how do you get your partners to "get" it?

[sunshine008]

hi,

soo many questions i have lately. So, my question is and although they say no question is "stupid" this one may be.

how in the world do you get your partner to "get" your fatigue, pain, how tired you are and can get?

Mine doesn't get the tired part at all. We have a restaraunt, so his hrs are perverse. He gets home at 11 or 12 each night, he's only off 2 days during week than we have my stepkids and my kids so a house full.

Each night he comes home expecting me to be my usual self, I have always pushed my body even when exhausted to wait up for him, spend time with him etc.

Yet lately i'm exhausted. Was feeling really good a week ago, than lately it's like a MACK truck ran me over. I'm also slowly weaning my little one back into school for end of year, and she doesn't sleep well. So last night i went to bed at 2 and was up at 6:30.

I try to tell him nicely how it affects me, etc. yet he says well you have had it all along apparentley so what's diff now that you have the dx as far as that goes?

I said because i am tired, i've always pushed an dit's not healthy I need my rest. He complains your always tired. I said listen it isn't a normal tired and i don't know how to explain it yet i feel depleted, especially now with the 90 degree heat we've been having.

I asked him nicely go look up ms and google it. he went to one neuro appt asked no questions. it's getting frustrating i'm tired, arguing with him about letting me sleep, than i get aggitated. I said flat out how are we giong to survive if you can't be compassionate towards the rest i need to stay healthy now?

his response i love you yet everything is ms now. i said no it's not. I still do everything i did before, even on bad days. i am always on the go.

any ideas? besides running him over with my truck and saying see honey tha'ts how it feels?? ok just kidding there.....

[tommylee]

any ideas? besides running him over with my truck and saying see honey tha'ts how it feels?? ok just kidding there.....

Could you stop expecting him to understand?

After a decade plus of waiting for my wife to "get it" I quit expecting her to understand.

She may vent her frusteration at me some or get pissed that I am not the same person with the same abillities but...she just doesn't understand.
My life is easier ever since I quit expecting her to understand. It is easy to blow off all the complaining when I take into consideration; She has no idea of the struggle.

She will probably never understand so I just have to stop expecting her to and keep in mind we still love eachother and not pay any attention to expectations I cannot meet.

Its a trick that takes a while to master but it seems to help me stay more content.

Sorry I don't know an easier way.

[sunshine008]

i guess that makes sense. I think what scares me the most is that right now i'm still doing all i did previously. i'ts just the staying up late some nights is really hard. i do it each night yet it's kicking my butt.

that he doesnt' grasp that i need at least 7 hours. he never got that though. he functions so well on like only 4 it's astounding. he also goes to bed at 3 each night.

i know he'll never really get it, yet some compassion goes a long way.

[kelm10]

share some information with him

Even as an op on this website I am not sure on the posting of this website. but if it is not below google spoon theory and ms. It does help some people understand. Good luck.

http://mserdee.blogspot.com/2008/05/spoon-theory.html

[cosake]

How Does MS Feel ?

Have hubby try some of these things from the How Does MS Feel site:

http://www.howdoesmsfeel.com/how.html

Even if he doesn't, it is fun to read these !

[sunshine008]

thanks guys........ and i've heard the spoon theory before

[twisterred]

Make it clear that you are sick and make sure you remember that. If you don't change, you aren't doing any favors for either of you or the relationship.

Maybe have him read these posts.

No person can pretend MS symptoms and no one would do this to a good relationship. Maybe mention that.

Have him hear your doctor discuss how his patients don't makeup what they are living.

It's a trial on a relationship, but even more, a chance to grow closer.

True love can walk through any difficult trial. There are plenty of devoted couples who live with this every day.

[sunshine008]

your right, it is a chance to grow closer and we did the first 3 or 4 weeks after my dx. it was what i like to call the "honeymoon" period.

My kids treated me with respect, even my daughter who has bipolar. she often rages and has fits. yet she did have them yet removed herself to do it.

He was attentive, caring etc.

than everyone reverted back to normal. My kid who decided in her infinite wisdom to move out a few mos. ago at age 18 text me at 2 a.m. last night waking me. Had phone on so i could wake up early to phase my youngest back in school again, alarm was set.

My husband couldn't sleep last night, so he got i had to. Yet he sat up till 2 and walked in and out of room. did so quietly yet hangs out in our bathroom in our room, opened door light shined on me and boom i was up.

So, another day bed at 3 a.m. up at 7 a.m. to bring youngest to school. than returned home to clean house, do laundry, bring dogs I hate lately out. while he slept. he's still sleeping and it's 12.

it's his day off, he only has 2 and i try to be understanding that he works 16 hour days 5 days a week so i usually let him sleep till 1 and he doesn't get anything done here really repairs etc.

it's just really frustrating. their all annoying at times and cause me alot of stress. I told my husband I do not expect the red carpet to be rolled out, yet some compassion goesa long way. Maybe stay in another room if you can't sleep than return to room when your ready to?

something's gotta give because i can't go on like this forever. i'm 3 days in with 4 to 5 hours sleep each night and busy days.

[lemstar]

I just posted a whining post on general stuff, about feeling alone. My husband is loving, caring, devoted, and we have been married for 30 years. Yet, he doesn't really get it either. How can anyone get how it feels, if they haven't felt it? And its invisible.
I read the spoon theory thing, and also the list of what its like to have MS. The problem isn't that my husband can't figure out what its like; its more like hes really sick of dealing with it. I guess I don't blame him. I have had some serious health issues in the past two years, and he has had to be quite supportive. And I don't think he has any real support. So intellectually, I know it has taken its toll on him as well, but emotionally, I want to scream, what? Is it hard having your wife have problems??? Poor guy....but what the f about me????
I just feel really alone in all this. I don't want to fall into feeling sorry for myself, but I am tired of pushing my feelings under. Its like a beach ball getting pushed under water, it keeps popping back up. But its an invisible beach ball....

[sunshine008]

think we have the opposite issue.... I want to be alone!!

Seriously though families great, yet they can also be demanding pushy etc. if you let them some say. I am working on setting boundaries to keep me healthy and working on coping skills.

Yet my crew is a very intense one running from husband down the line. My daughter has bp and ocd, my oldest is temporarily insane and left the house yet attacks me verbally once or twice a week. my stepkids have adhd, is very busy yet amazing kid, youngest stepchild has turners syndrome also amazing yet super aggressive due to daily steriod shots I believe that's the cause...... than my husband who doesnt' sleep at night. UGH. love them, yet if they dont back off soon i wont' remain well!

Let this be our venting post..... for all of us. you are SO not alone we are all here in the same cruiseliner with you (notice i didnt' say sinking boat ) i think it comes down to take it one day at a time, that's all you can live at once anyway and enjoy each day, even sleep deprived if you can.

it isnt easy, and your husband sounds very attentive and 30 years is a real achievement, so yes it may be hard on him yet i'm quite sure you have so very much to offer besides MS as well all do. their all lucky to have us.

ok i've ranted enough for one day.............

[Waydwnsouth1]

I just posted the same thing on General Questions. I am at my wits end trying to get my DW to understand. Until last night I thought she understood MS. I thought she had educated herself about it. But now that I look back on it she never read the material I set aside for her from the NMSS. She never watched the DVD's. After talking with her last night I think she is in denial. I know family can be in denial just as patients can. Until a person accepts the dx an education process cannot take place because they will be unwilling to learn. The family will ask us why did these sx all of a sudden appear after the dx. The funny part is they didn't, they have always been present but we just choose not to saying anything because in most cases nobody believes anything is wrong. Such is out plight.

[CarrieMpls]

I notice a few of you posting have been fairly recently diagnosed and with that I would say, be patient and give your partner time. It’s a life-changing event for your partner and family as well.

My boyfriend was diagnosed in April and while things seem to get a little better over time, we’re still both adjusting. It’s been a heck of a rollercoaster for the last 6 months (when his symptoms started).

Being who I am, I have been educating myself all along (starting well before we got the actual diagnosis when we were still just running tests and waiting for results) and he has as well, but I think we’ve watched each other go through some of the stages of grief. He went through denial for almost a month as well, though I am proud to say he still started his treatment and is well into acceptance by now.

Communication is really the key. You need to ask for your needs to be met if they aren’t being met. This is true for any aspect of a relationship, MS related or not. Communication and patience. Easier said than done sometimes, I know.

[lemstar]

Maybe you don't. Maybe you just don't. I posted before--my husband is caring and devoted. And I can relate to the "honeymoon phase" that I think Sunshine alluded to. Everyone was so kind and supportive and understanding. Even my mom, who is very bright seems like she is so relieved that my MS is no big deal. When my MRI hadn't changed as of my last visit to the neuro, and he was pleased, it was like I checked out all fine. Sure I can walk. But I have symptoms every minute that no one knows about. If I say something like, ooooh, that felt strange, I feel like people around me are just rolling their eyes. They have all had enough of my health issues.
Well, so have I! Only I don't get to just ignore it.
I have said it before--I think I am going through a time of feeling very alone. And not really understood.

[sunshine008]

you aren't alone we are all here, maybe in internet world yet we all do really exist lol.

idk the answers clearly since i started this thread. i think in certain situations giving our loved ones time is key. certain, others maybe our dx' is just too much for them. its' all relative. yet one things for sure we aren't alone. i come here when i feel that way and it helps to connect with other who do get it.

because other than exhaustion and fatigue looking we look well those of us who are lucky enough to still be walking and so others dont' get what each day can be like for us and the internal struggles we go thru. maybe they aren't supposed to get it totally, how can they yet i said it once before and ill say it again compassion goes a long way. when you love someone really love them the compassion i believe in time will come.

[jumpinjiminy]

I can't comment on the getting it thing, and others have addressed that here, but I can appreciate your other problems with family and not respecting your need to rest and sleep.

I don't think this is solely an MS thing going on, but might be a lot of stay at home mom syndrome as much as anything else. What he needs to understand isn't so much about your MS, but more so about your needs are as a human being, mother and wife.

Lots of couples go through this thing when they feel they're giving 100% and those efforts aren't appreciated. What worked here was to get an online scheduling program, organize the task lists, grocery lists, MY schedule which fluctuates a lot, what my goals were for the day, etc.

It wasn't as much about having him scheduled for tasks as it was for him to SEE what I do in a day. It wasn't until then that he knew I wasn't just sitting around twiddling my thumbs and eating bon bons every day while the laundry fairy came by and washed the 14 loads of laundry a week. You know? Then there is the cooking fairy, and the shopping fairy, and the toilet cleaning fairy. My poor husband hasn't had to touch a toilet brush in 12 years. He's so deprived.