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sonmak
07-04-2011, 12:28 AM
Hi again, I need to turn to you again ;)
My husband is not coldhearted, he just doesn't understand and I think he's getting tired of trying. He is constantly dropping the usual comments like... i gotta work, someones gotta, or catches me sleeping 'again' and stomps through the house mumbling complaints about things not getting done. The other day my 7yr old told me I just gotta get some more exercise then I wouldn't sleep so much...wonder who's been in her ear :/. If I complain he gets angry and says he does get it, he just doesn't think I'm doing enough about it... why haven't i rung up about the arobics for RA exercise classes? Or the gentle yoga? you're just happy to have an excuse. (quote: I wish I could stay home and sleep all day!)
I showed him the spoon theory, which he read during the ad breaks. When he finished his response was that the story shows people showed be more open with their friends about how they feel. I read him some posts from these forums and he said the problem with sites like these are it lets you think its ok to be the way you are.
I'm really at a loss as to how to get him to realise I'm not just being lazy and would actually prefer to have an exciting life full of energy and experiences.

steve.b
07-04-2011, 01:26 AM
i am at aloss, for good ideas.
some people just do not understand.

untill they can invisage something, it is not in there realm of reason.
i am lucky ? that my wife is also ill, so we both ubderstand the problems.
we still have days where we dot see eye to eye, but generally we can accept each others problems.

if something is not in my realm of experience, it can be hard for me to invisage something.
i understand where your husband is comming from.
he hears the words, not the meaning behind the words.

lovedbyHim
07-04-2011, 02:26 AM
Hello Sonmak, first let me say I am so sorry your husband does not have a clue as to the depth of your "lead blanket fatigue" as Rob calls it. My goodness, I cry over the level of fatigue & fall asleep at the wheel. I used to be a marathon runner. I ran 10 miles a day to stay in shape. I would never choose to be this exhausted! I will pray he "gets it".

I think I would go to a reputable medical site on line and print out something good on the fatigue. I think I would ask him to come to talk with your rheumy about it as well, if your rheumy will back you.

Let me say to you loud and clear THIS IS NOT YOUR FAULT AND YOU CAN'T HELP IT.
Yes walk, swim, yoga are all good to help some, but the person you once was is no longer here and the new you will have to work around this disease.

I have a boyfriend who is glad to see me sleep, as he sees the extreme fatigue overtake me. Bless you dear girl.

debbie-b
07-04-2011, 04:30 AM
Hi Sonmak,
I am very sorry, that your husband does not understand or refuses to understand.
Maybe he is overwhelmed by it. I can understand, that he will never fully understand, what you go through every day. Nobody that is healthy can imagine what we go through on a daily basis.
Give him a little more time. Ask him to go with you, when you see your rheumy the next time, maybe he can explain it to him.
My husband gets mad at me, when I clean the house on my day off, because he want's me to rest.

Debbie

ruziska
07-04-2011, 06:56 AM
I wish I could give you the magical words that will make him understand. I'm in the same boat you are. I've been married for 24 years and have way too much experience with what you are going through. At first, it was extremely difficult to deal with. The person you love, trust, plan to spend the rest of your life with, the one person who you are supposed to be able to count on to be by your side and on your side no matter what... anyhow, yeah, it hurts. Yeah, frustrating doesn't begin to cover it but the important thing that I finally got through my head was to NOT take it personally. NOT easy, but eventually I reached a point where, really, when he makes unpleasant comments, I can truly ignore them. It is HIS problem, not yours. I'm sure you are doing the best you can and until he walks in YOUR shoes, he's never ever going to understand. My husband recently got a wake up call when he dislocated his shoulder after spilling his motorcycle. I feel badly for him BUT, God forgive me for getting a bit of pleasure out of it because now he has had a taste of my life on a daily basis. He's recovering, he'll be fine and the pain will become a distant memory, but what will remain is how it altered his life and gave him a glimpse into mine. Again, remember it is HIS problem not yours. I really don't think he says those things to hurt you, he's frustrated and that's how he's expressing his frustration. No offense to the guys on this forum, but face it, most guys cannot express their feelings very well. Mine certainly can't and when they do, it usually comes out in an inappropriate manner. So when he does complain, don't apologize, don't make excuses, don't explain. Turn a deaf ear, change the topic, walk away and remember it isn't YOUR fault. It really isn't about you (I learned that in therapy and believe me, OMG did it ever change the way I deal with things!) Stop claiming his attitude. Good luck.

rob
07-04-2011, 07:14 AM
Hi Sonmak,

I'm sorry this is happening to you.

The confrontational side of me wants to tell your husband to come over to my house and tell me that I am lazy and not doing enough about my Lupus.

The more rational side of me would tell him that yes, it is indeed OK to be the way we are. What the heck else should we be? Should we live our lives constantly pissed off about having Lupus? Or should we accept the reality that we have an incurable chronic illness, and then get on with living a life with Lupus. I mean, until there is a cure, or one of us goes into remission, there's no other way we can be. I didn't ask to have this crappy disease, none of us did.

I had to finally confront the people in my life who were constantly giving me s**t about being lazy, about not wanting to get better, blah blah blah...
It got ugly. I told people I cared about very much, that if they continued to be a part of the problem, rather than part the solution, that they would no longer be a part of my life. I had to get in the face of someone that means the world to me, and say some very tough, very hard things. Some people became very supportive, and others didn't. The ones who did, are people I absolutely treasure, and love very much. The ones who didn't, are no longer a part of my life. I'm not saying this is how to handle a situation like this. I hope that there are better ways. For me though, this is what I had to do. I hated to have to be this way, but I reached a point where self preservation was my only priority.

I'm OK with the way I am, but that doesn't mean I somehow "like" having Lupus.

I know how hurtful and frustrating a situation like this can be Sonmak. I hope at some point your husband will better understand you, and this disease,
and give you the support you need.

Rob

Peridot20_Gem
07-04-2011, 11:45 AM
Hi Sonmak,

I'm sorry to say this but it sounds like you have an hubby who thinks it's the woman's work and you should be constantley on besides being small minded and thinks your idol...my first hubby was the same and i could'nt take no more but it looks like he just does'nt want to understand.

My husband i'm with now ste as always been a 50/50 bloke on everything that's done and knows how ill i am plus found WHL for me but as things was progressing as i cryed i felt a right pain and i got the same feelings as yourself and found sometimes i had'nt got no where to turn and sometimes i'd get your ok and guess what made him realize was an actual visit to the hospital and when he was'nt getting the answers he wanted about my condition i think the wake up call rose and since then he's took aload on and worries alot now.

It just takes a breaking point with some people but it's finding what will make them realize.

Hugs Terry xxx

tgal
07-04-2011, 12:23 PM
There are so many things that I want to say but it all boils down to one thing... Healthy people can't understand. The question is simply can he get to a point where he can become understanding or accepting but never will they really understand. No one can understand the fatigue until they experience it. No one can understand the brain fog unless they have lived through it.

Having said that, it is really important that the person we are with is accepting and helpful because, if not, the stress will just make you more ill. I know many people are against counseling but this is one of the best ways for couples to overcome the pitfalls of this disease. Although we are the ones that are ill this disease also affects our family as well. We are different people then our spouse met and married. We are different parents then our children knew before. Sometimes entire families need help accepting the new life we have and counseling is one way to do that.

Hope everything works out for you and don't forget, we are here for you if you need us

giggle
07-04-2011, 03:36 PM
Sonmak... : ( Have a big hug from me.

I completely get it. My partner lapses into the exact same thing. Its not constant... but he keeps 'forgetting' I am actually sick. And he does the exact same thing... stomps around the house cleaning loudly. And he wont speak to me for days without even giving me a reason until I yell at him to get his head out of his a*se. Mind you, this is after I have gone to work all day, just as he does. He still expects... woman clean house, woman cook food, woman dress sexy, ugg, do what me say, ugg.
Then he goes ahead and leaves rubbish around the house, dirty dishes in the sink and clothes all over the bathroom and then blames me for not cleaning it all up ^^

Anyway... he has his moments though... of caring and compassion.

And thats where your story worries me : (
You dont explain that this is only occasionally and that he shows moments of compassion. In fact your hubby sounds more like my father, who would never ever understand or even attempt to. People with zero empathy will never change. And the spoon theory will never work on someone without empathy.
My suggestion is to try sitting him down... and put him firmly in your shoes. You need to be stubborn about it and make him do it. Get angry!
The thing I like to tell people to get it through to them is...

"imagine you went on a huge binge drinking adventure and got blind drunk to the point you could barely walk without tripping or walking into something... but for some reason you had no buzz at all. So anything good about being THAT drunk is gone, just all the negatives. The nausea, poor balance, the foggy feeling in your brain. Now, lets say you didn't go to sleep that night at all and you had to work the next day, so you went straight from partying with your non-buzz drunk to working without sleep. You now have a massive hang over on top of your non-buzz drunk feeling, a terrible headache and soreness all over PLUS you are just SO tired from no sleep. But thats not all... last night while you were out partying, someone came along and took a bat to every one of your joints... so on top of your non-buzz drunk, tiredness and worst hangover ever, you have painful stiff joints as well. Now last, but not least... you are fully sunburnt all over and merely walking out into the sun makes you feel sicker than you have ever been. Any part of you that touches the sun, feels like instant burning and you nearly pass out. But you HAVE to go about your day anyway, you HAVE to push through it... and tomorrow... exactly the same thing all over again... and the next... and the next...

Welcome to the AVERAGE day of a lupie. Now... lets talk about a bad day...."

leslieann226
07-04-2011, 04:18 PM
I'm brand new to this forum, but I've lived with chronic pain and fatigue for 11 years now and I am divorced because of this exact issue.

I know this may sound very harsh, but please pay attention to how your spouse's behavior affects YOU and YOUR illness. My diagnosing doctor pointed out my ex husbands behavior and after a lot of therapy, I realized his hurtful comments and attitude was making my health issues WORSE. I realized that when I heard the garage door go up, my heart rate changed, I tensed up and it was terrible.

I'm all for being understanding that most normal people can never understand what crushing fatigue feels like, but it never gives them the right to be hurtful.

My advice would be to let him know that his behavior is hurting you. Tell him honestly how you feel.

I hope I am not overstepping, but I know what you're living with and just how you feel.

Blessings and hugs and strength

leslieann226
07-04-2011, 04:30 PM
...and try to remember that we teach others how to treat us.

If someone treats you badly and you accept it, you are giving that person permission to continue to treat you badly

Peridot20_Gem
07-04-2011, 04:37 PM
...and try to remember that we teach others how to treat us.

If someone treats you badly and you accept it, you are giving that person permission to continue to treat you badlyHi Leslieann,

This is what i was trying to state in my comment...some partners just don't want to open their eyes and my first hubby was so cruel i could'nt live with it but i'm blessed now with my 2nd hubby seeing the specialist with me.

Elo
07-04-2011, 05:42 PM
Grrr! You may not be angry about this but I sure am. He's being such a butt!!!
I wish he could experience what you do for even a week, and THEN he'd see! RAHR.
Anyways, he was definitely right about one thing. Sites like this DO let you think its okay to be the way you are- because it is! It's better than okay, it's amazing that you are still you with all the struggles that you go through, things he couldn't even comprehend. So keep being you, because it's more than okay, it's FABULOUS.

Sometimes there really isn't anything that you can do to make him understand, but I would definitely have him go with you to your doctor or rheumatologist, and have them tell him just how serious it really is. Someone whose opinion he trusts and respects needs to tell him just how it is.

It could be that he's just frustrated and taking it out in bad ways. He kind of seems like a sullen kid watching his sister get to eat ice cream because she got her tonsils out, and he can't see how much pain she's in from that, all he knows is that HE wants HIS icecream, and it's NOT FAIR!

But honestly now, we all know that it's hard for our partners and the people around us to understand. It may be that he's sad or missing the "old you", from when you used to be more active, and possibly, more happy.

Maybe you should make him set up an account and check out the group for loved ones, so that we can try to help him understand how real it is, but also try to get him to feel supported as well. I promise I won't even call him a dummyhead!

The good news is, even if he doesn't understand, it's never your fault, and you will always have everyone here to talk to and support you - people who can understand you and appreciate you for you :)

(Quick note: I hope you're not offended by my saying things like that he's a butt or a dummyhead, it just annoys me that you [or anyone else on here] have to deal with that, i'm sure he's not really a dummyhead, like I said, i just wish he would understand)

sonmak
07-04-2011, 06:27 PM
Lol, s'ok, he's definitely a dummyhead at times! and yes, sometimes I feel like whacking him upside his head! but there are times when he tries, like when he'll spend a sunday morning cleaning the kitchen, then bring me in some brekkie to wake me early afternoon. he just can't get it. He is the oldest of 5 VERY active kids, I'm talking state ballerina, soccer player, army, footballer, very active family. When we met, I was using a stick sometimes because of the RA, but I was also an active single mum working full-time running my own freelance editing business, and was 20k lighter. He definitely misses the old me, shit, I do!
I will take your advice and bring him along to my Rheumy app, I think a new, authoritive voice might help.
I spoke with him some last night, found the letter 'Understanding Chronic Pain' http://healthyasyouage.com/dealing-with-chronic-pain.html for some reason this seemed to work better than the spoon theory (less abstract perhaps ;P ). He said it helped him understand a bit better, and that every day he understands a little more. So there is hope, but meanwhile, I am prompted to go for disability and establish some self-sufficiency. I don't want to throw away ten yrs, but I also don't want to have to explain myself forever.
Thanks again guys for all your comments, I appreciate the time (and spoons) given. I really am so glad I found you guys. :D aww, c'mon.... {[[group hug]]}
Sonja

lovedbyHim
07-04-2011, 08:10 PM
Good replies everyone! Sonmak, you are going in the right direction. Looking for ways to educate him, but also preparing for your future preservation. You never know when he will get too angry about that icecream you are eating. (grin) I have been abused and treated poorly by men most of my life. My mother used to say, "Your biggest mistake is you are too nice and let men crap all over you." It was true. Now I am very independent and have been for almost 6 yrs. My poor boyfriend jump through hoops to win my heart. I am now extremely tentative. Be strong and gosh I hope you soon get pneumonia some meds, you poor girl. (((hugs))

steve.b
07-04-2011, 09:07 PM
I spoke with him some last night, found the letter 'Understanding Chronic Pain' http://healthyasyouage.com/dealing-with-chronic-pain.html for some reason this seemed to work better than the spoon theory (less abstract perhaps ;P ).
Sonja


thank you sonja,
i had not seen this before.
i also found it easier to understand.

Peridot20_Gem
07-05-2011, 07:51 AM
Sometimes there really isn't anything that you can do to make him understand, but I would definitely have him go with you to your doctor or rheumatologist, and have them tell him just how serious it really is. Someone whose opinion he trusts and respects needs to tell him just how it is.

Elo, this is what i stated earlier he needs a good wake up call...to make him understand how seriously ill she is.

magistramarla
07-05-2011, 02:48 PM
Hi Sonja,
I haven't welcomed you to WHL before - I'm glad you found us.
It is a good idea to take your hubby with you to your next appointment. It might open his eyes, especially if you have a supportive rheumy.
My hubby has a few degrees in science, so he does a lot of research about my issues, and worries a lot, but often doesn't let me in on his worries.
He recently mentioned something that we often say here - he said that he wished that my docs could trade places with me for a day.
I love that he is concerned, but one of his concerns bugs me. He worries that I don't get cardiovascular exercise because he worries about my heart.
I know that this is important, but it is really hard for me to get my heart rate up. It irritates me sometimes when he gently reminds me about it!
I hope that your hubby can get to the point mine is at. Perhaps you could ask him to do some research for you? If he finds the info for himself, he might "own" it and believe it.
Hugs,
Marla

kim,l
07-05-2011, 05:51 PM
i am sorry you are going through this i agree with some of the otheres take your husband to rheumi appointment or to a lupus support group if you have one near you i do not have this problem with my husband he is great but i do with other relatives i get comments such as you just need to suck it up or get more exercise or ignore the tiredness or you are just lazy but i decided just to let there opinions just be that opinions and ignore them. hope things get better soon hugs kim l