A sensitive subject

[gemvicki]

I've wanted to post regarding a sensitive subject for awhile, but wasn't sure how to approach it. Rach mentioned it briefly when responding to Pooh's topic "What is the worst thing about SS."

Although not sure how to verbalize my feelings, I'll just delve right in. The subject I'm referring to is my lack of a sexual relationship with my husband. Our sex life isn't totally gone, but almost.

We have a wonderful marriage and always have. He is my best friend, my comforter, my protector, and we've always done everything together. I couldn't ask for a better huband, father to our children, and grandpa to our grandchildren. Yes, sex was always an important part of our relationship. Since I've been sick, this part of our life together has become almost nonexistent. All of you know the difficulty trying to sleep with the wacko body temperature and the horrific pain, not to mention the continually dry eyes/mouth along with getting up several times to go to the bathroom. Many nights I don't even go to bed as my recliner or sofa becomes my bed for the night.

Before I got sick, the greatest comfort of the day was going to sleep in each other's arms. Now, majority of the time, it's hard for me to even cuddle as my body hurts too much. If I lay on my side, my elbows and knees are in tremendous pain. If he gets real close to me, my temperature goes crazy with me so cold I'm shivering one minute and sweating the next. I miss our cuddling so much and I know he does too.

He doesn't complain. He tells me everday he loves me and gives me loving hug. He tells me everday I'm his "pretty lady", a pet name he's called me for over 30 years. When I bring up this subject with him, he tells me it doesn't matter. He tells me what does matter is all our years together, our closeness, friendship, and love. He tells me we are growing old together and what makes our relationship special is lovingly accepting the good and the not so good. He tells me he will always be here for me and I know he will. He tells me I am the most important thing in his life and helping/taking care of me is a part of his showing his love for me. He also tells me he knows I will always be there for him and a favorite saying of his is "My time is coming....and you'll be here for me."

I feel guilty much of the time because I'm sick. The burden he carries is tremendous. He is working a part time job in addition to his regular one just to make ends meet. He finds the time to go with me to my doctor's appointments and helps with the heavy stuff around the house. He even does special things like getting out my decorations when I don't feel like it, building new bird feeders so I can watch the birds, and going shopping with me so he can help. I know he does all he does and puts up with all he does because he loves me. Yet...I feel guilty and yes, I feel sad. Yes, I miss that part of our relationship.

Do any of you have my problem? If so, how do you come to terms with the guilt? How do you deal with this sensitive subject?
Thanks for hearing me out and most of all, thanks for your support. Well, I guess I said what I wanted to say....hope it came out alright.

{{{{Hugs}}}}
Vicki

"Those who have suffered understand suffering and thereby extend their hand."

[LenV]

Vicki,
Yes..it came out alright.  It's a subject close to my heart as I feel the same way and your story could have been written by me and probably lots of others.  These men who love us and care for us are very special and we need to let them know how special they are in every way that we are able to.  A loving touch as you pass him, a special dish cooked for him, actually taking time to really listen to him and making his life as easy as we possibly can.  There are a lot of things we can't do any more but..there are a lot of things we can and we need to go out of our way and make some effort to do just that.  I quietly go to the computer when there is a ballgame on that i know he wants to watch and I could care less about.  I get up to let the dogs out so that he won't have to get up and stop what he's doing.

I really don't know any way to make the physical part any better.  It is a part of our life that I miss so much too.  But I do stop whenever he's standing in the kitchen or den and just put my arms around him.  He needs touch as much as I do.  There are a lot of men who take the vows of "in sickness and in health" seriously and it sounds as if your husband as well as mine really meant it.  We are blessed.

Billye

[Liz D.]

Vicki,

I think all of us who suffer from Sjogrens have at least to some degree the same problem as you, whether it is from the aches and pains/fatigue or the terrible dryness causing pain during sex.  Having a wonderful, understanding husband (like I do as well) is such a comfort, but I understand the guilt too.

I am never under pressure from my husband for this part of our marriage, although I am sure he would like it more.  The one thing I do is make sure I take all my medicines regularly so that there are times that I do have some strength for it.  My doctor has also given me Vagifem.  It is a small dose estrogen that is inserted vaginally to give more lubrication.  (It helps a little.)

But one thing that helped me was when an older married woman said to me that love and friendship is like the main meal of marriage and sex is the dessert.  We all "love" dessert, but we can live without it.  But we can not live without the main food or we would starve to death.  So that love and friendship your wonderful husband shows to you and you for him is really the most important!   And when you do get "dessert", what a treat it is!!  (I am sure every man who happens to read this is thinking they could live on sweets )

I hope I phrased that alright and haven't offended anyone.

Liz D.

[ruby52]

I feel guilt also and my husband is great about helping and understanding my limitations.I've been there for him as well over the yrs. and never did I resent him or think of not staying but when it's you being a burden it's always in your thoughts.I just try and be aware that if I'm having a good day,hour or even minute I spend it by giving him attention in some way.We've found our intimate time together requires  us to sneak off to the bedroom whenever I feel up to it.We're like teenagers disappearing from son and elderly FIL in the house!I don't know your age but when we had three kids growing up alot of Christmas lists were being made behind closed doors.My grown kids still laugh about it now that they are old enough to know better.

[itssue]

Vicki,

You were brave to bring up a topic that I know many of us have wondered and worried about.  I also have a very loving and caring husband.  We have been married for almost 42yrs and he has always been there for me.  I remember when I was younger thinking that when people have been married for a long time that sex would be a thing of the pass and never even thought about, how wrong I was.  I know he misses it and so do I.

I think our fatigue has a lot to do with the inability to engage in sex. There are times I just plan can't even get my mind to want to think about it, let alone do it.  Then of course there's the dryness and pain.  

I am going to be frank here and hopefully not offend anyone.  Intercourse is an act of love that can be so missed, but as we know it is not the only sexual act or way of showing love.  I try to do everything I can for my husband to satisfy his needs, and he for me.  We know that we love each other and if a touch is all that we can do, then that is all we may do.  If I'm able to proceed further than we will. (not going into any more detail)  

I love what Liz said about "the meal and dessert", that is so true.  We are very fortunate to have husbands who truly believe in the vows that they took "to love in sickness and in health".  My husband always tells me not to feel any guilt about anything, he says "we are in this together and that is all that matters"

I hope that my frankness has not offended anyone, but we are all adults and we need to be able to discuss all aspects of this disease.

Sue

[Pooh]

Dear, dear Ladies,
I have read each of your postings, and each time I checked to see if maybe I had written it in my sleep.  We are all truly blessed that our husbands were raised by parents that instilled the love for another in them. 

I have been ill with this disease and all it's "gifts" for more years than I can remember.  The intimate moments between my hubby and I have been sexless since an extremely painful night in 1987.  Never in all the years that have gone by has my husband once complained.  We have been married as many of you know, 51 yrs. almost 52. 

With my ongoing disability becoming worse he has taken over the running up and down stairs, doing the laundry, bringing it up for me to fold and put away.  Putting the dogs out and bringing the dogs in.  Helping with the cleaning of things I can no longer reach.  Transporting me to my ever endless doctor and lab appointments.  Going to family functions alone because I am to ill to go along.  Helping out our neighbor lady whose husband just passed away in the fall.  All of the things that I once did alone. 

Yes, I too carry the guilt you all feel, but I try to remember, that I feel this way because I love him so.  When I'm down and crying about the guilt I feel at him having to do most of these things, he holds me in his arms and tells me how much I mean to him and how he couldn't go on without me.  Yes, we are all truly blessed with the men in our lives, and I thank God every day for mine. 

This is truly a subject we all have been dealing with, and it needs to be shared with those who are feeling the way we do.  It will lighten their guilt a little, as it has ours. 

Hugs and God Bless,
Pooh

[lynnmarie219]

All I can say is that you are all so very lucky to have someone in your life that is there for you through it all. Hold on to them and dont let go  ! I completely understand your concerns Vicki about intimacy as it has been something I have struggled with as well. I have lost my desire for the most part due to pain and fatigue. I did and still do feel very guilty and very odd about this , but thats the way it is for me at this time. That doesn't mean that I still don't crave a gentle touch or hug, but many times it hurts too much and takes everything out of me to go much further than that. And yes...I do miss that part of my life! Unfortunately, I do not have the same support system as you all have mentioned. It sounds absolutely wonderful, and I hope that most of us here are able to find that in our loved ones, spouses, family, and friends...but if not...we always have this wonderful board to come to and find strength, hope and love from all of you that participate here. Hugs to you all!

[gemvicki]

Im crying as I type this....hardly any tears though as I don't have them anymore. My heart is full of emotion because you ladies took the time to open your hearts with your honesty. Reading your posts touched me so very deeply.

You're right Billye, the simple things we do CAN and DO make a difference and we need to make our husbands feel loved and appreciated. Liz, I'm sure you haven't offended anyone as I know they appreciate your words just as much as I do. Thanks for the tip about the Vagifem....am going to mention this to my GP when I see her next week. I took your advice Pooh and am seeing a new one.

Ruby, our grown children tease us as well about all the nights when they were in jr. and sr. high school and we used to go to bed early because Daddy was so tired.
Sue, your words about intimacy are so very true. There IS more to sex than intercourse alone and I thank you for being courageous enough to mention this. You've given me something to think about. I too like Liz's words regarding dessert because yes it is quite special when we can have it.

Pooh, we ARE blessed to have these men in our lives. Yours said he couldn't live without you and it makes me think how I couldn't go on without mine. What you said about our guilt is something I'll take pains to remember when I am feeling sad. I feel this way because I love him so very much. Thanks Pooh!

Lynn, I'm sorry you don't have the support system lots of us are fortunate to have, but you remember this one thing. You DO have us and we DO care and WILL offer any and all support we can.

I've never seen your faces. I've never even heard your voices. Yet I feel so very close to each and every one of you. What a bond we SS women share. How thankful I am for all of you!
Thank you for your honestly, frankness, and most of all the love and caring I feel from all of you.

Hugs,
Vicki

"Those who have suffered understand suffering and thereby extend their hand."

[Debora]

As you all know, you are very fortunate to have such loving husbands, not only husbands but best friends.  Something like that love doesn't happen to everyone.

Everything written in here is so true, when I was married I was so tired but not knowing why, I finally told my husband that when I go to bed it is to sleep!




Take Care
Debora

[Cheryl]

Vicki and All,
   Your situation is shared by all of us.   I hate that intimacy is something I now dread, and I try hard to hide that I really don't want it anymore.   Sometimes it actually does not hurt me, but I still can't enjoy it for the fear of pain.   Maybe there will be some help for us one day.   I also have vagifem, and it helps some.   I saw an ad for a new "long lasting" lubricant (by KY, I think) on tv, and I will look for that.  Maybe we could try Numzit!  Now there's an idea -- a numbing lubricant for sjogies!
   You are not alone!
Cheryl

[dbab]

I can relate to you as well.  What's hard for me is that my hubby and I are in our early 30's... supposed to be the prime of our sex life right but I feel like I'm cheating him in this area.  It makes me feel hurt and angry at myself.  I often feel like at times that I may drive him into the arms of another woman who can take care of his needs.  He says that would never happen and I want to believe it but he is too young to have to go through this.  Guilt overwhelms me in this area and I have cried on my way to work many mornings thinking about how I couldn't be intimate with my husband the night before because I was in just too much pain, or nauseas, or exhausted.  I know exactly what you are saying.

[irish]

Everyone of you has said some very touching and important things regarding a good marriage. I, too, am blessed with a wonderful husband that believes in the "for better and worse". As I read all these notes the tearing were running down my face as we lose so much with this disease and the resulting loneliness is really the one that hurts the most. Irish

[salsen]

When I first began having serious health issues, it was a surprise as I have always been a very healthy person.  Between major neuropathy issues in my feet and two knee replacements surgeries in the same year, our lives suddenly tilted and nothing was the same as before.  I went from active to painfully sedate not to mention very dependent on my husband for numerous things.  Frustration was a major issue about all I could no longer do or was just too plain tired and hurting to do.  Pain can drain all desire from the body for doing anything.  Guilt soon was holding hands with the frustration and it took awhile for me to see the big picture.  Slowly but surely I began to realize that everytime I walk out the door and and my husband tells me to be really careful, when he reaches for me when walking over rough ground , when he still extends his hand to help me from a seated position or reaches to carry packages and bags that we are communicating in just as deep and loving way as we always have. 
That mgjic between two people comes in many different moments in life - not always behind closed doors.  Let the guilt go and learn to enjoy all the moments that bring you close no matter what form they may take.

[Pooh]

Thanks Sal, you are truly a wise lady. 

Hugs, Pooh

[Bonnie]

I am so happy that yet again I am able to find friends who are experiencing the same life altering symptoms.  I have tremendous guilt, as I too have been struggling with this issue.  I have been trying everything and anything to experience this part of my relationship with my husband  I miss the intimacy.    My dryness issues are getting worse all the time and it upsets me to think that at 35 this part of my life is over.  The fear of pain and the fatigue are hard to get over.  I even found it difficult to admit to my wonderful husband what is happening to my body now.  I am going to see my GP this week and will again try to see if there is anything else that we can try.

Thank-you all again, this site is invaluable.