# Heavy load of mental and physical issues.



## hopelessromantic1 (Feb 16, 2012)

Where to begin? I've been married to my love for 2 1/2 years now. Shortly after we married, he was diagnosed with Tuberous Sclerosis, a genetic disorder. Basically, it's a disorder where they lack the gene that suppresses tumor growth. For most people, there are lesions on the brain, lungs, heart, and or kidneys and seizures are involved. He does not have seizures but does have many lesions in his brain. The other main effect of TS is major anxiety. I also suspect some form of (mild) Autism as well, he's VERY OCD, has trouble socially, a total computer geek, and hits a high number of other things on the autism list. He's really emotionally high maintenance, with a lot of attitude. He himself has said that he's Bi-Polar, but never diagnosed.
For years he's been on different anxiety meds, and as soon as he gets a new med, he googles for side effects then immediately diagnoses himself with most of them, and quits the meds. After being on Wellbutrin and Prozac for the last year, he decided he was done with them because it was causing him sexual dysfunction....taking him a VERY long time to climax. He's a very sexual person, wants it every other day, which completely wore me out, taking so long every time. If I didn't want to give him that much sex, he would pout, act as though I didn't love him, pretty much guilt me into doing it. Since he's been off the meds, we've only had sex twice because now he has no sex drive. (I'm looking at this as a well deserved break LOL) He also only has ever really been able to make friends (other than a few close life-long friendships) with people on the internet. He likes to talk to women, and has admitted to it turning sexual (texting) because it gives him that ego boost of talking to a "lonely married woman" and making them feel better. 
I've been nothing but accommodating...understanding that he is different, and has his own outlook on the world. He lived at home and was a virgin until his mid twenties, and lived most of that time through the internet. The issue I'm having is that he really seems more and more like a giant child and i'm getting tired of it. I feel like sometimes I'm being played, because he knows I love him and want him to be happy. But lately it's at my expense. I know he won't cheat on me, but a couple months ago he started sleeping on the couch and NEVER comes to bed. So, now I'm taking care of this man physically and emotionally, giving him tons of leeway, and also having to go to bed alone at night. Starting to feel like I'm married and completely alone! He has always been a night owl, and people with TS have a very hard time with sleep...many of them do not sleep much at all. So he stays up til all hours watching tv and eventually falls asleep on the couch...but when I leave for work, he goes and hops in the bed every morning. 
I feel like I'm being cheated out on my life...we aren't having kids because the TS causes heart tumors in over 50% of offspring, and he and his first wife lost a baby from it before she was born. Our social circle is so small, because of his anxiety and oddness...we argue all the time, especially when he's off his meds, I just don't know what to do! He says he'll go to counseling but then tells me that since he's on call he can never promise to be there....which is like saying "no" to counseling if you ask me. I'm at a loss, but I don't want to leave. I love the man, but I know I can't "fix" him...but how much of myself do I have to lose/give up in order to keep him happy? Sorry this is so long...I guess I needed to vent a little. I have no one to talk to and a best friend who if I speak to her about him tells me he's toxic and I deserve better...


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## ankh (Oct 14, 2012)

hopelessromantic1 said:


> Where to begin? I've been married to my love for 2 1/2 years now. Shortly after we married, he was diagnosed with Tuberous Sclerosis, a genetic disorder. Basically, it's a disorder where they lack the gene that suppresses tumor growth. For most people, there are lesions on the brain, lungs, heart, and or kidneys and seizures are involved. He does not have seizures but does have many lesions in his brain. The other main effect of TS is major anxiety. I also suspect some form of (mild) Autism as well, he's VERY OCD, has trouble socially, a total computer geek, and hits a high number of other things on the autism list. He's really emotionally high maintenance, with a lot of attitude. He himself has said that he's Bi-Polar, but never diagnosed.
> For years he's been on different anxiety meds, and as soon as he gets a new med, he googles for side effects then immediately diagnoses himself with most of them, and quits the meds. After being on Wellbutrin and Prozac for the last year, he decided he was done with them because it was causing him sexual dysfunction....taking him a VERY long time to climax. He's a very sexual person, wants it every other day, which completely wore me out, taking so long every time. If I didn't want to give him that much sex, he would pout, act as though I didn't love him, pretty much guilt me into doing it. Since he's been off the meds, we've only had sex twice because now he has no sex drive. (I'm looking at this as a well deserved break LOL) He also only has ever really been able to make friends (other than a few close life-long friendships) with people on the internet. He likes to talk to women, and has admitted to it turning sexual (texting) because it gives him that ego boost of talking to a "lonely married woman" and making them feel better.
> I've been nothing but accommodating...understanding that he is different, and has his own outlook on the world. He lived at home and was a virgin until his mid twenties, and lived most of that time through the internet. The issue I'm having is that he really seems more and more like a giant child and i'm getting tired of it. I feel like sometimes I'm being played, because he knows I love him and want him to be happy. But lately it's at my expense. I know he won't cheat on me, but a couple months ago he started sleeping on the couch and NEVER comes to bed. So, now I'm taking care of this man physically and emotionally, giving him tons of leeway, and also having to go to bed alone at night. Starting to feel like I'm married and completely alone! He has always been a night owl, and people with TS have a very hard time with sleep...many of them do not sleep much at all. So he stays up til all hours watching tv and eventually falls asleep on the couch...but when I leave for work, he goes and hops in the bed every morning.
> I feel like I'm being cheated out on my life...we aren't having kids because the TS causes heart tumors in over 50% of offspring, and he and his first wife lost a baby from it before she was born. Our social circle is so small, because of his anxiety and oddness...we argue all the time, especially when he's off his meds, I just don't know what to do! He says he'll go to counseling but then tells me that since he's on call he can never promise to be there....which is like saying "no" to counseling if you ask me. I'm at a loss, but I don't want to leave. I love the man, but I know I can't "fix" him...but how much of myself do I have to lose/give up in order to keep him happy? Sorry this is so long...I guess I needed to vent a little. I have no one to talk to and a best friend who if I speak to her about him tells me he's toxic and I deserve better...


You have so very much on your plate. You didn't sign on to be a mother to an adult man who acts like a child. If I am correct you married hoping to have an equal partner. 

Do you have any OTHER children yet? I would definitely give hubby the ultimatum that he and you will both seek out and attend marriage counseling together. If he refuses to attend then he's refusing to stay married to you; he loses out on all the perks and benefits you afford him.

It's been a few months since you posted this. What changes have occurred in the mean time?


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## hopelessromantic1 (Feb 16, 2012)

No other children, thanks to his genetic disorder we'll not be having any. over 50% of children born to a parent who has it is born with major heart problems. 

Some things have changed for the better, he definitely has opened his eyes to the fact that he's a serious jerkface. LOL He still falls asleep on the couch about every weeknight, I've given up and just appreciate when he DOES come to bed. 
I gave the counseling speech MONTHS ago, and told him I was going to find someone and make an appointment. He said "well, my work schedule is crazy and if you make a 6pm appointment, I can't guarantee that I'll be there." Which is BS, he may answer a call or two in the evenings but he rarely ever works past six, he works as little as he possibly can and no overtime. So..he said that HE would make the appointment because he wanted to find someone with a flexible schedule. Many weeks and several arguments later, he hadn't done it, said he hadn't had time to look them up. I emailed him (the same day) a list of insured providers and here we are today, he still hasn't done it. I realize now that he's controlling this situation (and every other). I know that regardless of his physical and mental health issues, he's a jerk. Period. I know it makes no sense but I can't walk away. I don't want to fail. We live thousands of miles from any of my family, and I'm scared of starting over with nothing. I tell myself it's because I love him, but I've spent so much time hurt and angry that I know the love isn't enough. Thanks for asking, it's been rough and I don't see it getting any better until we get in counseling, if at all.


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## ankh (Oct 14, 2012)

so I guess that's the question if there's no counseling if he doesn't change anything at all, can you really endure this relationship forever? what if you find other friends and girlfriends to go do stuff with, would that piss him off or get his attention or wake him up?


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## soulpotato (Jan 22, 2013)

It sounds to me like you will have nothing if you _don't_ start over. 
_Posted via Mobile Device_


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## hopelessromantic1 (Feb 16, 2012)

I'm going to tell him I'm making a counseling appt and if he can go, great. If not, I'll just work on myself and make plans to move on. I have friends, and we do girls night, etc...he encourages it, that's no problem with him at all. I think going to counseling without him will wake him up. It's frustrating to think that I have to go to such extremes to get this marriage headed in the right direction. I feel like I'm doing all the work.


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## turnera (Jan 22, 2010)

Make the appointment and go. You'll get good advice on how to deal with him, if nothing else.


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## turnera (Jan 22, 2010)

hopelessromantic1 said:


> I feel like I'm doing all the work.


My IC told me that, once I stopped propping up my husband, he'd have to do it himself (change). It's true.


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