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Post by catlover on Nov 9, 2023 15:13:07 GMT -5
Last week I (and my wife) attended the 4th Annual International mneeting of the Amyloidosis Alliance (Amyloidosis being a nasty protein misfolding disease of which my wife is a sufferer) imn Madrid, Spain. (only our 4th overseas trup this year to attend and participate in medical conferences!)
One of the subjects cob=vered was, surprisingly, during the "DARE TO SPEAK ABOUT" topic, was entitled "Discussion about Sex and the impact of Amyloidosis"> Very frank and open discussion which ementioned how the libido tends to fade away early on on in the progression of the disease.
I was one of the speakers there as well, asked to give a short 15 minute presentaion on the subject of "When to seek help as a caregiver and where to find help". Dry as dust topic but I guess because I injected some of my own experiences into the presentation I got pretty emotional.
A couple other caregivers also gavce presentations on the topics of theimprotance of self care and one in particular really gave me a huge lump in my throat , from a woem who has lost multiple members of her family to this (inherited) disease.
The common thing mentioned by both of the other (female) caregivers was how much they missed intimacy and sex after thir husbands libido had faded away.
All of a sudden I felt more at peace than I have for a very long time, I think, mayn=be, just being hit with the realization that it was just a shitty part of the disease and nothing I had done and that 'we' weren't abnormal.
Now, it isn't really important, but I think I have finally reached acceptance of the situation. Is that quitting? Does it really matter/
on a side note, we got a lovely gift from Spain, we both tested positive for COVID yesterday. Yes, it is alive and well and not going away.
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Post by northstarmom on Nov 9, 2023 16:34:51 GMT -5
catlover, I'm glad you got support at the conference you went to and learned that what you're going through as a caregiver isn't unique to you.
I hope you will keep in touch with some of the caregivers you met so you can vent and give each other support.
I also hope that you'll arrange for a temporary caregiver for your wife so you take some trips by yourself or even have a staycation where you live. As you heard, self care is important. You are important and shouldn't always be in a position to give.
I hope you recover quickly and completely from Covid.
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Post by catlover on Nov 10, 2023 0:29:02 GMT -5
catlover, I'm glad you got support at the conference you went to and learned that what you're going through as a caregiver isn't unique to you. I hope you will keep in touch with some of the caregivers you met so you can vent and give each other support. I also hope that you'll arrange for a temporary caregiver for your wife so you take some trips by yourself or even have a staycation where you live. As you heard, self care is important. You are important and shouldn't always be in a position to give. I hope you recover quickly and completely from Covid. Thanks so much for the kind words. Funny enough I have met the other two caregivers (females) previously, but I guess I thought I was maybe unfeeling and selfish for still desiring physical affection and at least some kind of intimacy. Hearing other people talk about it and then also hearing about it in a psentation by a physician specialist in the disease made me feel normal I guess. one of the ladies in particular made me promise to reach out to her, she is an artist and as mentioned above has suffered terribly with loss of family members to this disease. Very touchy-feely person, very easy to open up to. |
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Post by mirrororchid on Nov 10, 2023 6:15:54 GMT -5
We speak of three choices.
1) Stay and cope.
2) Outsource (secretly or disclosed)
3) Leave.
You are (at least for now) at peace with your sexless marriage.
This sounds to me like successfully landing on option 1, not quitting.
No sin if frustration creeps in again later, or comes and goes. Take the W.
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Post by worksforme2 on Nov 10, 2023 6:49:11 GMT -5
This is the 2nd posting I have read this morning from a member who has decided they can be at peace with the status of sexlessness in their marriage. Two very different paths for you and Deleted(formally shyinnewjersey) but arriving at the same destinaton. I am both saddened and happy for the both of you. I hope you will retain your membership and continue posting for others who mayb at some point find themselves facing similiar circumstances. The best to you both going forward.
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Post by catlover on Nov 10, 2023 20:00:48 GMT -5
Yeah, I will be around and hopefully able to pay it forward in some fashion. It has been a long and rather frustrating and sometimes anger-filled journey. It is still hard to accept that pretty much the last 10 years of my life have been a fruitless chase for the impossible.
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Post by toughtiger on Nov 10, 2023 20:55:44 GMT -5
while health issues do make it hard to be mad but even knowing others are going through it too has not sunk into me to feel like coping...
i am getting worse i look at new people i meet like maybe there is a possibility..... i miss intimacy so much.
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m76
Full Member
Posts: 416
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Post by m76 on Nov 10, 2023 21:14:18 GMT -5
while health issues do make it hard to be mad but even knowing others are going through it too has not sunk into me to feel like coping... i am getting worse i look at new people i meet like maybe there is a possibility..... i miss intimacy so much. That's so hard...our spouses must notice the change in our personalities and how sad we are, but they just don't seem to care. All the pressure is on us to adapt. |
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Missingout
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Posts: 244
Age Range: 46-50
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Post by Missingout on Nov 11, 2023 5:25:54 GMT -5
while health issues do make it hard to be mad but even knowing others are going through it too has not sunk into me to feel like coping... i am getting worse i look at new people i meet like maybe there is a possibility..... i miss intimacy so much. If it were me with a health problem that would keep me from having a Low sex drive or incapacitated to do the deed. I know I would do whatever it took to keep my significant other satisfied. There are soo many ways. I’m always a problem solver and I always find solutions to life’s handouts. I’m not a quitter. If my significant other could be the same it would be a perfect world. I guess I didn’t pick that person to marry. Coming to the realization that it’s been me all these years keeping it together all these years. I need a new teammate. |
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Post by catlover on Nov 14, 2023 11:21:53 GMT -5
while health issues do make it hard to be mad but even knowing others are going through it too has not sunk into me to feel like coping... i am getting worse i look at new people i meet like maybe there is a possibility..... i miss intimacy so much. If it were me with a health problem that would keep me from having a Low sex drive or incapacitated to do the deed. I know I would do whatever it took to keep my significant other satisfied. There are soo many ways. I’m always a problem solver and I always find solutions to life’s handouts. I’m not a quitter. If my significant other could be the same it would be a perfect world. I guess I didn’t pick that person to marry. Coming to the realization that it’s been me all these years keeping it together all these years. I need a new teammate. Try not to be too quick to judge, Came back from Spain with a delightful gift, a lovely dose of covid. I can quite categorically state that sex was pretty low on the list of wants this week. Yes, I do really, really miss intimacy, but the only benefit youget from flogging a dead horse is lots of sweat. Not a religious person, (nor an alcoholic) but I find the Alcoholics Anonymous prayer to be inspiring. (Not easy to put into practice but worth striving for.) “God grant me the serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference.” "The Serenity Prayer was originally a prayer that Reinhold Niebur used following a sermon in 1943. It was later adopted by Alcoholics Anonymous as part of their program of recovery. The Serenity Prayer is a good guideline for daily living, regardless of whether you are an addict or not. Acceptance of our past, present and relinquishing control about the future is one of the hardest things for individuals to do." |
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Missingout
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Age Range: 46-50
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Post by Missingout on Nov 14, 2023 12:08:43 GMT -5
If it were me with a health problem that would keep me from having a Low sex drive or incapacitated to do the deed. I know I would do whatever it took to keep my significant other satisfied. There are soo many ways. I’m always a problem solver and I always find solutions to life’s handouts. I’m not a quitter. If my significant other could be the same it would be a perfect world. I guess I didn’t pick that person to marry. Coming to the realization that it’s been me all these years keeping it together all these years. I need a new teammate. Try not to be too quick to judge, Came back from Spain with a delightful gift, a lovely dose of covid. I can quite categorically state that sex was pretty low on the list of wants this week. Yes, I do really, really miss intimacy, but the only benefit youget from flogging a dead horse is lots of sweat. Not a religious person, (nor an alcoholic) but I find the Alcoholics Anonymous prayer to be inspiring. (Not easy to put into practice but worth striving for.) “God grant me the serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference.” "The Serenity Prayer was originally a prayer that Reinhold Niebur used following a sermon in 1943. It was later adopted by Alcoholics Anonymous as part of their program of recovery. The Serenity Prayer is a good guideline for daily living, regardless of whether you are an addict or not. Acceptance of our past, present and relinquishing control about the future is one of the hardest things for individuals to do." Very inspirational indeed. That’s all we can do accept the things we can’t change. Like the weather and other peoples sex drive. My question to myself is if I can’t change her then I must accept to move on. I hope the trip to Spain was good. Sorry the Covid got ya while you were there. |
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