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#1 Patty


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Posted 21 September 2007 - 02:18 PM

Getting ill has caused so many changes in my life. I have lost so many things that I used to enjoy. Things like going out on the Harley with Tom. Walking to the center of town with the baby, planning things and knowing that I am going to follow through because I will still feel well in a week. You all know what I mean I am sure. I have to say the one thing that I really miss the most is the passion that Tom and I had for each other.... Don't get me wrong we still love each other but the spark is gone now and I so miss it.

I have gained so much weight in the name of getting better ( I am not getting better) that I am not as attractive as I once was to him. Its not his fault, we all have types of people we are attracted to so that part I understand. I just wish that I felt better and had soime of my old passion as well....

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 aniwallar


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Posted 21 September 2007 - 06:40 PM

Hi Patty:

I think I understand what you are talking about. In my case, we had lost everything mostly because the lack of empathy from my husband. I recent that so I'm the one who doesn't want much.
I don't think gainning weight has much of an effect in guys. I think it's just because we "don't feel good" that they prefer to stay away. It is important for you to remember that you are as atractive as you believe you are. The better you feel about yourself, the better you present yourself to your husband.
I know you don't feel well but you have to try to do something. If you don't do it now, things would just get comfortable this way and then it will be very hard to bring it back to what it was.
My husband and I love each other but I should have done something when I felt that things were just going downhill. Now I don't have the energy to even try so we have both just gotten used to life this way. We go out sometimes and have fun, but it's not the same. I could be having the same fun with my sister. Don't let that happen to you.
I don't kow if this will help you, but I wanted to sharemy thoughts.

Have a good day,

#3 Vee


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Posted 23 September 2007 - 03:51 AM


YOu couldn't have said it better. It happens slowly, and before you know it. BAM! It's done. And you've become a good friend instead of a spouse. When I read your words, "I could be having the same fun with my sister." It hit home. I feel the same way. We've got to find a way to get it back. I've pretty much adjusted everyother aspect of my life to fit in with this new sclero kind of life. Now I need to fix "that" part.

Thank you Patty, for bringing this up. It's a hard place to go, but I think this disease affects so many things in our life, from the simplest to the most complex, and this is definitely one of those complex things. We can change our attitude and the way we look at life, but we can't really change what is happening to our body's as it changes. I guess we have to accept ourselves as a whole, just the way we are, and learn to love it. Can't let anyone love us 'til we love ourselves!

Thanks guys!

Have a beautiful day!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#4 Patty


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Posted 23 September 2007 - 01:27 PM

Ani And Vee,

Thanks for the replies. I know I am not alone and I know that this is a hard subject to talk about but its part of me and if I can't talk about it here I would not be able to talk about it at all. My friends are healthy so they do not get the tired, the blahs the pains the stiffness etc etc not to mention the unmentionable things. Here I can talk and people understand. What a big help this is...... I am not alone.

The part about being able to do the same things with your sister, well.... that's Tom and I now. He's frightened to touch me for fear I will hurt and he just can't bring himself to understand that he would not be hurting me. I need him to need me. We need to find a new way to get something back in our life. He is my best friend but I need more and I know he does. I just have to hope that at some point we can turn back time and bring some passion back.

Thanks again.

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#5 kdnole



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Posted 24 September 2007 - 10:01 AM

Patty, as a spouse and care giver I know what you're saying because my wife is in her 3rd yr. since being diagnosed and she has said the same thing. I will tell you I find my wife as beautiful and desirable as the day I met her. Unfortunately we find ourselves even more less involved because I was diagnosed with prostate cancer back in May of this year and as some might know it kind of zaps the soldier and the desire on my side. Whenever we are intimate even as simple as a kiss in the morning we laugh and roll our eyes at how I have to squat down because she cannot look up due to the tightness of her neck. Ani, I think you said it best is it's not the weight gain "it's because we "don't feel good that they prefer to stay away". It's tough as a spouse to try and feel selfish by wanting something that is sometimes far from my wifes mind. A lot of times she is so ichy and / or having bad nerve pains the last thing on her mind is wanting the passion we used to have. In the same breath she is cursing this disease for taking it away. Don't lose hope because I'm sure the passions there it just might take time and effort to get it back.

#6 Katherine


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Posted 24 September 2007 - 10:43 AM


What a nice reply. Thank you.


#7 MicheleM


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Posted 24 September 2007 - 10:48 AM

Hi all. Michele here. Haven't been on this forum for a long, long time, but I'm back. Thank you Vee. I was just discussing this topic the other day and it's amazing when you realize you're not alone. Sometimes it's really hard for the other half to understand any of what we go through as they haven't walked in our shoes. One day ouch another day ohhh and still others awwww. I've been diagnosed since 2000 - surely this has been a part of life before that - and since then at least he's more understanding but still confused (if that makes sense). He doesn't get that one day everything can be moving smooth as glass & then the glass breaks maybe just 5 minutes since he's turned around. When it comes to intimacy, well, it's hard to relax when you've got that irritation or pain in the back of your mind. One thing I can say (not that I listen to myself) is to try to talk about whatever the problem is in a non-aggressive way. Maybe write it down and see how the words look to see if you are really feeling what you think you are. Today I went to the bookstore (used of course) and got a book on relationship rescue to see if there is anything inside that might help me and inturn, help you and that was before I read this post!!! I know there are exercises in there for both partners, etc. and will let you know what I find out. One thing I do know is we have to remove some of the emotion ... what we live is how we make it & if we are confused, unsure imagine what the other side is feeling. I promise I'm going through a rough patch myself after 30 years of being together. It doesn't get easier unfortunately, but I do love my husband ... just really frustrated right now. We all have to give ourselves a break and having each other to discuss things with who understand surely does help. THank you all for being here for me too. Future book reports to follow! Michele
Soft hugs your way,


#8 lizzie


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Posted 24 September 2007 - 12:40 PM

Hi Patty, Please don't despair I think these fallow periods in a relationship happen more frequently than not - even when life is not complicated by Illness. I've been married for 31 years and during that time there have certainly been fairly lengthy periods of time when the 'spark' has not been there and I know from talking to friends that this has been the case for them as well. However I also know that it is possible to regain the closeness. I'm no expert in relationship therapy (could make a fortune if I was!) but I agree with Vee that when we don't feel good about ourselves we may subconciously send out signals that we are no longer interested. We then take our partners seeming lack of interest as proof of the fact that we are not desirable and so it becomes a vicious cycle. It is often very hard to talk about these feelings with each other so what I found helped for me was to make an effort to keep in physical contact in a very low key way such as a kiss on the cheek, touch on his arm or reaching for his hand. I think being touched makes a person feel wanted and sends out the signal that we are still interested in them.

#9 janey


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Posted 24 September 2007 - 01:12 PM

Hey All,
As has already been mentioned, this is a very hard subject to discuss, but some wonderful words have been spoken here. KD - thanks for speaking from the spouse's perspective!

My hubby and I discuss this problem a lot and we're always looking for other ways to demonstrate our passion. Sometimes it's in things that we both feel passionate about. This satisfies us both emotionally, but there is still the physical aspect that is the hardest to work with. Still working on that, but at least we're working together.

We have a page on Sexuality and Scleroderma that talks about intimacy and has a couple of links on how to improve this with a chronic illness. I invite you all to visit this link. As with all pages at ISN, this is a page in progress, so if you have any suggestions on how to improve it, please PM me. Any input is greatly appreciated.

Big Hugs to you all,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#10 giorgigirl


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Posted 28 September 2007 - 04:48 AM

Aw I know what you are saying but at the end of the day our bodies are just a vessel and it is our soul that eminates our beauty and that can never been damaged by scleroderma or any other desease. Hard to remember and hard to deal with I know. But you know at least you have a partner to share your thoughts, to cuddle up to, someone who is there to lessen your fears.
I have lived on my own now since 1989, I was married once but I have not met anyone since then that re lit my fire so to speak and now, since having this desease for a few years I have given up all hope of ever having that companionship. I thank my blessings that I do have two wonderful children (young adults) that I can call upon in my time of need.
Our physical appearance may change, and everyone changes with age regardless of health issuses, but at the end of the day it is purely physical, you will never lose the real you and this is something that your partners first fell in love with, just as you fell in love with them.

May you find peace and love in your hearts and continue to share your friendship, love and respect with your companions