abbyw Posted November 8, 2012 Report Share Posted November 8, 2012 Hi,I am venting here, hoping someone will be able to relate. I am feeling so depressed. I don't know if it is the POTS, or the meds, but I am just tired of it all. And my husband has complaints. That I don't put enough into our relationship. I don't initiate any romance. I don't know if I should laugh or cry. I feel like I am a hero for not staying in bed all day. I feel that I am amazing for not just giving up. I am trying not to lose my job, so I work every day. I try to make food for the kids. I do laundry. And all I want to do is crawl into a little ball and cry. And he wants me to be initiating romance? He says that he doesn't blame me but he feels hurt that I am not romantic anymore.Any advice?Thanks,Abby Quote Link to comment Share on other sites More sharing options...
misstraci Posted November 8, 2012 Report Share Posted November 8, 2012 Abby, You are amazing for doing all that you do and not giving up and not staying in bed all day. I can relate 100%. I try so hard to work my job which most days I'm just pushing through hoping nothing terrible happens because I feel so crummy. Then you come home (job #2) and take care of kids, me too. Cook, clean, bathe, etc etc. All I want to do when all that is over is go to bed. There isn't a romantic bone in my body at that point. I'm not sure about you but I don't sleep well so when I wake up in the morning I feel like I haven't slept in days, i'm tired, i have no energy and as the day goes on it can improve a little but by nighttime i'm completely drained. Aside from physically not being in a romantic mood. My mindset is completely focused on not feeling good and trying to get better so, not to be mean, but i'm not even thinking about stuff he's thinking about. So, long story short, mine doesn't really "get it" either. Quote Link to comment Share on other sites More sharing options...
corina Posted November 8, 2012 Report Share Posted November 8, 2012 Have you been able to really talk to your husband? Told him what you wrote down? Sometimes it's just that our better half just doesn't notice the efforts we make to keep going. Maybe telling him in detail what it takes you to do the things you are already doing could make him understand. Or you could plan "together time" for you and your partner where you don't esp need to physically go out to dinner or something like that but just watch a movie together (without being interupted by kids). Not sure if this would work for you, just thought to try help you! Quote Link to comment Share on other sites More sharing options...
micheller Posted November 8, 2012 Report Share Posted November 8, 2012 I can totally relate. I have 3 kids but I can't work. My husband works nights so I'm on my own during the day until he gets up. Most days it's hard to keep going. My oldest kids try to help out a lot after school but I think they make more work than necessary but they try. I was with my husband before I got sick so he's seen the healthy me and I know he wants that back. He's seen me go downhill and hit rock bottom. I know he gets frustrated I can't do the things I used to. My sex drive is next to nothing, I just can't muster up the energy. I know that's taking it's toll on him but he understands to a point. Of course his selfishness takes over some days and he gets mad. Usually a little snuggling on the couch lightens the mood, since I'm laying there anyway. I would talk to him. Tell him exactly how you're feeling. Does he help with anything? My husband used to come home and park his butt on the couch. When I asked if he could help me with this or that he would say he worked all night. So I went on strike. I didn't clean, cook, laundry. He had to do it. After that he changed his tune. Guys can't read minds and we need to be blunt with them. Maybe he doesn't realize all that you do or how bad you're feeling. Quote Link to comment Share on other sites More sharing options...
abbyw Posted November 8, 2012 Author Report Share Posted November 8, 2012 Thanks you guys for your support. Sometimes it is just hard. I would also like to be fun loving again. Quote Link to comment Share on other sites More sharing options...
ladyt Posted November 8, 2012 Report Share Posted November 8, 2012 Like my man says, its hard to know how i feel. But he tryes. when we meet i was allerady sick whit this stuff. But was in a brief better window. I told him how bad my health really was, but he didnt belivve me. before the first year i had a bigg chrash . But he still whanted to move inn whit me. He later told me that if he knew how awfull my health was he would have keept his distance. But he coudnt blame me cos i told him. never ending illnes is a strain on the relationship. But we have been togetter for 9 years now. and since i ust bougth a rediculus expensive dress ( for me at least, have had nigthmares for days, and apperntly on cant change one mind whit out losing the deposit) it better last till 10 and then some many years more....hope u gett to talk whit our man and explain. and often ust ranting alilte helps Quote Link to comment Share on other sites More sharing options...
corina Posted November 9, 2012 Report Share Posted November 9, 2012 It is hard abby! "I would also like to be fun loving again."Maybe telling (not shouting ) your husband this might help him understand! Quote Link to comment Share on other sites More sharing options...
songcanary Posted November 9, 2012 Report Share Posted November 9, 2012 My hubby didn't get it until I had to ask him to take me to my doctor appts because I became too sick to drive. Then when he saw an actual doctor address my actual symptoms he understood. I was resentful because it took some other man in a white coat to convince him, while I had been in obvious decline for three years! The other posters are right; men need direct information. They have no imagination when it comes to knowing how we feel. Try to have a conversation with him. And hang in there. Quote Link to comment Share on other sites More sharing options...
SeattleRain Posted November 9, 2012 Report Share Posted November 9, 2012 The other posters are right; men need direct information. They have no imagination when it comes to knowing how we feel.As a male, I can vouch for this. I don't even know how I feel myself half of the time. Quote Link to comment Share on other sites More sharing options...
micheller Posted November 10, 2012 Report Share Posted November 10, 2012 I just wanted to add that when explaining symptoms to your hubby, it helped for me to correlate them to something he can relate to. Like 'you know when you're drinking and standing up and the world spins....' or 'that 2 seconds before you vomit and you're sweating, heart pounding, shaking....'. I think he understands better that way. Quote Link to comment Share on other sites More sharing options...
StandUpSitDown Posted November 12, 2012 Report Share Posted November 12, 2012 Let me turn the tables a bit, as a guy with POTS.If your husband were as sick as you are - think deeply about this for a bit - how do you think you'd be dealing with it? If he were unable to work; if he needed help with so much. Imagine if you were a guy - and you talk about the lack of sex drive. Imagine being that tired, nauseated and dizzy, and being a guy.I am lucky. I work in a field (computer programming) where I can work from home most days, and do so with my feet up, so I earn an income without much physical exertion at all. Again, I am very lucky.My wife is wonderfully supportive. But she has admitted to me it was easier for her to do this because she still sees me as a provider. Psychologically, that's easier for her.The truth is, we sign up for sickness and health. And my wife honors that. But it sure as heck isn't easy for them, and so I try my best to cut my wife tons and tons of slack. She signed up for life; we made our vows. But nobody expects or wants this. It's hard - not easy. So I take her bad days in stride. Quote Link to comment Share on other sites More sharing options...
peregrine Posted November 13, 2012 Report Share Posted November 13, 2012 Mine and I have been seeing a couples therapist since January, and this is an issue that comes up every few visits. She keeps telling us to not focus on the physical side of the relationship (since everyone differs physically anyways!) but to think more about why we are together - what things we enjoy doing together (cuddling and talking counts just as much as more physically active stuff), what we value in the other person, how to focus on the intellectual and emotional sides of our relationship. If a therapist is something you can afford, it might be helpful; sometimes it's good to have a third party reiterate to the other person that "it is what it is" (my mantra), people differ, and that they're going to have to find ways to cope/deal if you're going to stay together (as painful as that is to consider)... Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted November 13, 2012 Report Share Posted November 13, 2012 I was talking to my hubby about this thread, we often hit times when it is just as you describe. Then, something will happen and we will be back in the groove again, finding joy in the simple things together. I once read somewhere that the stats for marriages where one spouse is chronically ill are much poorer than for 'normal' marriages. It really upset me and we talked about it, airing all of our anger/frustrations/worries. I guess the fact is that it's not just us patients who are suffering from chronic illness. Our whole families are suffering too. These are not easy times and we are ALL amazing for keeping going. A long time ago I asked a really old lady what she thought was the secret to successful marriages. She said something that was so at odds with modern thinking, but I can see how it works:"Stop looking after your own emotions. Just stop. Make your entire focus looking after his. If you are compassionate and loving above all things, keeping his emotional state as your number one priority, he'll stop at nothing to look after yours. Most people find it hard though, it means you have to trust each other."I can't say I manage this all the time. I get so frustrated sometimes and the comparison and jealousy creep in... it's hard to see someone living a 'normal' life and then feeling criticised when you are trying so hard to maintain stasis. But if I take a step back and consider how much he does that isn't 'normal'. How much he worries and how little he can do to make a big difference to the trajectory of my health, I just feel like I am lucky to have him in my world. Dysautonomia has hijacked our whole family, we have to hold on to each other and keep our marriage strong.Hold tight everyone, hold on tight. Somehow all of this has got to get better. Quote Link to comment Share on other sites More sharing options...
abbyw Posted November 13, 2012 Author Report Share Posted November 13, 2012 I appreciate all of your support. Thanks.I know that when we are in a good mode, we are doing what your wise friend said, Rachel. We are both being grateful for each other and seeing each other. I am so grateful to him for all of the slack he has picked up since this whole thing started and he is grateful to me for how hard I work to keep pushing. I think we both know that (men, don't kill me here) women push through sickness better than men do. When he is sick, he just checks into bed until its over. Women don't do that. This has been a year of struggling for me. Neither of us are thinking of ending this. He is frustrated about my not expressing my love, and I am frustrated that he is frustrated. I am in survival more. (It seems like on a permanent basis.) And romance just doesn't make it in the top 10 when you are in survival mode.StandSit I also work in computers,(technical writing) and work from home now, but just providing that income takes a lot of effort right now. Taking care of laundry, food, kids (I have 7) is a huge effort. Homework, cleaning. And trying to be nice to everyone around me once in a while too. I really do understand him, but I think he just doesn't really understand how hard it is to be doing all that while I feel jittery and weak. I highly suspect that if it was him, he'd be in bed and not feeling too romantic either.Sorry for the ramble. But again, I appreciate your support and understanding. Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted November 13, 2012 Report Share Posted November 13, 2012 Oh my. 7! abbyw, you ARE a hero. I have two and I simply don't know how you can manage 7 kids with all your health issues. I say it would be a miracle if you were able to get "jiggy wid it" at the end of a day with 7 kids even if you weren't so terribly sick! Amazing! My hat goes off to you! Quote Link to comment Share on other sites More sharing options...
abbyw Posted November 13, 2012 Author Report Share Posted November 13, 2012 Well, I had them before I had the health issues, and as I always point out, I didn't have them all at once, just one at a time ! - its not like I had 7 babies at once - we have quite an age range! My teenage daughters help a lot. They take a lot more emotional energy than physical energy. Quote Link to comment Share on other sites More sharing options...
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