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Spanglishqueen
07-04-2009, 06:40 AM
Well I'm a little bummed, because I don't think my hubby is handling the "auto stuff" well. :sad2: He's gone into complete shut me out mode---unintentionally of course. I've tried to discuss it with him in the past and he tells me it's stressful at work and its miserable at home so he has nowwhere to turn. I completely understand and I try to do things with him so we can focus on other things he tells me he doesn't like doing things with me anymore because I always look so tired and beat up and he can't have fun when I feel that way. As I stated in another thread he's gotten really into the working out, which is awesome he's lost over 90lbs and has ton of new friends. The problem is I think he's created another world apart from me :unsure: He has been going out alot which again does not bother me what bothers me is he never invites me anymore, I think he feels if he brings me in I will be the "party pooper". I am trying on my own to do things like joining roller derby, doing things with the dogs, hanging with the girls, etc... But when it comes down to it I feel all alone. :crying6:
I'm not sure wht else to do I think I'll try to see if he's receptive to going to counseling with me because I think we would both benefit from it, but truly I think he's emotionally dead now and it makes me sad because I don't want to think of what that will mean for us. Oh well I apologize for being so depreswsing on 4th of July a day of fun and joy but I think I needed to just finally say this out loud before I burst. I hope EVERYONE HAS AN OUTSTANDING DAY--DON't WORRY I WILL TOO I'M ABOUT TO SPEND TIME WITH THE WITH THE DOGS, GRILL AND HAVE A BUD!. :beerchug:

Delphinia981
07-04-2009, 07:03 AM
I was in your shoes, too. Men are funny about this kind of thing. It took my hubby time and patience to get to where he could "handle" what I'm going through. Counseling is a good idea, but see if he will go with you to your next rheumy appt. People fear that which they do not understand...which is probably why he's shying away from you. He's trying to come to his own grips on the situation. Give him time, but gently push him in the direction of understanding...and don't be shy with your feelings. Let him know how much you need his support...that may be the kick in the seat that he needs. I hope you have a great time grilling out today! Feel free to message me if you want to talk further...

scubagramplit
07-04-2009, 07:38 AM
sorry to hear what you are going through. It is hard for us men to understand sometimes, maybe that is why God is allowing me to be tested with this, if you ever need a male perspective please feel free to send me a message. I truly wish you the best of luck in your trials. Have a good 4th. God Bless. Jim.

ButterflyRN
07-04-2009, 08:10 AM
I'm sorry that you are going though this rough patch with your husband. Unfortunately so many people don't know how to deal with a family member being sick because one it's unknown and two it's hard to see. I myself feel so bad that I have to put my husband through all of this. Sometimes I wish I would have never fallen in love with him to spare him, but that's not really 100% true. I don't want him having to deal with my issues, but I love him.

Couseling may be a good idea if he is willing to go. Also, check out the Lupus foundations website....lupus.org. They should have a couple good books on dealing with sick family members. Also there are websites out there for those with ill spouses. That too may be beneficial!

Keep you head up and know we are all here for you!

Angel Oliver
07-04-2009, 09:46 AM
Oh im sorry to read you are going through this,must be so stressful and sad for you.Remember we are here for you always.

lots of love
Amanda.xxxxxxxx

SandyR
07-04-2009, 10:42 AM
Spanglishqueen - I am sorry to hear that things are not going well for you right now. I think it's a good idea to invite your hubby to your next rheumy appointment. Perhaps you can also invite him to join our little family for another perspective for him. Enjoy your day today as much as you can.
Sandy

rob
07-04-2009, 11:50 AM
I found myself in the same situation a few years ago. She couldn't, or wouldn't accept the fact that I have Lupus. She would tell me that it was embarassing to be seen with me, that I was "letting myself go" in the looks and physical fitness department. This was way back when I was first diagnosed with SLE. Of course, I was really sick and on prednisone at the time, but it didn't matter.

Counseling can be a great thing, I hope your husband is open to the idea. I'm sorry you are being left out of so many things he does. I think being in a relationship and feeling totally alone is worse than just being single and actually alone. I hope you can find some common ground and get past this. I understand how you feel.

Rob

Spanglishqueen
07-05-2009, 07:59 AM
I want to thank all of you for your support. Today the hubby and I finally sat down and talked and cried for a good hour :cute: We both think counseling is a good start so we can understand how each other deals with this issue. When we were talking he let me know I am not dealing with it well I'm always down or angry with it. And I think that may have been a reason he was leaving a lot too. We are going to try the hardest to make it work but we are okay if we can't make it work. We've been together 11.5 years married 2 and we are each others best friend. If we were to ever break up we would still be good friends, but we are trying to avoid that. I am glad I had the courage to vent here because it gave me the courage to talk with him which made me understand his point of view which I was taking for granted.
P.S. Do any of you want to move in with a grumpy moody 32 year old hispanic woman with "auto stuff" :laughing: :joke:

Spanglishqueen
07-05-2009, 08:01 AM
By the way any ideas on where we can find coiunselors for Lupus and auto immune isorders that work with couples?

scubagramplit
07-05-2009, 08:11 AM
I would suggest checking with your reumy for a recomendation and also take him with you to your next appt. It has to be very hard for someone that does not have lupus to understand what we are going through, especially when we start to question our own sanity with what we are going through.

Spanglishqueen
07-05-2009, 08:52 AM
Sanity?!?!? what is that :laugh: The only thing keeping me sane is my sense of humor and this group at the moment. I luv you guys thanks :hug:

mountaindreamer
07-05-2009, 04:51 PM
hi spanglishqueen,

so sorry to hear about the trials that you and your husband are experiencing. I also agree that counseling is worth a try. As far as finding that right counselor, why don't you see if there is a local lupus foundation in your area. This group might know of some drs. that can help. Also, check with your rheumy....maybe he/she knows of a dr.

good luck....so glad you two talked and cried together, this shows the love between you.

lucky7
07-07-2009, 04:29 PM
WOW Spanglishqueen, i find your posts ironic to me today. I havent been on in a few days due to an emotional overload, part of it because of marital issues as well. I can SO RELATE to you, i actually thought i was on a better path than apparently i AM on. My husband has been GREAT in helping with all my appts,finding new drs,going with me to ALL of them,sympathizing with me on my flares,veging with me A LOT these days ........... BUT now im finding out that its hard for him to LOOK at me as a WOMAN and as his WIFE not his PATIENT to take care of. I used to be so much more active with him as well. We used to go to the gym ALL the time together, now i work out at home, we went bike riding a lot, saw movies on a regular basis, dinners out....... Im trying to figure out how i make myself the WIFE and A WOMAN to him again. THis along with other family issues with my mother,father and sisters,well, lets just say that im just TRYING to stay sane in these past weeks. YOu are not alone and i SO HOPE you can work things out in therapy, you are in my heart and my thoughts:cute:XXXXXXX

debbie-b
07-07-2009, 06:19 PM
I am so sorry for all you guys with non compassionate partners. It is hard enough to deal with lupus, it must be so much worse having to go through this ugly disease by yourself. It makes me angry to think that your partners act like that. What if the shoe was on the other foot? You would take care of him/her. I don't understand. I have always appreciated my husbands loving and caring way, but now I thank God that I have HIM as a husband. I want to send all of you gentle hugs and hope things get better for you.

Debbie

lucky7
07-07-2009, 06:44 PM
Thank you Debbie:cute: I do want to say though that i didnt want to come across making Carl look like he doesnt have compassion for me and my illness. That he does have, he has been my rock and my friend in so many ways. He feels awful that I feel bad, he wishes it were him he said. He wants me to feel like i used to for MY SAKE BUT, its been takeing its toll in the intimacy department of our relatioship. It hasnt until just recently. Ive been sick worse and more often than ever during my illness,so our relationship has changed. Its hard to be the sexy wife he longs for when hes taking care of me all of the time and he sees me daily feeling worse than the day before.I get rashes i never had before,bruses all over my body,joint inflamation,dry eyes etc. This is another adjustment that makes ME feel unattractive and he doesnt want me to feel this way but this is hard for him as well. Hes turned into caregiver.

Danica01
07-08-2009, 02:22 AM
My heart aches for the two of you. I wish that I coud come and we could have a slumber party without the boys!!!!! I am justsorry. This is a tough situation that may result in a tough decision that will change your life.

I was dating this guy for over five years. He always went out without me and I just figured this was his way of venting and dealing with my Lupus. He was with me when I first got sick, purposed, married and then he left. He said that I was the biggest mistake he had ever made. He did not want to be married to someone who may not be able to have chilren. He did not want to be a nurse for the rest of his life. He never went to a single doctors appointment with me. He ran fromit as fast as he could. We went to counseling, he went once and never went back but I contiued to go through it for myself. I finally found out that while hewas out he met some young girl who was as healthy as a horse and thatis wherehe was spendinh his time. I felt so broken and lost but I woke up and realized that I was more alone when I was married to him than I was living on my own. That is where my life changed. I learned so much from that experience. I had a choice, I could through all of that and come out the other side a little scratched but other than that....perfect, or I could come out the other end damaged and angry for the rest of my life. This may surprise you, I would go through it all over again something wonderful came out of the process.......Tim.

Tim is an angel that walks though life for me and on good days we run through life! He knows my limits and makes it possible for me to do a lot of activities even when I am sick. I remember the first time I told him about my Lupus, I really though he would never call. By noon my e-mail was flooded with information about Lupus and they were all from Tim..........well, he is sleeping right here tonight. He knows my doctors, understand my medicine and what it does and he even will ask questions that he may have. He is very active and I love this. I really hope that everyone can feel this type of support and love at least once in their lives. Don't get me wrong we still have to work at things. We are loosing our home and biils can not be paid but we hold on to each other and in the mornong we still look into each others eyes and smile. Laughter fills a house where sorrow could take over at any minute. I am in love with my bestfriend and the luckiest person in the world.

The suggestions that were given are wonderful. You should try cousneling as a couple but every oncein a while you should see the counselor individually. This will allow both of you to vent to the counselor without the worry of hurting your spouses feelings. Go pick up a couple of books. I even think they may have Lupus for Dummies! That would be good and very easy to understand. Give it him to read and even offer to read it with him so that if he has any questions you are right there to answer them. No matter what, you two have taken the first step just by confronting the situation and allowing each other to talk about what they are going through. Every once in a while I will stop and ask Tim how he is doing with my Lupus. This allows him to open up about anything he may worry about.

Just keep communicating. You are both brave, loving woman. Yes, you have lupus but you are amazing and he needs to stop and remember he is the lucky one :redface: They also need to be reminded that you two may not be the only ones sick in this lifetime. They could develop cancer or anything else and I guarantee you would not think twice about taking care of them. They are just silly at times! Hold onto your love through all of this and everything will be fine :smlove2:

debbie-b
07-08-2009, 03:58 AM
Thank you Debbie:cute: I do want to say though that i didnt want to come across making Carl look like he doesnt have compassion for me and my illness. That he does have, he has been my rock and my friend in so many ways. He feels awful that I feel bad, he wishes it were him he said. He wants me to feel like i used to for MY SAKE BUT, its been takeing its toll in the intimacy department of our relatioship. It hasnt until just recently. Ive been sick worse and more often than ever during my illness,so our relationship has changed. Its hard to be the sexy wife he longs for when hes taking care of me all of the time and he sees me daily feeling worse than the day before.I get rashes i never had before,bruses all over my body,joint inflamation,dry eyes etc. This is another adjustment that makes ME feel unattractive and he doesnt want me to feel this way but this is hard for him as well. Hes turned into caregiver.


You know, I can kind of understand that, from your side and his. If I was as young as you, I would feel the same way you do. My husband and I are at a point now, where sex is not that important anymore, it is still somewhat important, but not the way it used to be. But we are a little older than you. But I can understand where you are coming from, I don't feel attractive or desireable and wonder how could he be wanting to be intimate with me. I have all the problems you have, plus I have gained over 30 pounds. I hope you can find a way, to work all this out. He does take care of you and that is important.

Debbie

Spanglishqueen
07-08-2009, 04:49 PM
First of all to all of you who have had someone leave because of this disease, I am sorry that you were left alone during this, and that your heart was broken. To those of us dealing right now, I am sorry we feel left alone during and our heart is breaking. I too did not mean to portray my WONDERFUL man as a mean ogre.:surprised: He has been through so much for me and done so much for me I would never consider him the bad guy in this. What is good as I said earlier is we have been talking about all feelings Lupus related or not. We have both discovered several habits we have fallen into. I actually fell into a denial depression. I denied I was depressed, I denied I was eating bad, etc... And I actually ended up turning into a person that complained "why me" all the time. Whenever I'd get a diagnosis I'd start dealing then they'd yank it away, this went on for over a year.
I think I am finally out of that vicious circle and I plan to stay out of it with counseling, good eating habits, and exercise. I don't think I won't flare or feel bad but I will be strong for me. He has been strong for the both of us when I wasn't strong for anyone, it's my turn now.
We actually were talking about how would the other person survive financially emotionally if we split up. He wasn't concerned for him and I wasn't concerned for me. There is still hope and I am very confident we will make it. I have a lot of working to do because like lucky7 I too feel unattractive, I have no sex drive. He actually asked me if I didn't find him attractive anymore.:puppy_dog_eyes: I absolutely do ...check him out on my photos he is hot :biggrin: I just don't feel attractive. So thank you sooo much for all your support, we are working on it and I will keep everyone posted. :hug:

Danica01
07-08-2009, 11:30 PM
The first step is communication and you took that and I proud of you for that. It takes a lot of courage to talk about something that makes both of you so sad. The men in our lives are never really bad, they just have a different way of dealing with things and can never fully understand what we go through because they are not sick and do not deal with the daily limitations we do. I think sometimes I wish Tim could really understand but then I step away from the situation and realize what I just did, I basically wished he had Lupus and then I take it back. It is a struggle at times for all of us, the sick one and the healthy one. Just remember, when he is distant you talk to us and you vent to us about how you feel. This gets it all out in the open for you and you will build the courage up to let him know too! The good thing is that once the communication is opened, it does get easier. Hang in their love and remember, I am here for you night and day and our hearts do heal:hug:

lucky7
07-09-2009, 02:12 PM
Hi Debbie:cute: I understand what YOU are SAYING as well. I have heard people who are older than me say the same thing about sex in the marriage. We have been together for 19yrs, married for 4 of them and we have ALREADY gone through so many CHANGES because of age and because of the time we have spent together. This area is one that i believe we arent due for yet. It bothers me to be looked at as his PATIENT, he says he DOESNT WANT to LOOK at me this way BUT how can he not when it is what it is. I think what hurts me too through this issue is that my whole life i have been so insecure. I have gotten better over time BUT i know men are VISUAL and now here i am sick and im not getting any younger as well. I try to not compare myself to others BUT i find myself doing it, especially since ive been ill. Im so much more emotional than i have EVER been too. I have my ups and downs like everbody else, i will get through this:yes:

lucky7
07-09-2009, 02:15 PM
Oh Danica, how sad, i am so GLAD though that you took something from your experience. GOOD FOR YOU!!!! I am also HAPPY that you have Tim in your life now. :cute: YOU DESERVE that!!!! You have a GREAT SPIRIT about you, ive thought that since the day i joined the forum!!!! HUGS TO YOU!!!XXXXX

lucky7
07-09-2009, 02:19 PM
WOW Spanglishqueen, you hit the nail on the head when you said we get into bad habits or rituals. That is so true. I too do that, which in turn Carl does. We have this cycle going until I usually figure it out and work on breaking it, hes not so good at the figureing it out part! LOL I wish the best for you and i KNOW you will get through this!!! This is just another hurdle marriage is good at throwing at you!:laugh:

Spanglishqueen
07-16-2009, 03:15 PM
Well just wanted everyone to know I found a Doc and hubby and I went to 1st appointment yesterday. Not sure if it will help but at least it's a start Rick has never liked "shrinks" as he sees them but he is willing to try 3 appointments to see if it helps. Which I think is a wonderful sign.
HeHeHe we have a rule of 3 when watching new TV shows we always give it up to 3 shows whether we determine if we want to continue watching or not so I had him apply that to the doctor too. We both laughed and agreed.:laugh:

BonusMom
07-16-2009, 08:10 PM
Best of luck in getting DH to honor his commitment to you and the rule of 3! Although three visits isn't a lot, hopefully, the "shrink" can motivate DH to keep coming back for more.