[angieb]

Hi all
i have finally plucked up the courage to post this. Ifeel really sorry for my husband. we used to have a really good sex life but over the past two yrs it has slowly dwindled to nothing. once every two months if he is lucky. the thing is i am so tired all the time (or in pain ). I feel as if he is being the most patient man in the world. I am probably being silly (thats why ihave only just posted this) but if anyone has any ideas how i can recapture a little of the spark i would be gratefull.

 

[silver star]

Hi angie,

I totally understand where you are coming from, I have the exact same problem.

I will have been married 25 years this August and I feel my husband has just given up trying following the amount of knock backs he was getting. By the time Ive made dinner Im ready to sleep and its a supreme effort to get off the settee and go to bed where i just want to close my eyes and not speak or think but just dissapear into oblivion. For me its the guilt that I feel and I do miss the closeness. I have Lichens Sclerosis as well so that doesnt help.

Im sorry you were asking for help and im just giving you my tale of woe!!!

Just wanted you to know you are not alone in this situation.

Take Care.
X

 

[Utilisada]

Hi Angie,

It is good that you now feel able to talk about this on here and I am sure you will receive some helpful advice.

However, have you been able to talk to your husband about it? - This is something you MUST do - tell him how you feel - you may just be feeling 'guilty' unnecessarily?

Remember, we all have different levels of 'need' with regard to a physical sexual relationship - If you have 'closeness' in other ways, i.e. mentally and emotionally, this could well be enough - you need to talk to him and discover both your 'needs', then work from there.

My husband and I have been together for more than 40 years now (I am only in my 50's though, it's just that I was a 'child bride' !! Tee hee!). We find that our relationship is just as strong and happy as it ever was but that the things we share which bring us pleasure have changed in their levels of priority - family, looking after grandchildren, looking after each other, sharing conversation, sharing laughter, etc. etc....

I hope you get some helpful answers to the question you have asked but do first discover together with your husband what, if anything, is actually needed, then work towards this one step at a time, together.

I hope this may help in some small way,

Best wishes,

Dea x

P.S. to Silver Star please.

I too have just been diagnosed with Lichen Sclerosis - you are right, it does NOT help!! - I put a message on the 'symptoms' board asking for info on this and wonder whether, when you have time, you would be able to have a look and perhaps share any info you have on there? - I would be interested to know if yours is in any way related to your Lupus?

Apologies Angie for momentarily highjacking your thread - I hope you don't mind on this occasion.

Very best wishes to you both,

Dea x

 

[sam101360]

Hi:

I think you will find that for us this is a common concern.

I have been married to my hubby for 24 years and we have been together for 26. Our sex life has been a bit up and down, always me who isn't up to it.

We did discuss the situation, as there were several issues:
Exhaustion
Pain
Dissastisfaction with my weight (I felt fat and ugly)

Exhaustion...we deal with that by me not doing the cooking on the day I would like to be intimate...I get to judge how I feel in the morning, rest if necessary. It's spontaneous enough for him...cause he doiesn't know till dinnertime.

Pain...If I am in a great deal of pain and I take extra pain killers to alleviate the pain, I am unable to enjoy the intamacy as I cannot get there...I usually give him the option...tell him I have taken the pain killers, but I don't mind if we are intimate anyway...that way he has control if his need is present we mess-around without well you know.

As to my weight, that was a me issue...he understood and told me that I was beautiful to him and that he loved me however I was. That I still turned him on and that I was being silly and depriving us of a vital part of our relationship. He offered to diet with me or walk more if I felt it was that big of an issue. We walk together every evening with the dog, holding hands, it's funny but this has brought us closer too.

This may not work for you, your issues may be different, your husbands desires may also be different. But if you do not discuss it with him, how can you ever come to a soultion that works for you both and for your relationship?

By the way...I now find that I look forward to this, it's not every night like it was when we first started out (but nothing ever is) but it's at least once every week to ten days...not bad for a sick old fart.

Stephanie

 

[Katharine]

Hi Angie,

I think that this is a problem for many people here and one that is rarely touched on.

It is a painful subject and one that leads to so many feelings of guilt for many among us.

The previous poster is right when she says that you need to talk about this. Husband's can be amazingly understanding when given the chance and can sometimes make things possible by removing some of the stress and also the actual physical demands such as preparing dinner.

I am lucky in that I still have plenty of "desire" but I do have trouble physically, as in muscular trouble (I also have polymyositis) and it may sound hilarious but holding any position, even the most classical is kind of hard :blush: Luckily we can laugh about this. In the beginning I actually found I was avoiding sex so that he wouldn't be disappointed by my "lack" of physical participation. I then realised what was happening and told him that that was how I felt and the actual problems I was having.

I'm very lucky in that I work at home, at my own pace and I rarely cook. My husband is the cook in the family. I also don't get any funny stares or criticism no matter what time of the day I disappear off to bed. In that way, I can "gain" some energy by taking a good long nap in the afternoon. I'll take a nice bath/shower, wear something that makes me feel good (sexy) - I don't care how casuallly I might be dressed, I love nice underwear...

I also make sure that even when I really don't have the energy I will cuddle close and make sure there is a lot of contact. I have ordered my husband to ignore how I might look like I feel and to still make advances (he's a very gentle man so I don't feel as if I'm pushing him away if I just can't).

I will also do daft things like kidnap him in the middle of an afternoon if I'm feeling less tired then (of course we're lucky to not have the kids one week-end in two...). Sometimes a week)-end morning is a better time. It's really a case of go with the flow. Removing stress is very important.

ALSO, all that said. It is something that you can talk to your doctor about. As well as the disease itself, some meds decrease libido. These things can be worked on and I think are very important - and that's not just for hubby!!

just a few thoughts,
Katharine

 

[LolaLola]

I have just briefly posted about this on another thread. I have real problems mainly due to joint pain, joints that dislocate or subluxate easily and currently a very hefty gynae problem. To be honest I have to say , seems like many of you are doing better than me at this.

Just a small piece of practical advice, some of the reputable organisations dealing with chronic pain have advice sheets on this topic. I think Pain Concern may be one you could google.

Also there was a good book on Chronic Pain, the Daily Telegraph Chronic Pain Guide. Still available I just looked on Amazon. As well as advice on all aspects of Chronic pain including your sex life, it also has a good range of gentle exercises which most of us should be able to manage a few of.

I used to Chair a Chronic Pain Support Group, but am a little out of date with things now.
x lola

 

[onetay]

angie,
I am sorry I can't help you in this area as well to be honest with you I would not have another man in my house if it ment the cure for lupus lol. Every man I have ever been with is a cheating .... well that is another story. I do wish you the best in finding your answer and hope that you feel better soon.

 

[Ali3]

Hi Angie,
Just wanted to say you are so not alone with these issues !!
My wonderful husband is so incredibly patience in that department !!
we have not had a sexual relationship for the past three years although we are very close in every other aspect of our relationship.
I do feel incredibly guilty at times but i hope things will improve as i get this god dam illness under control !!
I was diagnosed with lupus a few years back and my health has been pretty awful since then !!
We use to have a great sex life !! But we have come to realise that sex isnt everything and closeness, cuddles, reassuring hugs, a good foot rub (!!) counts for alot in a relationship !! We have been married for 23 years and im sure this helps in this unfortunate situation !
Please dont feel guilty about your circumstances.
Im hoping one day to get that extra sparkle back in my relationship, but for the time being doing the best i can giving what the lupus throws at us !
All the best.
love and hugs
Ali x

 

[goats]

good questions

Although I have been single for a long while, I know what you are going though. a few of the things I found that helped was to TALK to your husband as much as possible. sometimes simple conversation can be sexy and wonderful and help to release the tension you feel,

what about a nice body rub that you husband is able to give you .
it doesn't always solve your husband problems .but the closeness is nice
how about what we used to call a mental health day, when the kids where in school and we stayed home in bed all day, watching movies and eating , sleeping. the closeness again helps, a bath tub for two

little cards under his pillow telling him how much you love him and care. little special things shared are the best sometimes.

it sounds like your husband is very loving and more the willing to wait till you are ready,
it is very hard to have a chronic illness and a family. we always feel guilty.but when you talk to family members.the dont always see it the same way.

just a few thoughts early in the morning
best wishes
goats

 

[cad]

HI Angie,
I understand your issue heer and those that other have raised too.
I feel very guilty as well as I am up to it much at the moment. Lie you I would say once every couple of months if my husband is lucky.

I agree with all the recommendations that everyone has made as it is what works for you at the end of the day but I think it is important to try and explain to your husband why and convince him that you are not rejecting him.

I think my husband has felt this at times as I have only become much more unwell over the last year, but he is gradually beginning to understand. And yes everyone is right abut intimacy in other was too! Making some quality time and cuddling up. I love that suggestion about the mental health day me and my husabnd are alwys saying that we wish we could do that but with 5 kids there isn't much chance, well maybe when the little one starts school!!

Just like everyone has said I will emphasise that you are not alone and this must be a cery common problem for people with chronic illness.


Good luck and I hope you manage to find a solution that works for the two of you.

Take Care

Cassie

 

[Blackhawk]

Hi Angie,:wavesmile:
First off I am not sure what all we can & can't say here so if my post needs to be edited then plz do so.

I am so sorry to hear that ur having this problem.I know exactally what ur going through.It has been a year & a half since me & my SO have had "sex".Even though I am 18yrs younger than he is I am the one w/the problem.He has been incrediably patient & understanding.He says that he is afraid to try & start anything because he is always worried about how I'm feeling & how much pain I am in so he just doesn't say anything.I have even told him that I would understand if he "needed or wanted" to go & get what I can't give him from someone else as long as he came back home to me & tell me that he has done it.He said that he would never do that because he loves me & it just wouldn't be right.I think we all feel guilty that we are sick & not able to do these things.My SO & I have been together for 8yrs & I'm just thankful that he is an "old man (48yrs old)" & is so understanding & patient w/me.

What I do when I am feeling like it is "pay" him a lot of attention(if u know what I mean) :blush2: & that helps a lot.I don't know if that is something that u would be willing to do but I know that it does help us.Another thing is trying different positions which help take the pressure off of u & is more comfortable for u.You need to make sure that u use a lot of lube because those of us who are sick tend to need extra lubercation.There are ways to be intaminte w/o haveing intercourse & that might be something that u could try.Another thing that I have done is taken some extra pain meds & muscle relaxers before hand & not tell him & then go to him that way I won't have as much pain as I would if I didn't take them.I just do the best that I can & pray that it is good enough.Try to do something romantic like a candle light dinner or draw a bath for 2 w/candles & bubble bath.One thing to remember is that the "little" things mean just a much if not more than anything else.

I think that communication is an important part of a relationship & that it will help if u are able to talk openly & honestly about ur feelings & what ur thinking.I'm sure that some of the meds ur on are decreasing ur desire for sex but I know there are some new meds out for women just like there are for the men w/their viagra.My docs have offered to give them to me if I wanted them.I just don't want to add another med to the list.I agree w/everything everyone else has said as well.You are not the only one that feels this way or is in this situation.I have been going through this for a very long time but just haven't talked to any one about it.I've come to find that it takes a wonderful man to be w/someone who is sick like we are.I know I sure am blessed.I wish u luck & know that ur not alone.I'm sure that things are going to get better for the two of u.

Doc

 

[cgintegratek]

Nothing to worry about

HI

I have just read through all of your replies and threads, and just wanted to let you all know that you are all extraordinary and really strong for the things you go through as lupus sufferers and still have the thought of your fella's, i am 25 years old and have been married for just gone 12 months, we found out that my wife had lupus after our second baby girl, and WOW its tough, we too had a very active sex life that like most of you, has dwindled down to once a month or so, its so frustrating for both parties as we as the partner cannot always sense that our loved one may be having a flair or really bad day, and i cannot recall the amount of arguments it has caused, but i am so proud of my wife for the strength she has every single day, and you all should be as proud also, sex is a massive part of most peoples relationships, and from my experience as an outsider looking in, sometimes the last thing on your minds is sex, your partners probably deep down understands fully, well done all of you, you are all amazing and deserve medals!!!!

P.S anyone with any tricks of the trade to help overcome this little issue feel free to let us know? ha ha.

 

[iksyfaye]

Hi Angie,
Add me to the ones who can totally relate. I also have Lichen Sclerosis, and Chronic Interstitial Cystitis (IC-bladder disease, bladder lining is defective/gone...have ulcerated sores that bleed in my bladder...also very small bladder...feels like a UTI, only no infection...and like hot burning salt being poured on an open wound...eeek...), in addition to the recent SLE and Sjogrens diagnoses.
Anyways I have been married 26+ yrs...hubby is wonderful...but I feel so bad, too...I actually have ordered several books about dealing with intimate issues when one has chronic pain/disease, and we both read them...and try and remember that intimacy also includes talking, hugging, closeness, more than just what may be physically not feasible...I can only say honest talk is so important...hard, but important!...Don't get me wrong, I struggle with it still...Hope this helps some...
I

 

[Bobby]

Hi Angie,

I have to come at this from a totally different perspective. I got out of a 20 year relationship when I found he'd been married for the last 9, lovely bloke eh! I then had a really really good relationship but then along came the lupus (now UCTD).

I have to say, I pushed him away. I was always tired, sore, in pain, felt decidely fat and ugly. I felt so guilty for not being there for him, and myself, even though he continually told me and showed me, it was like I didn't think I deserved someone that nice. The calmer he remained, the more angry I got, till I finally told him, in not the pleasantest of ways to leave me alone.

I haven't been in a relationship since then, 2005. What I miss the most is the cuddles, the conversations, the little looks, his smile, the warmth we had between us, yes and even the intimate part of the relationship. And those candle lit bubble baths followed by head and feet massage....ohh I'm an idiot.

I think if you are fortunate to have someone who knows who the real you is.... flaws , warts and all and they still love you as your husband seems to, then you owe it to yourself and him to find a way. I'm sure you will.

Lupus is tough on it's own, but luppy and lonely is not where you want to be.

I saw him a few weeks ago, and when he told me I still look amazing.......I forgot all about pain and could have eaten him with a spoon.

Don't forget...there's more than one way to skin a cat :wink2:

I really hope you can work it out.

 

[Swizzle]

Have just read all your posts on this subject and it has brought me to tears only because I can identify with a lot of the things posted.

I am a 25 year old woman and was diagnosed with MCTD lupus variant 18 months ago and have noticed a real decline in libido etc over this time and also the year running up to it.

I was with my (now) fiance for three years before I started getting symptoms which made 'relations' very painful - especially any postion and the exhaustion. He has been an absolute saint during all this and I feel so guilty along with feeling ugly and fat - I put on half a stone because of taking Prednisone which as weight gain goes its not bad - (it has come off now the dose is down to 5mg a day).

It is all a vicious cycle, the worse I feel the less we have sex then it makes me feel guilty and so it makes sex even less likely!

I am getting married May next year and I am actually dreading the wedding night and honeymoon cos what a let down for him! (Although its not like we've been saving ourselves.) The first three years of our relationship was incredibly electric, every night often twice a night, then to go from that to once every two months (if we are lucky) has been a real shock to us, especially as no doc has mentioned it as a possible side effect!

I don't know if anyone else has felt similar but one large part of all this for me has been I cannot look in the mirror and feel attractive anymore. I am back to my normal weight but I still feel very unattractive and 'hamster cheeked' as well as problems with my skin. I find myself always wearing something in front of him for fear he might get ideas if I don't.

All my fiance ever does is tell me how gorgeous etc I am, but does anyone else feel that its a fiance's job to say that - they are biased?! I feel I almost need complete strangers to chat me up before I believe it - which never happens cos I am always too bloomin tired to go out to places where it might happen!

What is it about these diseases and medications that change our self image so drastically?

Oh, also, my specialist and I do not really get on - he is certainly the last person I want to discuss these things with!!

Anyway, just thought I'd share my experiences - especially as I am relatively young to be having these problems - not even married yet!

 

[ATS]

hi all! wow this thread is great, i really love this board, everyone is very honest. i am 33 and living with my boyfriend. we actually have a very good thing going, probably 4-5 times a week, i have to say i put a lot of effort into mustering the energy and trying to rev myself up for it. i don't want to 'gloat' or sound anything like that, because i have totally *been there* on the opposite end of this spectrum before during periods of my life. but if anyone would like me to be more specific (not like, profane/pornographic though!) about some of the things i try to do to keep the flame going, i'd be glad to share.
-amanda

 

[angieb]

wow

omg i never expected this thread to get such aresponse. thank you all. it makes me feel a bit better knowing its not just me. i have to say i am really lucky to have my husband .