[c-giver]

Hi All,
My fiancé is coming up on her 1-year anniversary of the TBI she got from an accident she had while riding her bike. She still has lots to accomplish with rehab for her short-term and long-term memory, balance, and vision issues; we’re working very hard on therapy (both at home and professionally) despite the nominal improvements of late.

But I have to share something that has not improved since her accident, and that is her desire for intimacy. Even small gestures of affection no longer seem to be "on her radar screen." Yes, we make love on occasion, but her soul is not part of the experience, nor can she experience anything close to fulfillment. It's not that its painful or causes her discomfort somehow, it simply isn't something she can feel passionate about.

Prior to her accident, our love life was beyond belief. We often had to pinch ourselves because the love making was so good. Now, she doesn't even remember and even doubts that I am telling her the truth when I try and recount what it was like. From my perspective, it hurts like h*** to have that part of our relationship disappear, but all I have to do is look at what she's had to suffer as a result of her accident and I quickly realize I'm being petty and selfish in comparison. So I suck it up and pretend that it does not affect me.

Recently, I've resigned myself to the fact that she may never return to her sexually active self and have even studied methods for being celibate (maybe one day, things will improve, but for now, I'm trying to put it out of my mind). Making any kind of sexual or affectionate advancement is greeted with indifference...to the point where I feel like I'm being rude by touching her. I am always very careful of not making her feel like she is under pressure to reciprocate and until posting here, have kept my intimacy frustrations to myself.

What is ironic is the fact that we are still hopelessly in love with each other and cannot imagine life without the other. TBI's (as I have come to learn) really do cause lives to change course dramatically, and sometimes tragically. She feels guilty that she cannot recall our past intimacy and that is the last thing she needs right now while she holds onto the hope that she will get back to normal.

I'm not posting in hopes that someone has a magic cure to our situation, but simply wondering if anyone else has experienced the same thing. I know that sexuality in general is an area commonly affected by TBI's, but what's shocking to me is how we've gone from one extreme to the other.

Sorry for my long-winded ramblings, but I needed to get this off my chest somehow, and the anonymity of forums like this give me the freedom to do so. Thanks for reading and "listening."

[Mark in Idaho]

Sorry to hear of your fiance's struggles. My wife had to deal with this with me. I was put on testosterone cream and DHEA tablets. Wow, what a difference.

One simple thing to do first. Get her hormones checked. You want to direct her to a doctor who is a specialist in bio-identical hormones. There is a link for a referral. https://www.womensinternational.com/..._referral.html

The PCS brain gets hormones all messed up. She may also be lacking in brain nutrition. Search this forum for nutrition or supplements. She likely needs additional B-6, B-12, folic acid etc. There are blood tests for folate and B-12. Her hormone doctor can request these tests.

Be patient. Flat emotional and sexual response is as frustrating for her as it is for you. She likely just does not know how to understand and discuss her flat emotions.

And, read Dr Glen Johnson's TBI Survival Guide at www.tbiguide.com You can download it as a MSWord document and print it out to highlight sections.

Be patient. She is still in there. She wants to get back to normal too. Be prepared that you both may have adjust to a new normal.

My best to you both.

[Concussed Scientist]

Hi C-giver,

It is a sad thing that has happened, but 1 year is not the end of your fiancé's recovery. You didn't mention much about how she is feeling, but if she is feeling unwell then that has to be considered. My guess is that the sort of love making that you are talking about and missing comes out of exuberance and is likely to be affected if someone is feeling unwell.

Speaking as someone who has had a traumatic brain injury, I felt that the sort of thing that you are talking about was pretty much out of the question for several years. However, I do think that just being with someone, irrespective of physical activity, would have made the pain that I had to endure easier.

So, don't think that you are not being appreciated just because some of the physical side is not the same as it was previously. The brain injury will be perhaps the most profound thing that your fiancé will ever experience, albeit sadly a negative experience. Nevertheless, going through it together could bring you closer. You did mention that you were both still very much in love, so that side of things hasn't been affected.

You didn't mention whether your fiancé is on medication, but that could also be affecting her and you may find that as she improves her condition she will be more interested in physical activities that she used to do. For me all physical activity was affected. I used to play a lot of sport but I don't feel like doing that now. So I think that you can classify the sex along with other physical activities that your fiancé might be so keen on now. That way you will see that it isn't necessarily anything to do with her feelings towards you. Maybe she wouldn't be that keen on going down a black ski run either.

In the end, things might return more to what they were before, but if not you are probably just in the same boat as many couples who have a long-term relationship. Even in the absence of a brain injury, it seems that sex lives do tend to become less important in a relationship the longer that it goes on. Nevertheless, some couples do manage to stay in love even though their love making is not as enthusiastic as it was when they first met.

I wish you both the best for the future.

CS

Originally Posted by c-giver

Hi All,
My fiancé is coming up on her 1-year anniversary of the TBI she got from an accident she had while riding her bike. She still has lots to accomplish with rehab for her short-term and long-term memory, balance, and vision issues; we’re working very hard on therapy (both at home and professionally) despite the nominal improvements of late.

But I have to share something that has not improved since her accident, and that is her desire for intimacy. Even small gestures of affection no longer seem to be "on her radar screen." Yes, we make love on occasion, but her soul is not part of the experience, nor can she experience anything close to fulfillment. It's not that its painful or causes her discomfort somehow, it simply isn't something she can feel passionate about.

Prior to her accident, our love life was beyond belief. We often had to pinch ourselves because the love making was so good. Now, she doesn't even remember and even doubts that I am telling her the truth when I try and recount what it was like. From my perspective, it hurts like h*** to have that part of our relationship disappear, but all I have to do is look at what she's had to suffer as a result of her accident and I quickly realize I'm being petty and selfish in comparison. So I suck it up and pretend that it does not affect me.

Recently, I've resigned myself to the fact that she may never return to her sexually active self and have even studied methods for being celibate (maybe one day, things will improve, but for now, I'm trying to put it out of my mind). Making any kind of sexual or affectionate advancement is greeted with indifference...to the point where I feel like I'm being rude by touching her. I am always very careful of not making her feel like she is under pressure to reciprocate and until posting here, have kept my intimacy frustrations to myself.

What is ironic is the fact that we are still hopelessly in love with each other and cannot imagine life without the other. TBI's (as I have come to learn) really do cause lives to change course dramatically, and sometimes tragically. She feels guilty that she cannot recall our past intimacy and that is the last thing she needs right now while she holds onto the hope that she will get back to normal.

I'm not posting in hopes that someone has a magic cure to our situation, but simply wondering if anyone else has experienced the same thing. I know that sexuality in general is an area commonly affected by TBI's, but what's shocking to me is how we've gone from one extreme to the other.

Sorry for my long-winded ramblings, but I needed to get this off my chest somehow, and the anonymity of forums like this give me the freedom to do so. Thanks for reading and "listening."

[c-giver]

Originally Posted by Mark in Idaho

Sorry to hear of your fiance's struggles. My wife had to deal with this with me. I was put on testosterone cream and DHEA tablets. Wow, what a difference.

One simple thing to do first. Get her hormones checked. You want to direct her to a doctor who is a specialist in bio-identical hormones. There is a link for a referral.

The PCS brain gets hormones all messed up. She may also be lacking in brain nutrition. Search this forum for nutrition or supplements. She likely needs additional B-6, B-12, folic acid etc. There are blood tests for folate and B-12. Her hormone doctor can request these tests.

Be patient. Flat emotional and sexual response is as frustrating for her as it is for you. She likely just does not know how to understand and discuss her flat emotions.

And, read Dr Glen Johnson's TBI Survival Guide at... You can download it as a MSWord document and print it out to highlight sections.

Be patient. She is still in there. She wants to get back to normal too. Be prepared that you both may have adjust to a new normal.

My best to you both.

Thanks for the suggestions and comments....I read the TBI Survival Guide a while back (very informative, BTW) and recently suggested that my fiance do the same, but she is concerned that maybe she doesn't want to know the facts about TBI just yet, so I did not push it.

I filled out the hormone doctor referral form you posted and we'll see where that takes us. Several months ago, at the suggestion of her neurologist, we talked to her PCP about hormone imbalance, and he kinda poo-poo'd it - obviously we weren't using the proper resource and we'll pursue it harder this time.

Since her emotions are indeed quite flat, she too is anxious to regain that part of herself, so it will be interesting to see what happens.

[c-giver]

CS,
My fiance actually feels very good physically and isn't on any medications, except meds for night spasms (as needed). She has minor dizzy spells and the rare headache, but otherwise, feels good. So the lack of interest doesn't come from that...but rather a fuzzy unfamiliarity about how to go about interacting sexually.

You are right though in your observation that in time we may get back to more normal intimacy, but if we don't, it won't matter, since we are blessed with the fact that our love for each other is the same if not greater than before the accident. "Love and Patience" has been our motto ever since day one for coping with everything, so we realize the power of being fortunate enough to have our relationship come out in tact.

There is no question in my mind about her devotion to me...it comes out every time she questions why I'm standing by her. To her, the most caring thing she can do for me is to "set me free" to enjoy life without her being a burden - what a sacrifice for her to think something like that! Man, if I had a nickle for evertime we had that debate...my burden would start the second we said goodbye. My response is that there is NO WAY I am giving up on her and as you noted, we are closer than ever in our committment to remaining a team in our fight to regain every ounce of her original self. We've come this far and we ain't quitting!!

Thanks for sharing your thoughts,
c-giver

[Mark in Idaho]

cgiver,

Might I suggest you and your fiance' start and keep a journal of the discussions you have about your current life together. As she progresses, being able to return to those journaled feelings, disagreements and agreements may help both of you deal with the future.

Just a thought.

Your times right now sound valuable for your life together to mater what.

My best to you.

[ginnie]

Love has many faces as you now know. Intamacy is important. I really wish I could say something to really help you. I do know, if you two can just hold each other in bed, talk to each other with no sexual intention, just to feel the human hug. Spoon and chat to each other, be close in the mind and spirit. Reach out to her somehow with compassion in your heart, that she will feel. Men have a tuff time with emotions sometimes, women need the emotions and a mental state that is in balance. Hugging just may restore some balance and allow you to get closer. I am so glad you have the love between you. When a person is so injured, I believe she needs you more than ever, even if she can't express it. I am telling you that because I need hugs. I get long moments just to hold on to another. It keeps me from going over the edge sometimes, and returns me to a better state of mind. I wish you both all the best.ginnie

[milesa7]

I have been dealing with the same thing, except my husband seems to look right through me. I can tell he still loves me, but it's not like before his accident. He has been recovering remarkable well and at a faster rate since his m/c accident on 3/9/11. He no longer needs speech therapy, occupational therapy, or physical therapy. He is back at work light duty & was cleared to drive. On Wednesday it will be 13 weeks. He's almost back and it does hurt like H*** to love someone with all your heart and see them going through such an ordeal. All I can do is pray, have faith, and be patient that he will come back. The hardest thing to accept is the fact the brain is not like any organ in the body and just takes longer to heal. I miss his "i miss u" texts & his "wanting to hear my voice" calls, and I do cry almost every day because it is hard.

This has brought us closer, but I still feel he doesn't emotional understand what I have been through.

I pray for your strenght and for any person who cares for a loved one w/TBI.

[Mark in Idaho]

A common symptoms of PCS is flat emotions. Then there is the occasional emotional lability. He may get weepy or angry at an exaggerated level beyond what would be considered appropriate for the situation.

Some of those "i miss u" texts and "just wanted to hear your voice" may need to be learned behaviors when they were previously emotionally lead behaviors. And, YES, he can learn such behaviors. In fact, the response he gets from you even though he know you understand they are a learned behaviors, not natural felt behaviors, will be beneficial to his continued learning and healing.

milesa7,

You would greatly benefit from finding a Brain Injury Support group in your area. The camaraderie of spending time with other wives will be valuable. You will be able to talk freely without having to explain every feeling you have. When you make a comment and see heads nodding, you will realize you are with others who understand.

There are books about this but being with people is far more valuable.

And, Please don't ask him about his love for you. He may not be able to respond to your liking. Years ago, during a period when my emotions were in a very flat period, my wife asked me if I loved her. I responded, "I don't know." She was devastated. Problem was I did not understand any emotional feeling about anything. I was just too flat emotionally. Seeing her hurt was just heaping pain on my own confusion.

The biggest problem is that very few professionals consider that PCS seriously effects the family too. I tried to get a wives/spouses of PCS sufferers thread started but it did not take hold.

My best to you.

[drtim12760]

Thank You for your post.
My wife is 2 years past her TBI and I was beginning to wonder if our marriage was at an end due to our lack of intimacy (3 times in 2 years). We had a very fun, loving even playful marriage prior to her injury. Now she has little interest or desire for anything including me. I love my wife immensely and "missing" her very much. I find it hard to discuss this with her because she thinks I am criticizing her or being selfish. I only want to have a deeper understanding of what is happening to our life together.
I think reading your post has helped me realize that her attitudes toward me and "us" isn't something I should take personally but rather something I should learn to accept as just the way it is and learn to re-charter our path together.

Sorry for such a rambling reply, but reading your post helped me to understand and not be so confused and hurt.