Why can't they understand

[bugsy]

<span style="color:#CC66CC">Hiya Everyone

I just can't understand why my family doesn't understand where i am coming from. I have my dad apologising to me for what i am going thru, my mum telling just to have an hour then i will feel better then i have my husband asking me to try more.

Me and hubby have just had a 'heart to heart' conversation - he feels i am not trying hard enough and that i am spending most of my days sleeping or laying down - Does he not listen to what i tell him and that these stupid new pain meds that the doc as given are c*#p, he tells me he doesn't understand lupus fully and that nobody does unless you have (which i agree with) but he just feels that half the time i can't be bothered and blame it on the lupus.

Then i have my mum saying she doesn't like seeing me in all this pain yet she doesn't want me to start taking morphine at my age - that is just what my doc is saying too, i just feel like this is it for me - nobody understands me apart from you people here.


style_emoticons/<#EMO_DIR#>/Thanx.gif for always been here for me XxX jo XxX
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[macfamily53]

Dear jo

I do know what you are saying about family,but unfortuantely mine think that it is better not to disscuss it at all. I come from a big family and that can be good sometimes but not ussualy. They ask all the time soem of them how r u feeling even if they talk to you everyday. I would rather forget about it sometimes you know. I love it when you need them to do something for you they have no time to help. Well jo i know what you are saying thoguh. You should get some information for your husband,but if he is anthing like mine he will not read it but worth a shot. I am so sorry you are going throguh so much with fanily. You already have enough that you are going through just to deal with the disease. My thoughts and prayers are with you jo. Take care hun.

Tammy style_emoticons/<#EMO_DIR#>/flowers.gif

[jhmom]

jo style_emoticons/<#EMO_DIR#>/hugbetter.gif

I am sorry you are going through this. I know its hard for other people to understand what we go through, we can tell them all day long but until they experience it they can?t understand it. My hubby understands because he sees how I struggle from day to day but other family members don?t have a clue. Just do what you can do and take care of yourself! lubs ya style_emoticons/<#EMO_DIR#>/foryou.gif

[rwb200]

Hello sorry to hear about the problems with the family.
I can agree with your husband that no one but the Lupus patient can fully understand just what it does to them and how they feel.
How ever us as Spouses can learn more about it. Coversations such as the one you mentioned can be a very good start at this. But it is not the only answer at all.
There is a Ton of Educational Materials out there about Lupus that as a spouse we can look at and try to learn as much as we can. Much of this information is a very skimmed over version of Lupus and since it effects everyone a little diferent it can in no way tell us just what is going on or how it is effecting you. This is where it helps to have conversations with the person who has it. These conversations may be short and they may leave us with more questions but I have found that the more we know the more questions we have.
I know that a person gets tired of talking and answering questions and some questions seem completely stupid but they are honest questions because a person does not know.
Tru to continue the conversations with your husband and see if you can get him to do some reading to try and understand a little more, if at all possible it can be a big help to go to the Doctors and ask questions of them as well. A good Doctor understands that he needs to educate the family as well as the patient if at all posssible.

I found it very interesting when I went many times with my wife to her doctors to hear them say she is doing real well. Then one day when I was at the GP's office our conversation turned to my wife and he told me that your wife is not capable of vigorously. I questioned this comment since we had been hearing how well she was doing. He said she is doing well. But well for her is not well for us. She has problems that you do not have and your well is alot better then her well.

It can be very hard to understand that when you have a family memeber with something like Lupus that you have to adopt two sets of standards. One for how you are doing and one for how they are doing.
Well for a Lupus Patient is often only minor constant pain as opposed to excurtiating constant pain, well can be that the kidneys are only partially messed up as oppossed to very bad.

Sorry this is so long but as a spouce I'm trying to put out some of what I have found.

[debralee]

((((((((((((((((((((Jo)))))))))))))))))))))))))))) style_emoticons/<#EMO_DIR#>/hugbetter.gif

I am sorry taht yuo are having so mush trouble getting yuor family to understand what ouy are going through. I agree with rwb200 maybe yuor hubby could read up on lupus to help give him a better understanding of lupus. The boards might be a good place for him to see how it effects poeple and maybe give him an idea of the struggles we all go through in our daily lives.


As for the rest of the family I don't know what to tell ouy ...... I sort of just thrown in the towel on my own. style_emoticons/<#EMO_DIR#>/ermm.gif Unless they are willing ot educate themself there isn't mush ouy can do. I know it is all frustrating but try not to let it get oyu down.

But on the upside of things is that we are all here for each other. style_emoticons/<#EMO_DIR#>/foryou.gif

I will keep uyo in my prayers.

God Bless,
Deb
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[Wallypop]

I am very much in love with someone who happens to have Lupus... I've posted elsewhere that I'm very grateful for this site and especially those who take the time to post thoughts and feelings. Many of you have helped me more than you'll ever knowl

I try very hard to educate myself and understand... but I think I've figured one very impotant thing: sometimes you just have to love. Forget trying to understand, forget the facts, forget logic. Just love. Don't say anything... just hug (but not too hard).

The danger always seems to be forgetting that we're supposed to share things that are a part of us, and it has to be driven by love and (perhaps) compassion. I need to know when to hug, she needs to tell me how hard to hug. I can't live in her world... she can't really live in mine... but we can d*#n well create a world together.

My point is... much the same as we say you can't understand Lupus if you don't have it... I'm not sure we can understand what it's like to love someone who has it... the pain that creates... how love can make another's pain ours...

But if we focus on that, how we are affected... we've missed the point, haven't we? Let's not make the mistake of withdrawing into our own little worlds... particularly when it involves people we love. Maybe this is not about learning to live with Lupus... or learning to live with someone who has it... maybe it's really just about learning how to love each other.

[bugsy]

<span style="color:#993399"> style_emoticons/<#EMO_DIR#>/Thanx.gif style_emoticons/<#EMO_DIR#>/Thanx.gif style_emoticons/<#EMO_DIR#>/Thanx.gif

Thank you for taking the time to read my post and reply - from reading your replies which are from both sides of the story it is helping me understand what my hubby is going thru.

We had a chat this morning and he said that things didn't come out the way he wanted them to - what he meant was 'he feels that i don't make the effort' and find it all to easy to give in and live on the sofa. I have explained that i am getting to know my limits and try to understand me that i don't like living on the sofa i am only 30 and i would love to be out living it up like most 30 year olds.

So i have made the effort today - i started the day by cleaning out the rabbits house, i made him a pasta dish for lunch when he called home from work, i made him is dinner and this evening he is going out for a drink with some friends so i am going with him, i just hope i don't have to pay too much for what i am doing.

Thanks everyone for your support - you are a great support team and i would be lost without you all - take care, love and hugs XxX jo XxX


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[jude mack]

Hi Bugsy

It is very hard for someone who doesn't have Lupus to understand it. When my husband and I got together
he did'nt understand lupus or my colitis, although he tried he couldn't understand when I had a colitis flare,
there was no way I could walk or eat. I got upset one day and said maybe you should walk in my shoes for a day. {Never should have said that}

Well, he ended up on antibiotics which caused drug induced colitis, he thought he was dying. From that day on he has always been very supportive. Mind you I live with the guilt of saying that to him, because he really did look like death warmed over. But that was what it took for him to understand what I live with.

I have only one sister, and she does understand, but she is no better off than I am, so we usually feel lousy
together. But I do know how you feel and it isn't easy. I hope your family tries to understand you better soon.

Take Care
Jude

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[bluecarliepup]

style_emoticons/<#EMO_DIR#>/hugbetter.gif Hello JO,

Being in pain all the time changes a person well it changed me I know that. You have not slept in such a long time you are going to feel every word someone says differently than if you had you "coping" head on. I'm not just sticking up for Martin. Bryan and I to have these heart to hearts and his main issues are a) im not helping myself and style_emoticons/<#EMO_DIR#>/cool.gif my diet is so poor the weight im carring "cant be good for me". Ive told him that right now i couldnt give two hoots about my weight, all I was is a nights sleep without being woken 5/6 times a night in pain, I've also told him that he hasn't a clue and while he sleeps like a baby i am sobbing into my pillow as my body hurts so much. When I gave up work his response was "if only you could have worked on another 5 years it would have been easier money wise"

I still stick to my theory that the main problem for partners is they feel helpless, they can't fix us and don't understand how it feels to be totally exhaused every minute of the day because pain is so tiring.

style_emoticons/<#EMO_DIR#>/afraid.gif Im sorry I don't have any answers for you I just would like to tell you you are not alone. I sat Bryan down one day and said to him that him pushing me like some sort of Mr. Motivator is the last thing I need, a bit of kindness and understanding would be nicer. Bryan isn't into joining forums or talking things through with others who deal with the same difficulties, so I tryed to imagin my husbands worst pain one that makes him made and keeps him awake, not easy as he is so bleeping healthy but I found it and I sat him down and said to him "remember when you had toothache and couldnt get into the dentist for a week, you were hellish to live with and the pain dragged you down, well live with that pain everyday for a month or a year then come back to me and tell me how I should diet and exercise" It worked I put it back onto him. Im not sure if you could do that with Martin, it did however work for me.

When I was put on morphine my mum cryed, I got mad and told her to live with it, she didn't need it or have the pain I did. I felt she was and still do at time that she goes for the simpathy vote and tell everyone her daughter is poorly and she cant cope. well it may work on her mates but not me.

Families are so complex I avoid mine like the plage style_emoticons/<#EMO_DIR#>/sad.gif so i can use my energy on what is important and right now thats me and the kids. Dont try too hard to please, the last thing you need is more pain and it may reinforse what Martin already thinks, it could end up with a "see look what you can do when you put your mind to it"

Sorry for the length of the post. style_emoticons/<#EMO_DIR#>/oops.gif You have so many friend here Jo and you will be supported 100% by us. As you have done for us. I hope your doctor does the right thing on Tuesday and gets you meds sorted, scream shout and most of all cry demand some relief, tell him how it is affecting your family life and your marrage.

Please keep in touch. And you know where I am if you need anything.

Sam
xxxx

[chelle]

I am so sorry that you are having such a hard time with your family - and I understand that marriage is a compromise and you feel the need to try harder but PLEASE do not try so hard that you pay for it - cause trust me family has real problems understanding the bartering we do do with our bodies to be able to be involved with them. They have a hard time understanding that a night on the town leads to a week of exhaustion is the price our bodies charge to be active.


I am sure that hubby loves you but it is hard to understand what is going on with our bodies. I sometimes wish they could walk one day in our shoes then they would understand - - -Please continue to keep the lines of communication open with huibby and please pick your activities carefully. Your family loves and needs you and you have to be aware of the bartering we do with our bodies till they are able to understand.


Be good to yourself Jo cause we are ultimately responsible for our health and just keep communicating.
Luvs Ya
Chelle style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/wavey.gif style_emoticons/<#EMO_DIR#>/goodvibes.gif

[LWL2002]

style_emoticons/<#EMO_DIR#>/hugbetter.gif ........Bugsy!........Laura (LWL2002) style_emoticons/<#EMO_DIR#>/foryou.gif

[lenabuck]

Hi Bugsy
It is hard when family doesn't undrerstand. My family sounds a lot like your. They just will never know what being you feels like on a day to day basis. My family thinks I should just get over it, that like you I should just try a little harder. They, my aunts, are all over 40 with small children and feel that if they can work and manage their family I should be able too. Not the case. I take pain meds (though not as strong as morphine) like candy. If thats if what you need than do whats best for you. If it alows you to fuction or at least not be in pain do what you have to do. You and your hubby are right if people dont have lupus they just cant fully understand. Things will get better. We are here to understand when no one else can. Please pm and let us all know how you are doing and what you decide about your meds.
Lena buck

[Wallypop]

<div class='quotetop'>QUOTE(bluecarliepup @ Nov 3 2005, 11:37 PM) Quoted post</div><div class='quotemain'>
I still stick to my theory that the main problem for partners is they feel helpless, they can't fix us and don't understand how it feels to be totally exhaused every minute of the day because pain is so tiring.
[/b][/quote]

I'll certainly agree with that in principle and in part... it's what I was alluding to in my post when I said that one thing I've figured out is that sometimes you just have to love.

It was not a easy lesson for someone who is by nature a "fixer."

But my Love was patient and together we are learning. She is helping me to feel less "helpless" - in part by teaching me how to just love her and how much that helps. She doesn't tell me that I can't understand, she loves me for trying.

We don't get it perfect, but what seems to be working for us that we are trying to manage, not fix. As an interesting aside, I've been a hospice caregiver on several occasions in the past. One of the most difficult things for a caregiver is the instinct to fix, to heal. We want to feed the dying patient who has no appetite... we want to encourage them to "get up" and "keep going." The best caregivers learn at some point to supress those instincts and to manage the process that's taking place.

It's a horrible analogy because it's about death, but it's a great analogy because it's also about health and life. (Another important lesson for Hospice Caregivers is that it's about really about life, not death.) I've speculated that those experiences helped prepare me for this. My love and I are learning to manage the processes of life and love. We can't fix a lot of things, but we can manage them.

But I also want to emphasize again that it's so important not to withdraw and, in a sense, "live in a Lupus world." Don't shut out your partner, even when he seems stupid and uncaring. I applaud you Bugsy... I know you need to be cautious with "trying," but so much of this is sharing and both of you doing what you can do, admitting what you can't, and figuring out how to manage all that.

One of the things I truly value about my love is that Lupus is not her world, I am. She is not my "Lupie" she is the love of my life. I am not her "normal." I am the love of her life.

No, I am not writing a romance novel... merely making the point that sometimes it's easy to forget that we are in this together. Just because a husband doesn't have Lupus that doesn't mean he can't have needs and I'm not sure that his desire to feel some effort was anything but loving and compassionate... as is Bugsy's response to it. If they keep having those "chats" and both keep making the effort... well, who knows what they will accomplish because they are sharing a world and a love.

[keebler]

Jo,
style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif
Take care of yourself, please don't over do.
It is hard for our spouses to understand. I am running into this right now.
They really cant fully understand what we are going threw. Only someone who has gone threw all the pain that we experience knows what it is like.
I try to look at it from my husbands side and try to understand where they are coming from. Right now Im trying to find a book about lupus that talks about lupus fog. (having a hard time explaining that to hubby)
Just take care and hang in there.
Keebler
style_emoticons/<#EMO_DIR#>/wavey.gif

[Lis]

((((((((((((((((((Jo))))))))))))))))))) Sorry you are feeling so low about all this. It really is difficult for others to understand how this disease affects us. My husband is very understanding about how I am, but goes completely over the top with frustration about the medical profession and can't understand why I'm not down at the drs banging on his desk every 5 minutes for answers. I realise that is part of his pain of not being able to make things better for me. When you love someone seeing them in pain or being unable to live life to the full is painful in itself and very frustrating. The rest of my family don't and won't even try to understand so I've given up with them and when they ask how I am I just say 'fine thanks' As I look ok most of the time they accept that. However, since I lost over 3 stone in weight they are starting to worry - amazing how looking worse than usual gets them trying to understand!

Take care Jo, you know where we all are.

Love
Lis style_emoticons/<#EMO_DIR#>/wub.gif

[bluecarliepup]

Wally,

sorry I was talking about the men in my life, not all men that would be unfair. My husband is the classic fixed hunter gather and i love him so much for his inner need to provide for the family and need to keep me safe. I call him my bat fink (a cartoon charater a bat with wings of steel and he wrapps them round people for protection). He is like you learning and im glad he is. I still get sent to bed and tucked in but i know that is pure love

I hope i didnt cause offence

Sam (bluecarliepup)

[Wallypop]

<div class='quotetop'>QUOTE(bluecarliepup @ Nov 6 2005, 04:04 PM) Quoted post</div><div class='quotemain'>
Wally,

sorry I was talking about the men in my life, not all men that would be unfair. My husband is the classic fixed hunter gather and i love him so much for his inner need to provide for the family and need to keep me safe. I call him my bat fink (a cartoon charater a bat with wings of steel and he wrapps them round people for protection). He is like you learning and im glad he is. I still get sent to bed and tucked in but i know that is pure love

I hope i didnt cause offence

Sam (bluecarliepup)
[/b][/quote]


Huh? I was not in the least offended! I was merely trying to explain that it is difficult on both sides of the equation. If it came across otherwise, it might be because I sometimes feel this site has a "us lupies have to stick together because no one can understand" attitude that doesn't help those of us who love you and want to understand. I thought, for example, that it was pretty cool that Bugsy recognized hubby had a need is willing to try... I understand the need for caution, but found it a bit disheartening that so many seemed quick to discourage her and advise her to take care of herself. Sure that's important. But it's also important to take care of your partner as best you can.

See, I could be a bat fink. LOL

Batfinks need love too and sometimes our wings get heavy.

It's all about sharing and helping each other. I'm glad you have a good bat fink! LOL