I don't need support as such with this, but this area seemed the most appropriate place to post.
Does anyone else wonder about the impact of their disease on their partners? My husband was up in the middle of last night & told me he'd dreamt I was at the bottom of a ravine, all bloodied, and he couldn't reach to get me out. Seriously, my PsA is not that bad! I don't suffer much, it's the chronic nature of the thing that gets me down, and there are so many ways in which I'm not much fun any more. And when I do get pain and yelp or swear, I can't always be bothered to tell him that the pain doesn't last ... so he's sort of left with it after I've forgotten all about it.
He had a stroke years ago - and fully recovered thank goodness. But for a short while his personality changed a little, the sense of humour went AWOL for example, and I felt suddenly lonely around him. My sense of humour is still the same i.e. inappropriate usually, but it must be a little lonely for him without his 'pal' to help him knock down walls & trek across country with or beat him at tennis. I'm encouraging him to get out and do such stuff without me sometimes. Or maybe I should just buy a rope ladder for those pesky ravines.
I think it is hard on partners at times. They sort of get lost in the shuffle sometimes don't they? I do not have a cure but I have encouraged my husband to go to camp with "the boys" when ever he can though none of them have been hunting there in years. They all drink some beer, talk a bit and hit the hay by 10! I guess we are all aging! I also ask my husband to accompany me to church. He would not go on his own so I tell him I need some help. They have a very active and friendly men's group which I am hoping he will get interested in. I also have been encouraging him to take up fly fishing which he is enjoying and really suits him. None of this is totally altruistic. I enjoy time alone, and use of the remote now and then, and sometimes when he has interests of his own it sort of breaks up the habit of hovering. I also make sure ny husband is included now and then with the plans I make with my doctors. He does not come to every appointment but when he does I make sure he has some input and his point of view is heard and valued.
I do think a rope ladder would be simpler sometimes! But just as we are frustrated with the ebbs and flows of PsA at times I am sure the "dance" is tough on them sometimes. "now she wants some help and then she says leave me be!"..........
I thought my husband would want to know what is going on.
Apparently, not so much. We have a very honest relationship and just because he is tired of hearing about the disease, it doesn't hurt me, he cares, it just wears him out.
When we are alone together Psa dominates the rest and there isn't room for some of the more pleasant things in life. I think it may be good to keep it to myself.
He knows how bad it is already. I might actually get lost in some of the better things in life. At least I could spend more time talking about those things.
And, like you guys are saying he might find things that he can do with and without me.
So that's my new plan, I am planning on being less selfish. Here's hoping I can do it. And I am glad we can talk to each other, here.
We really should give as much emotionally to the people who love us because they are also so affected, this disease is not fair to them either.
This is a great discussion. Our partners react in so many different ways to this disease, it seems!
I find it difficult to find the right balance with my husband. I'm usually not one to complain about my chronic pain, difficulty moving, etc, but find if I don't say much about it, he "forgets" how bad it is for me. On the other hand, if I complain too much, he tends to tune it out! LOL He can usually gauge how I'm feeling by how much and what I'm able to do.
This is a great discussion! I think back to our early days when I broke out with psoriasis really bad. I remember how he applied the cortisone cream on my back--which was completely covered. He was so kind to do that for me twice a day. And, weirdly, once it went away there, I haven't had it on my back since! Over the years I never really talked about my psoriasis-only close family know I have it-its always hidden. I would go to doctors as infrequently as possible-just as necessary to get my scripts renewed. Recently, tho, to get some UVB light therapy, with no results. But my husband has so many of his own health issues, he doesn't want to hear about anyone else's-including mine. I have a son and three daughters--two daughters are RNs. The older one loves being a nurse and is a very good one, but she does not like hearing any complaining from me. She works in a hospital and sees some pretty awful suffering, so that has hardened her. The younger daughter works for a dermatologist. She is so sympathetic towards me--even tho she has seen pts way worse off than me. I try not to bring it up to her much. She's all excited about planning her wedding coming up, and I want us to focus on that. So, that's why I'm so active on here-it finally feels like there are people who can relate. My husband is very private and doesn't like talking about personal issues-and not much of anything else. He would never join a site like this! Anyway, you guys are my saving grace and I will forever be grateful for all the help you've given me!
I look back on living with a husband who, to all the world, looked like he was wonderful when in fact he was mentally and psychologically abusive. He would look at my P with disgust, and made me feel a useless lump (this was before diagnosis of PsA). I emotionally shut him out so neither of us dealt with this thing in a good way, and yes I must have been hard to live with.
Move forward 5 years and my new partner is so easy going he takes it all in his stride, but I am very aware how good it is now, that I do check I don’t moan too much. We work around issues of pain and fatigue interrupting plans, and he’s good at reading me, but I think honesty is the key. I was diagnosed about 6 months into our relationship and we sat down and discussed what it would mean to us. If I’m a pain in the bum he’s got to tell me and if he’s not listening to me I tell him too and it seems work. The one thing that used to bother him was when I wouldn’t let him help me (Miss Independent) but he knows I’ll ask if I need it. His sons are very active so we’re content for me to sit on the sidelines while they do the things I can’t.
I think the point about men coping better with doing the practical stuff as apposed to the emotional is very true in a lot of cases, but men need to know they’re valued and loved just as much as women do, I never let him forget what he means to me
My husband is supportive and caring - lucky, lucky me! He tries to stay informed with the latest developments about PsA and any new drug treatment options so that we can discuss them. Although, I sense that he is relieved to go to work and have other things to occupy his mind and energy, and I don't blame him one bit.
My contribution to this discussion is a bit of a sensitive one. How are others handling their intimate relationships?
I try to be agreeable, but mostly I just find myself struggling to endure sex. I am pretty sure that medications I take for this disease, and my ever present companion of pain, are the biggest contributing factors to my non-existent libido as I have not had problems enjoying our intimate relationship in the past. We will have been married 40 years come August, and have a wonderful life and companionship. I don't want him to turn away from me, emotionally or physically, because of this difficulty on my part.
My husband is very supportive. He helps around the house and yard. He does get down though for he had a certain dream for us and he is trying to figure out how we can achieve it. It has to do with traveling. Right now our traveling revolves around going to our children’s activities and he does all the driving so I cannot ask for more.
I do though wish he would pick up a hobby so he can have some time with the guys. Bring around me all the time is not always rosey!!
Thanks for your insights sybil! Work to be done, for sure:)
sybil said:
I sort of regretted it the last time I spoke personally about this on here, but I've just watched a television news item in which some lovely people in their 70s and 80s spoke frankly about their very active sexual relationships. So at 58 I now realise I'm a young strip of a thing who should talk about this stuff quite freely!
I too found libido at an all time low and wondered why. The menopause gets blamed for just about everything and I also assume PsA and / or the meds are responsible for any physical or emotional problem unless I have solid evidence to the contrary. So basically I thought that was it, but I was wrong. We've done a lot of talking, just like we've always done, but it was as if we had to sort of break through the pain barrier and discuss things on a whole different level and that took time.
For me, I think seeing sex as something to be endured was at the heart of the problem. I realised I'd been really frightened of not having sex because it's always been such a big part of our relationship and also because it felt like a bad case of life getting ever more boring. I started to at least contemplate not doing it, ever, unless I wanted to. And we proceeded with, well, extreme caution! I've no clear answers of course, but what we discovered was that pressure, even self-inflicted pressure, was the biggest anti-aphrodisiac ever for both of us. And changing the mindset took time but 'things' are so much better now!
There again, could just be that my disease has settled down a bit, it may be that simple. Keep thinking and talking your way round this with your husband though, one way or another you'll find your way through this patch.
psghetti said:
My contribution to this discussion is a bit of a sensitive one. How are others handling their intimate relationships?
I try to be agreeable, but mostly I just find myself struggling to endure sex. I am pretty sure that medications I take for this disease, and my ever present companion of pain, are the biggest contributing factors to my non-existent libido as I have not had problems enjoying our intimate relationship in the past. We will have been married 40 years come August, and have a wonderful life and companionship. I don't want him to turn away from me, emotionally or physically, because of this difficulty on my part.
This discussion got even more interesting! Let's talk about sex!!! J/k !!! No, but really you guys all seem to have really good marriages. Mine is definitely not the best. We've stayed together through so much-we are somewhat of a mismatch, but did end up with 4 nice kids and 5 nicer grandkids! I think we got a weird start--I was too young (19) and too immature for a serious relationship. We waited 5 years to start our family, so at least we (or I should say "I") was ready for kids. I broke out with psoriasis just a couple years after we got married--I always thought it was from the stress of quitting smoking, but the stress of our relationship sure didn't help..........................................I just decided to delete a lot of what I wrote because it doesn't matter. I will say, sex was fine until menopause/same time PsA started giving me more trouble. It's harder to get interested partly, too, because of my self-image and how I see him. Bla. I do preach to my daughters that sex is a very important part of marriage and don't think that once you have a couple kids you shouldn't have to do it anymore, and you should genuinely like it. If that's not happening, get counseling!!! Gee, I hope we don't have young ones on this website!!! Or, censor!
One thing I forgot to mention. Psghetti, it is hard to get interested when pain is interfering. And with back pain it's downright scary! The funny thing is, last time we did it my hubby hurt his back! That's actually not so funny. I think he's scared to do it now-the table has turned!
I also started married life very young - 2 weeks before I turned 18, and everyone predicted that it would never last. LOL.
AND with peri-menopause my disease really ramped up.
AND I have recognized that my self image has gone down hill because of the ugliness of this disease and its treatment methods. (I am blessed to not have skin psoriasis but have issue with my skin feeling severely 'sticky' and untouchable, and do have severe PsA and nail involvement).
AND you are so right about pain interfering with sexual desire. I try to time using (hydrocodone) pain med's to help make our intimate time better with less pain, but sometimes even that doesn't help.
AND I have also preached to my daughters and sons (5 in all, and 9 amazing grand kids) that a good intimate relationship helps strengthen a marriage for sure.
Thanks for sharing all our similar view points:)
Grandma J said:
This discussion got even more interesting! Let's talk about sex!!! J/k !!! No, but really you guys all seem to have really good marriages. Mine is definitely not the best. We've stayed together through so much-we are somewhat of a mismatch, but did end up with 4 nice kids and 5 nicer grandkids! I think we got a weird start--I was too young (19) and too immature for a serious relationship. We waited 5 years to start our family, so at least we (or I should say "I") was ready for kids. I broke out with psoriasis just a couple years after we got married--I always thought it was from the stress of quitting smoking, but the stress of our relationship sure didn't help..........................................I just decided to delete a lot of what I wrote because it doesn't matter. I will say, sex was fine until menopause/same time PsA started giving me more trouble. It's harder to get interested partly, too, because of my self-image and how I see him. Bla. I do preach to my daughters that sex is a very important part of marriage and don't think that once you have a couple kids you shouldn't have to do it anymore, and you should genuinely like it. If that's not happening, get counseling!!! Gee, I hope we don't have young ones on this website!!! Or, censor!
Sybil, I have been lurking on this discussion and it is wonderful that you started it.
My husband does not get enough credit. Period. I was diagnosed right after we got married, and he has spent the better part of two years taking care of everyone: myself, three boys (17, 13, & 9), the dog, two cats and six chinchillas. It was all I was able to do to get through the work day, and He was stuck with the rest. I can’t possibly list all of the responsibilities that he was saddled with for the last 18 months. I say 18 months, because, luckily, I have begun to feel better with my medication regimen, and didn’t need to be sick for the FULL first two years of our marriage. (Time off for good behavior?) Anyway, this disease almost killed us. While I was so miserable, I couldn’t see it, but this disease slowly but surely sucked the spark out of my husband. He is a wonderful, gentle, loving, brilliant, and unique human being and my illness took so much away from him. This has made me feel so guilty. Even though I am feeling better and contributing like I used too, I still feel guilty. I need to get over it though, because that guilt of mine is making us as far apart as we were when I was miserable, and I am so lucky to have this special man in my life. I don’t know what where our family would be without him.
We have managed to keep up with our intimacy. It has been difficult, but I never lost interest. He sometimes didn’t know how to approach me anymore, and I had to tell him to “keep trying”. He would try to judge my pain level in order to know when to approach me, but he never got it right. ;-P". So, I told him to just keep trying. Sometimes, it would be a hit, and sometimes not so much, but it let me know he still desired me. That helped us a lot.
Keep trying! Good advice in all areas of our lives:)
GrumpyCat said:
Sybil, I have been lurking on this discussion and it is wonderful that you started it.
My husband does not get enough credit. Period. I was diagnosed right after we got married, and he has spent the better part of two years taking care of everyone: myself, three boys (17, 13, & 9), the dog, two cats and six chinchillas. It was all I was able to do to get through the work day, and He was stuck with the rest. I can't possibly list all of the responsibilities that he was saddled with for the last 18 months. I say 18 months, because, luckily, I have begun to feel better with my medication regimen, and didn't need to be sick for the FULL first two years of our marriage. (Time off for good behavior?) Anyway, this disease almost killed us. While I was so miserable, I couldn't see it, but this disease slowly but surely sucked the spark out of my husband. He is a wonderful, gentle, loving, brilliant, and unique human being and my illness took so much away from him. This has made me feel so guilty. Even though I am feeling better and contributing like I used too, I still feel guilty. I need to get over it though, because that guilt of mine is making us as far apart as we were when I was miserable, and I am so lucky to have this special man in my life. I don't know what where our family would be without him.
We have managed to keep up with our intimacy. It has been difficult, but I never lost interest. He sometimes didn't know how to approach me anymore, and I had to tell him to "keep trying". He would try to judge my pain level in order to know when to approach me, but he never got it right. ;-P". So, I told him to just keep trying. Sometimes, it would be a hit, and sometimes not so much, but it let me know he still desired me. That helped us a lot.
