Have you ever wished..............

[echofuzz]

hi, momof2.

i have a wonderful husband, as well, but he doesn't understand being chronically ill. heck he doesn't understand being ill at all: in his entire life, he's never had the flu and only had half a dozen colds. i'm being literal. he is as healthy as i am sick. as such he has very little understanding or empathy for what i'm experiencing with relation to this disease/disorder/whatever you want to call it.

i feel no guilt when i say that i most definitely wish he could experience this for a day. try working, taking care of a little one, keeping house, and being married when the entire body aches, and the brain is confused, and you're just so tired.... heck, if he could experience it for an hour, i think it'd make a huge difference in how he sees things.

so i'm with you 100%! =)

echo

[LizPetillo]

You could trade bodies with your spouse for a day? Let them walk in your shoes? 

Not with my spouse .. but with some former best friends .. yep. 
It's evil ... but I sure did.  (and sometimes still do)

[Daisy1234]

My husband is really great about my illness, and I'm very fortunate that way so I wouldn't wish this on him. 

However, my first GP who is a woman (and no longer my doctor as I left her after this) actually laughed in my face and I mean that literally when I told her that my dentist said that she thought that I had Sjogrens and badly.  That GP said,"What's the big deal, that's only a little bit of dry mouth and dry eyes and then laughed saying not to bother her with that nonsense).   I would wish this GP not just a day but a few months in my shoes as I struggle each day now to even function and am on LTD and social security disability as I will never be able to work again.  To tell the truth, I don't feel very guilty about wishing that to this most inconsiderate of doctors at all.

[momof2]

Liz, I can hardly believe a Dr would laugh at your pain. She should have her degree taken from her. I'm so sorry this happened to you.

[Jen_in_GA]

My ex husband was a lazy bum, which he hid very well until AFTER we were already married.  He basically let me do all the housework (we both worked full time), then we had our son and he let me do all the housework AND take care of the baby, then I was so sick after my son was born until getting a diagnosis of SJS two years later and he STILL let me do everything (again, while I worked full time).  He could care less that I was sick.  We fought about it and fought about it and finally I gave up and threw him out.  Now he's someone else's problem - though I feel badly for her because now I hear how she has to do everything and she's not well, either.   

Luckily, though, my current husband - whom I've been with for 10 years - is FANTASTIC!!!  He really understands and does more than his 50% of everything so I don't have to do it all.  He encourages me to rest and take it easy and take care of myself.  Breath of fresh air, let me tell you!  So I wouldn't trade with him because he understands.  But I have one friend and at least 5 co-workers that I'd like to trade with - only it would have to be for more than one day for them to really get it.  It takes at least a few months or more to realize that you will never, ever feel good again.

Oh, don't get me started on the ex-husband!!! Were we married to the same guy?!? LOL! My current husband is WONDERFUL! He worries about me. He let's me take naps and doesn't make me feel bad about it. He cooks dinner and helps clean. I never thought I would find someone so wonderful. I am so lucky.

Now my brother!!! I'd trade with him in a second!!! He makes feel like I'm a fraud. Well, that's not right. I know what is wrong with me, but I would love for him to feel it and see it so he understands. I think he is just scared and doesn't want to admit it. He has a hard time dealing with it and doesn't know how to deal with it.

Jen

[momof2]

Jen, I think my husband is a lot like your brother. Sometimes I think he feels like if he doesn't look at it, it will go away. :-(

[Cricket]

momof2

My husband is wonderful, he will do anything that needs to be done.  He tells me all the time to rest.  But yes, once or twice, I did wish he could live in my body for a few hours.  I think it is normal for us to feel like we got the short end of the stick, not sure why some of us have this cross to bear, I guess my husband's cross is ME!!

[dainbramage]

My husband thought I was being lazy. He could not understand why I was sick all the time. Why couldn't I clean house, fix dinner, work full-time, take care of the kids and be there for him. It was a battle zone and I thought I was going crazy.  I thought I was the problem. I fought for our children's schooling and insurance. (one is dyslexic, one a severe bleeder, and we adopted a drug baby) I did not want to fight anymore. Finally getting an appointment with my rheumy was the best answer ever. I came home after I was diagnosed and threw it in his face. HA, I have SjS. I told him people at work are there for me, why can't you be?
My husband is a charge nurse in a hospital. All of a sudden, he has an influx of women with SjS. He ask them if he could speak to them about there symptoms and problems. It must have scared him, because he came home so upset. He said you will be disabled in a few years, you will have all these problems, you will.... I believe he finally gets it. Now other nurses he works with come up to him to ask about me. They want to know if they can call me because they have been diagnosed with SjS. NOW, he says don't you need to stop and rest? Why don't we go out to eat or I will go get something for us.  It is different, but sometimes he still can't understand all of SJS. (he is dyslexic too, so no to reading materials for him, he hates to read)

[momof2]

I've had some very bad days.... and I have to tell you my husband stepped right up to the plate. It's amazing and wonderful all at the same time. Since Thursday I have not had to cook one meal or wash one dish. He actually rubbed my neck and shoulders for me this evening.  Maybe he understands more then I give him credit for.

[mink]

I'm glad to here that Momof2!

My husband is good most of the time. He does almost all the cooking and vacuuming, but he's a bit of a slob sometimes and I end up cleaning after him, but thats okay too since he's the only one working now.

Still.... As cruel as this disease is or can be i would like to trade places with him for just one day (on a flareup day) just so he could fully understand how debilitating this condition can be  . 

[quietdynamics]

I am truly, truly blessed...my Alex is a scientist. He knows what is going on. Sometimes I think he doesn't tell me what he suspects. We are walking this path together. He tells me to rest (My face turns a pale greenish, gray color when I am exhausted). He says "no, don't do that" and I chide him when I have rested "Let me do it while I can". He has diabetes and has had 5 bi-passes...we work together, rest, flirt, talk.
I am blessed, he is blessed..we are blessed.

I will share with you that I worked with severely disabled children, some have never walked, talked, some autistic...a 21 year old getting his high school diploma wearing a diaper under his gown. when I feel like I am at the end I think of them and they are my strength.  At times I do wonder if they are actually the luckier...to have never known "normal independence"?

[Meld256]

momof2,

I'm sorry to hear you've had some tough days lately. But, good to hear your husband has been so helpful. Sounds like he is being more understanding than you may have thought. We all need support. 

quietdynamics,
Thank you for sharing that you worked with disabled children. I know what you mean about feeling down about ourselves and then looking at another's situation.

Take care, all
Melinda

[sis]

Yes I would like to switch w/ my husband for a day.

We have  always had communication issues because we live on 2 different planes of existence!

He is all left brain and I'm all right brained.   He is a rocket scientist to boot, so w/ my worsening brain fog, things get pretty confusing around here!

He doesn't get sick often either. 

He has gotten better at being helpful in the last few years.

When my migraines and fatigue became so debilitating that I had to quit teaching he started taking my health challenges a bit more seriously.

He does the best he can most of the time.

[tired of it]

My wife has seen me almost to the point of crawling,, she cant help, she has seen me break down and cry from pain,, she cant help,, my sons have seen me throw tools after dropping them a hundred times,, they cant help,, my son had to hold me up after teh Steeler game we went to last week,, my legs were giving out,, he cant help, my friends ,, the ones I have left say,, you look good,, they dont know,, my dog needs to go out and do what dogs do,, I have to drag myself out with him,, stand in the cold,, come back in and suffer for hours,, of course he deosnt know,,,, would I want to let anyone else suffer for one day with this,, NO,,, not even a hour,, I have said yes in the past,, but not now,,, there is not a person onearth I would want to suffer like this,, not for one minute,, they couldnt handle it,,

[flutterfly]

OH YUPPERS & THEN SUM!!!

I'm sorry sweets...it's hard ta walk in sum1 elses sh#t^storm!!!

my hubbs is 1 of the oldies but goodies but just this week^end i was on the boards via my dsixl & @ same time was watchin' a movie w/said man & he says such a ^MAN^ thing!!!

mindcha i WASN'T even talkin' ta him @ the time this was said &
everythin' was puppies & rainbows & yet this is what cums outa his word^hole...

is there ever gonna be a time when the subject isn't 'bout ur ailments???

say what??? put that back in ur mouth!!!   

uhhhh yupper u betcha u duche nozzle!!!  i have 2 docs appt.'s this week & have ta schedule a colonoscopy 4 high cancer count & my hips & shoulder's out & have rebel hands & noggin issues & panic & agoraphobia & gastroperisis & type 1 diabetic & arthritis/bursitis & wooky eyes & wooky rashes & NOW...

I NEED A new heart doc & new muskel/balance doc & colon doc & joint/rhemy doc & eye specialist & 
all the sh#t that cums outa all that...

but i will keep ALL OF IT TA MYSELF!!! u betcha ur tushy!!! well...i didn't mean it THAT way the a$$^clown says!!!

um HELLO...how exactly u mean it dear??? i wasn't even talkin' ta ya!!! yeh but u were talkin' ta ur buds 'bout it!!!

oh so i can't talk ta u AND ur mad 'cause i'm sparin' u & talkin' ta sum1 else that DOES understand...& that's what ur mad @?

WOW...hurt feelers keeps repeatin' it over & over & yups i came ta the conclusion u all have...
they just don't GET IT the way they say they do!!!

u guys might 'member in sum of my posts i say...we need ta make a SJG suit like they do 4 insensitive hubbs that don't understand!!!
(like the 1's they make 4 pregnant womens' men!!!)

still in design mode...i think it will have on the inside of it lil' needles ta stab 'em...& rocks in most inconvenient places ta hurt their joints when they go ta bend 'em & ice in their feeters & hands so then they can try & use said didgits w/rebel snow^day hands & feeters & hmmm any other suggestions 4 the torture SJG suit guys?

~*FLUTTERFLY...MEANS IT GUYS...THEY DON'T & WON'T GET IT!!! not even the good 1's!!!*~  much luv ta all!!!