pain and am having issues in this department. I am also sorry if I offend anyone, that is not my intention.

Ok, well to my question.

We all have lupus and we are not dead. My relationship in this closeness area ok well (sex) is having some issues at this moment with all the meds and the pain and sickness and tiredness and everything else that comes with it. I was wondering how people are dealing with this and any suggestions in this area from those of you like me would be great. I still love my sexy man very much and he take such good care of me that I am needing some advice here. I haven't been taking very good care of him, I just all the above too much.

Thank you and look forward to hearing any suggestions or how others are dealing with this.


08-31-2012, 04:42 AM
dear gretchyn i know how difficult this subject is to talk about and i can from my own experience understand both my husband and myself are not well. so adjustments to all aspects of our life have had to change. even couples who do not having illness have this issue at times with there relationship. i can only tell you that with my experience being honest with each other has helped. we discuss these issues and we just tell each other. we love one other but today is just not a good day for me. but that does not mean that i do not love you and do not want to be with you. and we just tell each other when we are feeling good. maybe this is not romantic and maybe we have had to change the way we use to be. sometimes it is spontaneous but sometimes it is just planned . but that is what relationships and love are all about . honesty. understanding . love and comprimise. i have been married to my husband for 29 years. i tell him i love him and that he is the most wonderful man everyday. and how lucky i am to have him in my life. i do not know if this helps. but this is how we approach everything in our marriage with honesty. hugs kim

08-31-2012, 07:36 AM
I've been married 25 years and still find my hubby to be the hottest thing around! HOWEVER, Lupus doesn't feel the same way. (bad lupus! bad, bad lupus!) So we've adapted. Spontaneous? Sure, after the meds have kicked in spontaneous. I'm not as limber as I used to be (pushing 50 so blame that, not lupus) so we find comfortable positions that work well. Experimenting is half the fun! Intimacy isn't just about sex. We just got a reclining loveseat so now we can snuggle and watch tv together. We find things we can do together such as kayaking, which, by the way, can be very intimate depending upon where you kayak! Talk to him and brainstorm about ways you can be close to each other that works well for both of you. Good luck and have fun!

08-31-2012, 07:49 AM
Like everything else in marriage - honesty, compassion, and compromise!

Adjusting to Lupus means that a good night's sleep is the best "foreplay" available - so we've mostly become "morning people". It's not always ideal, but honestly most nights I'd probably just fall asleep mid-way through - no offense to my husband. Most nights I'd fall asleep mid-way through skydiving into a rock concert played in the middle of a construction site. I'm just too tired at the end of the day to do ANYTHING but sleep - I didn't choose to be that way, believe me.

Keep working at it - you'll find a balance....

08-31-2012, 08:52 PM
i have found my instant emotion difficult.

i go from no feelings to full on feelings instantly.
this presents challenges, especially if you rely on feelings alone.

i love my wife, and we have a good healthy relationship.....
but do not rely on the intimate side to guage how your relationship is going.

09-01-2012, 05:57 AM
I agree, it certainly makes things difficult but as long as your spouse is reassured that you still love them and you will let them know when you are feeling well enough for some action. I know for me my husband is scared to death of hurting me so I have to be completely clear when I'm ready! Weve only been married 3 years but he's my best friend and this dumb illness has shown me that he is even more amazing then when I fell in love with him. Just be patient and honest, you will find a balance that works for your relationship eventually, but it helps so much more when your pain is under control!

09-01-2012, 11:04 AM
Oh trust I used to be a night owl and hate mornings they were really super rough. And intimate stuff I have always had problems with and been the lets say wild child in bed. LOl! And now lupus has taken my night owlness away and by the end of the day like most I am exhuasted some call of duty on the xbox and then bed to crash or try to crash. I don't know if I get so tired that I can't sleep or what and in too much pain most of the time to do anything. So sometimes just for my hubbies sake I will take my sleeping pills and get myself super sleepy so I can't feel the pain and say go for it. LOL! I know not the most romantic but sometimes romantic is boring. But you know I miss the having it more than 2 or 3 times a month right now which is odd normally thats ok with me. Like someone said stupid stupid stupid lupus. I hate it. I am so glad to see the responses and how others are handling this. I guess I am just going to have to try harder. Thanks everyone!


09-02-2012, 09:52 PM
thanks for asking this gretchyn! And thanks for the responses. I've been wondering if I'm alone in this area too. I feel so bad for my hubby and althought we've been together 7yrs, we just got married in june...it shouldn't be this way! But I love him so much more now...he married me, knowing what we are facing<3

09-03-2012, 09:00 PM
Love this post!

09-04-2012, 01:29 AM
My husband and I have known each other since 04 when I met him in Iraq online yahoo personals but we have only been married 4 years and together 4 years. I also feel so very bad for him. We had no clue this was going to happen. But I am so very thankful to the Lord for bringing us together. I don't think anyone would take as good of care of me as he does or worry about me as much as he does. I couldn't make it through this without him. POOR GUY!


09-04-2012, 05:12 PM
My wife and I have been together for 17 years-it hasn't always been easy,we were both divorced w/ 2 kids when we met and had 1 more soon after.
Between getting all the kids to get along,coordinating multiple sets of inlaws and exs,not to mention money issues etc it hasn't been easy.
I work days and she works 2 nd shift-that way someone is always home with the kids.

Through out all this we have always made time for each other. Now we have just 1 child still at home-but we have 2 big dogs that expect to sleep with us
LOL its always something.

Anyway lupus doesn't help-we are not as active as we would like-but we are happier now than ever before!
Mid day seems to work the best-late evening I always seem to be running a fever and feel like crap and mornings aren't much better-I feel best between 10am and 5 pm.