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Hello everyone, I haven't been on here for a while now. I've been way to sick!! I have SLE and it has just about got the best of me. At first when I was still able to do the normal day to day stuff,cleaning,cooking, grocery shopping,taking care of my son,everything etc... My marriage was ok and I got the support I needed. Lupus was just as bad but I had'nt had it as long so I could push myself even in pain.

THen it got so bad it has been unbareable at times. I have'nt been able to leave my house. THere have been days that I am ashamed to say that I was'n't even able to bathe. This coming from someone who use to be as fashionista so to speak.

Well that's when all the verabal smart cracks and somtimes cusses started. I cold barly hold my head up and I would ask my husband for something and he would say I have to work why can't you do it. All you do is sit around all day.I know he is tired practically wore out but Like I told him. I still can't help it. Lupus isn't going anywhere. He ignores me. Cuts me off as if I don't exit in the middle of a conversation. Everytime I try to talk to him he shuts me up quik!!!When I ask a question he is rude and says why are you just trying to start an arguement and I am only just trying to talk to him.

I have put on weight from the steriods and I have had so much pain I really thought my life was going to be over a weeks ago.I was crying which I admit I have done alot . With all the pain and meds it tends to make some one emotional!!! I CAN'T HELP IT!! I have ask him to go to my doctor visits with me. He takes off work to take me but will not got in the visit with me.He says why do I need to go when you tell me everything. I get that he's just plain tired!!! BUt how does he think I feel.

My RHEMY told me that if I wasn't able to stay at a low dose of steroids I would be dead in 10 years. I told him and he said nothing at the time. Later out of anger he said what do you want me to do plant a tree .He will not let me talk he shuts me up period. He want let me talk about anthing. He has no respect for me anymore as if lupus were my fault. When I tell him that he says that is what I want him to think. Since I have been really bad and unable to have sexual realations with him he has gotten so mean. Which I understand but it I can't help it,I just can't!!Then when I finally get a little better he has hurt me so bad and refuses to apologise about anything at all. It is difficult for me to be close to him. I am not only dealing with SLE I am hurting emotionally. He will not apologise. I have to and have in the past for my son's sake, but I just can't anymore.

Fighting lupus has taken all I have and then some. I don't know what to do.I stay in a house day to day and really can't say much of anything. I mean just everyday chit chat. Isn't that wierd. I know I am not,but sometimes i feel like I am going crazy.I am not trying to be stubburn but he needs to make things right with me.

the other night I was extremely sick and I realise he was tired and had to get up early and I would have never botherd him but I was scared. I was crying and said I just didnt know what to do.I was in so much pain in my leg and neck I also felt like I was going to have a panic attack. He said well I have to go to work early decide if you want to go to the hospital it not I need to got to bed. In other words get out and let me get some sleep!!

He's been mean before but I was so sick, something happened to me that night. I just came and sat down and prayed. I could'nt believe it. It is like I tell him and my son I know ya'll are use to me being sick but I am still sick and that just means it's worse becase it is wearing me down and I have had it a long time. I am so confused. I have tired and tried to talk to him but he always says I am trying to argue. He use to bring me flowers,but no more.He gets my medicine for me and food but other than that we are strangers. I just can't believe it. I told him if he were sick I would help him in any way I could because if he got better our relationship would be better.

I have begged him to help me. He just goes to work and ignores me. He has said he hates me. I just wish I could get well enough not to have to live in a silent house. I am very lonely!!!!!!!!!!:(Believe me I am not saying I am not guilty to.But he has literally had to life me up and down out of the bed or of a chair he knows I m no fake.So why,how can he just change on me and say the things that he has. I am so hurt !!!!!!!!!! I don't even know what to do..... I just live in mostly silence to keep from speaking because he will say I am arguing and I refuse to argue in from of my son any longer because it is not fair to him.It's verbal abuse isn't it???? (brain fog/stiff hands):sad:
 

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Rene I'm sorry you are going through this. I don't know why but the ones that say they love us hurt us the most. Mine is coming around now. He knows how tired I get. I am lucky. But my family does think I can just tell it to go away. I try to find something to laugh about everyday but I am what you would call the class clown here at work.

Just know there are others that understand here. That is what helps me.

Stacy
 

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Hello Rene and hugs :hug:

I'm so sorry you are going through all this. I can't really answer your question and I don't think many could as to do so would be to pretend that we knew both you and your husband sufficiently to judge and that would be something I wouldn't want to do either way.

Lupus is tough on everyone and it sounds like there is a very serious problem going on with you both communication wise.

For me one thing stands out here. I remember you telling us about your doctor and his stupid, ignorant and uneducated comment about steroids :mad: and I remember most of us telling you that you absolutely have to find another rheumy, at the very least for a second opinion! Your lupus is clearly not controlled and you need a lupus specialist dealing with this and helping you regain some quality of life for yourself and the rest of your family.

On top of that I would ask your husband if he would consider going to some counselling for the pair of you. This disease is a dratted thing and it can change us and rule our lives to an extent we would never have thought possible. It can be so very hard for another person to accept that and to know how to deal with it. Some people can be hurtful and aggressive just because they don't know what to do to make it better... sometimes we too change to an extent that, without wanting to we are withdrawing into ourselves or more irritable and we just don't communicate in the same way. In essence we are no longer the same person and that can be a very hard thing for a partner to cope with.

I totally understand your feeling of not having the fight left in you. We have all got to that point at least once in life and it can happen for many reasons including illness. The thing is that you cannot afford not to fight. You have to fight and the first step is taking things in "hand" yourself and "acting" to get yourself another doctor and fast.

I would then seriously recommend some sort of help for you and your husband. If you can't talk to him about that, maybe write him a letter telling him how you feel and telling him how you would so love to get back to a closeness that you had before but that you need his help to get there.

People with chronic disease often need to adapt things but when it comes to your life with him two people are involved and two are needed to make it whole.

love and hugs :grouphug2: and a huge huge pile of strength :grhug:

Katharine
 

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Hi Rene,

The added stress of your relationship is only making the lupus worse. I agree with Katharine, you should suggest counseling. If your husband does not want to attend it still might be good for you to go.

Since you are in so much pain I suggest you call your rheumy to ask what else can be done. I don't know what medications you are on but there might be something you haven't tried that might be helpful. If you do not get any satisfaction I agree that a second opinion would be in order.

My husband does not like to go into the office either. He has a real phobia about doctor's offices and hospitals. He already does so much for me I don't push him to go.

Join us in chat sometime. I find it lifts my spirits chatting with others who understand.

Take care,
Lazylegs
 

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Hi Rene, I am sorry you are having such a hard time. Lupus affects the whole family. I have recently started to take anti depressants to help me cope better and it has really helped, I am much calmer. Maybe you could have a chat with your doctor and see if he could prescribe you something to help?

I think men get frustrated when they can't fix something and when lupus takes over everything. I work really hard to make sure it doesn't dominate our house. I use this site and chat to help me, then time with my husband is about 'normal' things. I am fortunate in that he is very supportive, but I do my bit in being positive and helping myself as much as possible. He doesn't come with me to the docs though , he hates hospitals!!!!

Try to get to another doctor so you can get some treatment. Once your lupus is under control you will feel better. I hope things improve for you soon. Be strong things will get better.

Take care

Deb
 

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I wrote the book on this topic...

Hang in there Rene,
Things will be better. Make sure you have "the best Lupus Specialist." I had to check myself into a major hospital when my Lupus Doctor could not fix me. It took two weeks, a team of doctors, and hundreds of tests for them to tell me it was Lupus (ha ha). I knew that. But, I needed a specialist to put me on the right medicines. Remission is right around the corner. Think Positive!!! Put yourself first. I am single. I was married for a short time. I have left alot of men because they didn't understand Lupus. One called me a Witch because I could not get in the sun. (I think that is funny.) What is funny is all those men seem to come around crawling when life kicks them in the ""@#$4". Then they understand. But by then you will be strong and say "Oh honey so sorry you are feeling bad, can I get you a cup of tea."
I know things seem hard now but somehow it will get better.
Sincerely,
Mary Ann
 

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Rene,

I'm so sorry you're having such a tough time.

Any relationship can become abusive at any point for a number of reasons. Some questions to ponder: Was your husband self-centered before you became ill? Was he abusive in any way before you became ill? Does he have a history of deception and betrayal? If you answered yes to any of these questions, it may indeed be abuse and you need an advocate. If you answered no to all three questions, then the stress of your illness (emotional, physical, social, financial) is taking its toll on all of you. Individual counseling will help you sort things out. After you have established a relationship with an individual therapist, couples and family therapy may help but only if you answered no to all three questions. If you answered yes to one or more questions, do not agree to couples or family therapy until you feel strong enough emotionally. If you can't get to an individual therapist, call a domestic violence hotline or a local family violence center for guidance. A book that might be helpful in sorting out whether or not it's abuse is Why Does He Do That? Inside the Minds of Angry and Controlling Men by Lundy Bancroft.

My husband was self-centered, deceptive and abusive before my illness. I have been in therapy and know what I need to do but I haven't been able to make it happen for a number of reasons, mostly financial.

If your husband wasn't self-centered, deceptive and abusive before your illness, therapy may bring the healing all of you need.

Best wishes -
Barb
 

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Hi Rene,

I am sorry you are going through so much :sad: hugs to you :hug:
you have already be given excellent advice from the others so I just want to send you strengthening hugs & offer support as we ware always here to listen.

I agree you really should think of changing your rheumy as the lupus is clearly not under control..I have done this recently & it was the best thing I could have done!

regarding your relationship I agree counselling would be extremely beneficial to you both..either individually first, then couple counselling ( if things were as bad before your diagnosis ) or together instead as Barb said..
only you can answer your own question renee as we don't have the full picture & I for one wouldn't want to take responsibility for someone else's life..but one thing is obvious and that is that you are NOT happy with the way you're being treated & you feel you have no support or understanding so that needs to be addressed.

I wish you lot's of luck renee.. I hope things get better for you soon on both counts.
hugs :hug:
karen xx
 

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Hi Rene,

I just want to say..I am very sorry. I am sorry your so ill, and sorry your hurting in every way possible Rene.

I will be here for you if you need to talk hon..

Your friend,
Sandy
 

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Hi Rene,

I am so sad to think that your having such a tough time right now and I am sure your story hits home for some of us here. Gentle hugs to you.

I agree with the others that some counseling may be very helpful and a new doctor is a must. I would fire him and go else where, a place where one will listen to you and hear what your saying.

Come here as often as you need to as we all understand what your going through and we are here for you.:wink2::wink2::wink2:
 

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HI

Hi

I felt i had to reply you really could have been talking about me!!my husband is just the same and to make it worse at the begining part of the year my dad was taken very ill and eventually passed away,i will add i was very close to my dad,at about the same time i found out my husband was seeing someone else purely platonic!!! His excuse was HE needed some one to talk to!! We rowed and he said he wouldnt see her again,but i found he was texting her the night before the funeral and the night of ,which was when i left him.He eventually talked me into coming back but things are by far thee same and to be quite honest dont think they will!!
I think this could have something to do with the fact that i have not felt well for so long lol

teresa
 

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Hi there,
I also felt the need to reply, however I have a slightly different opinion. I don't want to offend anyone because I understand it must be difficult in your situation and I have to admit I've never been in your situation. However, I don't understand how we as women believe that we "deserve" to be treated so horribly. Lupus or any other illness aside, the abuse that you are allowing yourself to accept should not be tolerated. I always think of the line Dr. Phil uses: "We teach people how to treat us" and if we are allowing others to treat us in a way that isn't supportive, then I believe it's time for you to begin thinking about YOU! I'm sorry if I sound harsh, that's not my intention, but we as women are always worried about others before ourselves. You need to take back your power and stand up for yourself! Take care and think about YOU for a change.

Angie
 

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Angie,

I agree with you completely BUT the problem is far more complicated and the solutions far more difficult than most think, including Dr. Phil, and it's important to provide support without judging. Sometimes, standing up for yourself and demanding better treatment is what leads to abuse or leads to more extreme abuse!

Also, finances do matter. I have spent many thousands of dollars trying to leave and divorce my verbally and emotionally abusive husband. The judge presiding over my divorce urged my attorney to urge me to drop the case because I would no longer have health insurance following the divorce because he was not going to order it and I had no other health care coverage. Because of my health problems, that was too big of a risk to take so I followed my attorney's advice and reluctantly agreed to dropping the case. Since then, my husband has been methodically hiding assets, my health has plummeted and I am spending what's left of my meager retirement savings trying to obtain diagnosis and treatment so that, hopefully, I can work again in the future. There is no longer money to leave, to pay for legal fees, to support myself. BTW, I applied for disability years ago when I couldn't even walk around the block and had a hard time dressing myself. I was denied so that isn't an option either.

The problems I face may be the same problems faced by others so please be kind and supportive rather than judgemental.

Barb
 

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I think it's important to remember since this is a public board that each and every one of us is entitled to express their opinion with courtesy. I in no way found Angie's post to be judgemental at all. By posting we invite people to comment and offer suggestions, some people may not agree with or accept those suggestions but members are entitled to express them nonetheless.

Rene I don't envy your situation in the least :hugbetter: It's an incredibly difficult time you are having and I do tend to agree that your Lupus being so badly controlled at the moment is one issue helping to feed this, so trying to find a Rheumatologist who you feel comfortable with should help you achieve a better quality of life. I also agree that counselling for both you and your husband either together or seperately should be started. Things can't go on as they are (((((((Rene)))))) and none of this is helping bring your disease under control :(

love
Lily
 

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Hi Rene,

I am sorry this is an on going problem for you.:hug:
The actions of your husband is only making your lupus worse.:( Stress for us with lupus (be it good stress or bad stress) makes it so painful for us. How is your children handling all this?

It does look like you need to find a different rhumey. Better lupus control would make a huge difference.
Plus counseling to see if all this can get sorted out.

Angie made good points in her post and I didn't find it offensive at all. If they don't want to change then why live with all that abuse that is going on.
After all when we post here we want to read all points of view from everyone.
Mostly we all should remain courtesy to each other.

Take care of yourself Rene.:hug:

Love,
Lyn
 

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Lily, Lyn -

I don't know how what I wrote could be construed as discourteous. I agree with Angie 100% and stated that. But, there was a tone of blaming the victim in what she wrote, which may or may not have been intended. I was merely trying to help everyone see the bigger picture. Not everyone has the resources or the support to leave a bad situation. And anyone who has ever worked with victims of abuse knows that the abuse begins or escalates whenever the victim tries to assert her/himself.

Barb
 

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Hi rene :hug: IMHO it is abuse whenever you percieve it as being abuse. Only YOU know what the whole situation is like....I agree with the Dr Phil analogy because at the end of the day we only have the power to change ourselves, we cann't change others....By far the hardest lesson I have learned in my life is that I am ultimately responsible for what happens to me and from time to time I still forget and loose myself all over again. If we choose to do nothing then that's ok but we are still choosing to do nothing. I experienced a situation but mine was with my adult daughter. The communication/misunderstandings and bad behaviour towards me got so bad in the end although it genuinely broke my heart I had to ask her to leave my home. The situation was toxic for both of us and talking only made it worse. Now I am kinda zero tolerant as my lodger recently got the boot for trying it on.

I would advise you to try and get some time to yourself, go have a long bath when your son's asleep. Step back and look at how the decreasing circle of the aurguments go, who says what and when? Join the dots, try not to talk to your husband about things when you feel ill or get drawn in to "take the bait" If he needs these scenes for him to cope then remember only you can stop the scene from playing out to it's toxic conclusion....I know it's hard but you need to protect yourself. Try not to say the first thing even if he has annoyed the heck out of you....don't verbally throw the first punch even if you think he deserves it...it sounds like you two need an intermediary sp?

I would also go to a local disability advice centre or phone them and ask about councilling for you alone. You need a shoulder to lean on and a voice of sympathy to look forward to....Change your Rheumy,,,,,Google audio books on depression, self empowerment etc buy them and listen to them even if you have to do it on an mp3 player in the bath....

Your a bright lady to acknowledge that things are so bad. You may not feel as though you are but just by posting on here you seem to me to be ready to start taking some of your power back.....

Hope you feel a little better soon xxx
 

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Discussion Starter · #20 ·
Thank You All!!

YOU ALL ARE WONDERFUL LADIES AND I APPRECIATE ALL THE ADVISE AND OPINIONS(pro's and cons)!!Lately I've been to sick to do anything I mean anything!! I am scared but I am trying to figure out what to do!!It is so difficult because of the finances and my son. My husband is not a terrible person!!He use to be a lovely person. BUt THis disease has changed him and I can't reach him and I finally realized that. Because I have tried so hard with cards and letters and talks and EVERYTHING!!! NOTHING WORKS!!! So I gave it to the LORD. WE just live in the same house and don't talk. Because no matter what and I do mean what I talk to him about we end up in a arguement and it will and is in his words ALWAYS MY FAULT!! SO I REFUSE TO GO THERE ANY MORE!!!MY health can not take it. I am trying to get better and I can not take any stress at all!!!!!!!I don't mean to be blunt but I know If iniciated sex and we did . He would treat me a little better. BUT that is not right. WHen I am to sick to to that he so mean and uncaring and when I am able he is somewhat nicer which really doesn't make since because sex is physical so if I can do that I am better and I don't need him as much to help me, but when I can't my health is really bad and that is when I really really need help with everything!!!NO Matter what I do,say,beg or plead! I can not make him understand that!! I just want to be able to see my 12 year old son everyday.We are close.Me and my husband have been married for 20 years and we did have some good times. But with the type of job he has and this terrible disease it has completely changed him. I don't completely blame him!!! A person can only take so much!! BUt he want admit he's depressed and he won't listen to anything I say. LADIES I HAVE TRIED :( try to help me, I told him If I could get better then I know we could get better again. BUT he just says nothing. OH WELL!!Enough said!! THANKS FOR LISTENING!!!!!!!!
 
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