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sorry ladies havn't been around for a while, life, kids, husband, this horrid thing we all have.
been kidding myself i could cope, emotionaly.!! all the stuff you get, back, legs, feet, hands, head, swollen fingers, sickness those stupid rashes... i have to deal with them, they get me down but i think i cope :( but all the emotions that go with it, the very big lack of support from my hubby i can't cope with... i had to go for a mri scan, which in turn mean they have brought my appointment forward to friday because they have results back early, which in turn brought up that i have a mass on my ovary, they have booked me in for a altra sound which i can gather why but i thought the mri would have more detail....so back to the slab again:worried: ...
so told my hubby, because rightly or wrongly i FEEL worried about it..all he could do was hold his head in is hand and bombard me with stupid sayings about why is this happening to us. no caring arms, no "its going to be alright"
maybe i am just being stupid... but for weeks i have been in more pain in my hips, keep being sick, losing weight, eat because i know i have to... while all he can do is start a barny behave horrid towards me like im sub human because i gave him mash for tea instead of chips :mad: ......
oh im so sorry ladies i just feel so low....i feel like i want to give up :sad:
 

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elisabethm
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Hi Melanie Ann sorry you are having such a hard time i think some hubbys are more understanding than others i cant complain about mine.But if he said to me about not having chips for tea he would be wearing the mash but dont think about giveing up you will allways get support from us on the site.What age are your kids are they old enough to give you a hand and one thing you are not is stupid i do hope you feel better soon let us know how you get on Best Wishes Elisabeth
 

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Hi there again,

I really don’t know what to say. I’m sorry that things are still so positively grrrrrrrrrrr for you.
I think it is normal to feel a little worried about any pending examination and any unusual findings on scans etc.

I used to have similar problems with my ex husband and I have to say that, looking back, I’m very glad he is ex. I just wish he had become sooner. I know I shouldn’t really be saying that as one case is not another and I’m certainly not suggesting you do anything drastic in that area but I really do feel that you have to address this in some way as you keep coming back and saying the same thing.
The health issues are, as we all know, bad enough but without support it can make life pretty unbearable.
I don’t suppose that your husband would be willing to acknowledge that you both have a communication problem and go to counselling with you?

sorry, I don't mean to be too brutal or blunt (I'm told I can be rather good at it :blush:) but I can understand your frustration and being one of these people who always feels "something can be done"...

sending lots of hugs and I hope that your extra examinations go ok,
:hug:
Katharine
 

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I ask myself that question every time I have a flare, severe pain or just plain unhappiness, fatigue or insomnia.

We have been given some awful things to deal with, but one thing I'm slowly learning is how much it really affects the whole family. Everyone has to learn to deal with your illnesses in their own way. We have the extra burden of feeling and living the pain. They have fears too, but maybe don't show it in the best of ways. I know I don't on occassion (okay maybe oftener than I'd like).

We were having some issues with our kids (2 teenage girls who had to grow up very quickly) and we started family councilling a few months ago (Dad and the girls went kicking and screaming of course). I have learned an awful lot from those sessions. Sometimes it is hard to see beyond our own pain, but everyone is suffering and learning to deal with "this" - the elephant in the room. Yes, sometimes my husband says or does things that really tick me off, but I wouldn't be here either if it wasn't for him. He has taught me to see how this is affecting him too. For example, I tend to be a martyr. He would get very angry with me for putting others first or generally not taking good care of myself. Now I realize that when I'm down, I bring him down because he has to hold up the fort and work. Then, if he gets sick, we are in even bigger trouble. I'm still not very good at taking care of myself but I see his point. He is scared too as well as the kids.

I guess what I'm really getting at is maybe family counselling might be helpful for you and your family. The hardest part is talking about it, but this is probably one of the most healing avenues available to us. By all means I encourage venting. We are human and we have our limits as well. Life is not fair. I'm at the point where I'm thinking of individual couselling for myself as well because I think I have different issues to deal with then the rest of my family.

Something to think about. These are just my thoughts, so I hope you don't think I'm out of line. If counselling is not an option, just opening the communication lines may help. I know this is very hard to talk about, but necessary.

And I do hope your tests go well. Sending positive vibes.

Nutty
 

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I think Nutty put that a WHOLE lot better than I did :blush: good job somebody is coherent around here!

Katharine
 

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Hi Melanie! A Lesson I learned

Hi Melanie! When I got really sick with my lupus, I felt as if nobody in my family cared about me. The husband did the same things as your's and probably a few things worse. I almost lost my marriage 8 years ago. Me and my husband have been together 20 years. We got married and two months after the marriage I started getting sick.
Men get frustrated. Hate to say it but they do! And some can't handle pressure. I know it hurt you deeply that he did not embrace you as you had wished and needed. Been there many times.
They worry but show their emotions in a different way. I made one mistake in my marriage and after being separated a while from him I saw myself in a different way. When we met we had a relationship that was fantastic. Then I got sick and every day when he came home all he heard from me was how bad my day was. How I was in so much pain. Everyday he would come home and hear Lupus and more Lupus and there was nothing else I could talk about. I got disabled and could not work, talked about Lupus 24/7 and the problems with the children. The problems with the bills and for some reason, I totally forgot that he had needs and wants and needed that special attention himself. The poor man would come home and hear me complain 24/7
Being apart from him for a year and 1/2 we missed each other and I had to change my ways some. I know longer talk about my lupus to him or my children. When my husband comes home I talk about the news, politics and ask him how his day was. The lupus subject never gets mentioned and I try to spend at least 1 day a week going out with him on Saturday alone eating breakfast out. The sad thing with some of us having lupus and other things illness wise is while our life changes drastically and it hurts so bad inside we still have a husband that needs to feel loved and appreciated. I know it hurt you deeply for I have too seen the same things and got very tiery eyed. But when he comes home from work today try and give him some special attention. A nice dinner, movie together and tell him how much you love him. Take away the problems with the children or the high electric bill and try to rebuild that relationship you once had. It will pay off in the long run. Not trying to tell you what to do here but just giving you what I ended up having to do and hope it may be helpful! Last week we celebrated our 20 year aniversary. He is my second marriage and helped me raise my 3 children and took care of my children while I was sick. But I took him for granted and he did the same thing. Maybe trying out something different will help rebuild the relationship and make it much stronger. I still stay sick alot and feel horrible many days but I just don't mention it much any more around my family. For some reason it has helped build a stronger bond with each other doing this. Wishing you my best:)
 

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'I still stay sick alot and feel horrible many days but I just don't mention it much any more around my family. For some reason it has helped build a stronger bond with each other doing this'

LBH

Surely your family should be the ones you can talk to and all help support each other ? or is that just my warped perspective??
Rachel
 

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I agree a lot with what LBH, but I really want to encourage you to talk about these things. Don't let the elephant in. Lupus isn't necessarily a bad thing, but it is what it is. It took us awhile to get there, but it is worth it. It means so much to me to have one of my family members say "How are you feeling today?. Yes, sometimes my teenagers are feeling me for to see what they might be able to do or go. But they asked and they respect my answer because they know I sick. And when I can do something for them or take them somewhere, I do so they know it's not always no, no and no. Sure, they are disappointed sometimes, my youngest can get quite angry, but they know the reason. This is there life and that's what we are teaching them. (They think they have it harder than everyone else you know!).

Anyway, please hang in there and try talking!

Nutty
 

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Discussion Starter #9
hi ladies,
i have read and reread your replies, talking together is good, keep trying that one, and will keep trying... funny thing is i dont talk about my health probs with my family or hubby, i try to just get on with it, but i would just like the support when they can see i am fnding it hard, but yes nutty i agree with you and have asked to see marraige guide but saddly it will be on my own, my hubby won't talk to anybody, and would be mad if he new i was going to... but like you say you can get smothered by this, and i really don't want to....
katherine ah lovely katherine, you blunt no ! you know what it is like for me with hubby, always smile with your honesty and thank you for it....:)
i am trying so hard, i will keep doing so. i will spend more time with you all aswell, you all have a knack of putting my feet back on the floor....well a kick up the bum.... much needed sometimes...i am the same as most people, great at dishing out advice, but don't always take it....that i will have to change...
thankyou for your support... i hope you are all well...
 
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