You could trade bodies with your spouse for a day? Let them walk in your shoes? Just one full day.... maybe a day when you need to do 10 different things and then have to make dinner and clean up at the end of the day.
Bummer..... I sound bitter don't I?
Sending you tons of
( ( ( H U G S ) ) )
Momof2, and hope that tomorrow is a better day.
Take care of yourself -
Patze
Actually I had a good day today. But by the end of the day I am so exhausted. And I hurt so much. :(
But thank you for the HUG. It helps to know someone understands.
Perfectly normal, but mine works nights, so he is just as tired! LOL
I bet he is. Bless his heart.
I think many of us are blessed with supporting/helpful spouses. Makes me feel bad for those without this. Lucy
I shouldn't talk bad about him. He really is a good guy.... Hard Hard worker. I think he just doesn't understand. He is one of those guys that will work until the day he dies. He has a hard time sitting still. Always doing something and doesn't understand the need to rest.
It is just going to take him time to come to terms with this. I think he will in time. At least I hope he does.
Hi momof2,
First I want to welcome you to the forum! :) I apologize I didn't see your first post.
And, yes, I have secretly wished my husband could feel what I go through every day just once. So he really can understand. I am blessed because he really tries, so that's all I can expect or hope for.
Hopefully, as you say, your spouse will come to understand your need to rest. With mine, it has taken him about a year that we've gone through this to come to some acceptance about my limitations. We talk about it all fairly often. I try to understand that since my life has changed so drastically, this has affected his life so much, too. It's not easy sometimes, but we are committed to working together on it.
Please feel free to ask anything here, vent if you need to and remember that we understand and care! Looking forward to hearing more from you.
Take care,
Melinda
Putting a male perspective into this as well.
When I fell ill in March and was unable to work really put a strain on the household as I was the main wage earner. But my wonderful wife has coped and managed so well. She really is a kingpin and pulls the house together now.
I have been through 3 major heart operations since July and she has been by myside feeling my pain through everyone. Even with all my symptoms of Primary Sjogrens she hasn't complained once.
This has rubbed off on the children and thay have also been very supportive.
I'm so glad I have a great family. So to answer your question, no I wouldn't swap places, thats just too cruel. But I do know what you mean ;D
I have wished to switch places with anyone who doesn't have an illness of some sort.
I just want to see what it feels like to feel 'normal.' Sometimes, I wonder if I am babying myself too much and that everybody has aches and pains, but they just have more determination than I do. So if I could switch with someone, maybe I would say, "Wow, I really do feel awful -- I can't believe I get done what I get done!"
Liz D.
momof2,
I totally get where you are coming from. I have a husband that can keep going also and doesn't understand why I can't. He knows that I have my illnesses but doesn't understand them. After all these years, I believe he is still in denial and I believe in my heart is too scared to accept them so in his mind, I am perfectly normal because I don't look sick.
I have fought inside with this and it puts a big drain on me emotionally because I'm torn inside. I'm 35 years old which is not someone who (by his definition) who should be laying in bed all day because I'm sure in his mind its viewed as being lazy (especially at my age) so I fight through everything. I'm very tired but I don't show it plus I work full time as well.
So yes, I do sometimes - guiltly - wish he could feel what I feel just for maybe 1/2 a day to know but then I'm also afraid to show my weakness, which ironically is my weakness also.
What an interesting topic!
Of course we can't ever really know what life is like for another person, and vice versa.
it has been so long I can't remember life without generalized and specific pain.
if I could take serious pain meds, perhaps I would have some relief.
I do know that pain that is gone, is pain that isn't well remembered. I'm grateful it's gone for an hour or a day or two, and then it slips away.
In June I had an intestinal blockage of unknown origin. Clearly a temporary sort of spasm in my small intestines.
The pain was excruciating, and I finally insisted on going into an emergency room and wound up hospitalized for three days.
Once the abdominal pain was relieved to some extent, I had another horrible pain from the naso gastro tube, which was pressing on my deviated septum and gave me the most horrible pain, like roaring tooth ache.
And of course, no pain meds.
But now that I think of it, I'm not really FEELING the pain, just remembering it.
So if I can't really identify with my own pain past, I'm not sure anyone can understand someone else's pain.
And the interesting thing is that doctors tell me that I have a HIGH tolerance for my own pain.
So it isn't that I'm a sissy or over reacting to normal body functions, as is often said of people with chronic pain.
Nope, it's real. It's chronic. It's my life.
I'm just lucky I don't have to work every day, like so may of you do. And large meals for my three grandchildren and their parents only happen occasionally and not on a regular basis.
I wish us all a less painful 2011, and all the TLC from our loved ones that we need on a daily basis.
Kisses
Elaine
Liz D. I so feel the same way! Sometimes I get so down on myself, thinking that I should just be stronger & try harder. It would be very interesting to see how different "normal" is.
I don't want to wish these problems on anyone, but sometimes I do think that's the only way they'd truly understand.
Momof2, I am extremely fortunate & thankful to have a husband who really does understand. We've been married for 27 years. He knows how I used to be, he knows all the ways I'm hurting & struggling, he knows how I wish I could be. This has taken some time, though. We've had to work at it together. There's so much I haven't even understood myself, so it's sure hard for him to understand no matter how hard he tries. I see a psychotherapist, & sometimes my husband goes with me. Not because we have marital problems, but to help us figure out this difficult road together. I make it more difficult for him sometimes because I tend to keep things in & I can't expect him to read my mind! He's very, very good to me & for me. My 2 children, my mother, & one of my brothers understand pretty well too. Oh, how thankful I am for my sweet family.
Others however, do not get it. I think I'm seen as weak, sickly, depressed, you name it. Even some who've known me for many years, before things got bad.
My favorite (not) comment was from a co-worker who has watched me in 7 years go from a hard working, always there, highly respected & requested teacher to a still hard working, but out all the time, tired all the time when I'm there, not so requested teacher. Her comment was that "her personality is just different from mine, as she's just a very driven person & doesn't have time to get sick." Okie dokie, that explains it. ::)
I think I'll stick with my family. They get it, thank God, they get it! :)
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.
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
Quote from: momof2 on January 03, 2011, 07:47:44 PM
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)
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.
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.
Quote from: jordozmom on January 04, 2011, 08:38:02 AM
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
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. :-(
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!!
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)
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.
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 :o.
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"?
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
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.
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,,
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!!! :o
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!!!