Am I doing this wrong?
 

DH likes to kid around, tells me when I went full-time in a chair, have problems using just one hand "you're just not trying hard enough". I know I get all prickly inside, but when other people tell me about friends with MS doing well, responding to DMDs or bee stings or JUST have Lyme, whatever, and I don't (Not that I do bee stings), I have a momentary flash of guilt that maybe I'm not trying hard enough. If I were a stronger person, I'd beat this thing. MIL said when I told her I had MS (I know she told SIL she thought I drank) "if anyone could beat this thing, you can". That a compliment right, not a verbal burden? Right??????

I am not in a chair, still running around and I get the "oh; you have MS...are you sure" or I am compared to ones in chairs and "just a miracle you do so well".

Most don't understand the MS thing and how it affects each person in a different way and we try and explain it and still some don't get it. :confused:


When someone says you look so good or you will beat this thing it is a compliment so just smile and say thank you; I appreciate that.

The worst thing is when some well-meaning dummy says "I know someone who died of MS."

Thank you so much; everybody dies of something sooner or later even being smacked in the head with a cane.

Have a nice day.:cool:

its a heavy load. you ARE trying hard enough!

no advice, just hugs and prayers. :hug:

Don't ya just love MIL's and SILs. :rolleyes:

And give DH a smack!!!:p

:hug::hug:

Compliment or burden? It would depend who said it. If my daughter said it to me, I would be moved. I would hear her saying "This might get you physically, but it won't get YOU".

If someone else said it, I might hear it differently.

Doing it wrong? Is there a right way?

I wish there was a book on the "right" things to say to those who are afflicted with illness.
I know so many who think it's helpful to say, "You can beat this...just be strong." Things like that can seem to say to some, "You're not trying hard enough." I am unsure that it's meant that way, but I know I feel guilty for feeling weakened by this disease...wondering if I could do more.
For instance, I like to exercise...but if I overdo it, I pay for it later in the day by melting into a puddle of molasses. But then I don't get in better shape unless I push it...it's a quandary that many people with illness face. How much should you push yourself?

We know inside how much we can push ourselves...we need to do what is best for us, not others. That is the guidepost we all should live by.

:Good-Post: Debbie.:cool:

I'm not sure it matters what chronic disease you are fighting, there are always going to be those with free "medical" or personal advice. I don't have a definitive MS diagnosis yet, just many of the symptoms and a doctor who feels my previous PN diagnosis missed the mark, but I get this with my Crohn's disease all the time. "Try this!" or "My so-and-so cured their Crohn's with such-and-such diet." Arg-g-g-g-gh!

I do all I can to not look sick, but believe me, under this glamourous :rolleyes: (cough . . . cough) exterior is one miserable puppy on my bad days. If course, who goes out on their worst days, during flares, or when the walk to the kitchen is a chore? Most folks never see us when we are really down . . .

I have not met one person with MS who was a whinny butt feeling sorry for themselves kind of person.

We are an aggressive type who search out all the possible treatments and keep our hopes high even though there is little to be hopeful floating around as far as treatments or medical treatments.

At my monthly MS meeting today all I saw were enthusiastic people walking with canes and walkers trying their best to get around without falling. They are some kind of group and full of over 60's and over 80's.

You are in a good group and I am sure that you are doing your best. A pox on those near you that think otherwise.

gmi

The difficult truth is that you cannot control what another person is thinking or saying, you can only control your reaction to it.

Your MS has created paralysis. You know it is part of your particular problem. You have tried so many things (short of bee stings and I would never do that either:)).

I believe people say things because they want you to be better. It is an irrational wish they have for you. You are as good as it gets.

All I do is listen, nod my head and reply that those people with MS that "seem just fine" are so lucky. My MS is so different. That's the way it works.

As for DH, tell him it is not funny. Make jokes at his own expense. If he does it again, tell him again. Not in an angry way, just nice and quiet until it is seared into his brain!!!

It is my "take no prisoners" approach to my marriage!!:D:D:D

The problem is we all do look so @#$%^@#$%^%#@$ good!!!!!!! We are something.

So true.

gmi

I hear ya Kick!!! I've told my DH that when someone asks him how I am doing, to just say fine. I sometimes ''tire'' of trying to explain what's going on w/me. I know people mean well, but most of the time, they just don't understand.

Hang in there, Kick~ I get ya!!!

I just say to people, or have my DH say to people. "I have good days, and bad days." If I feel okay that day I say it. They ask, "How are you?" I say, "Today I feel good", or whatever.

If my DH says something stupid to me, like trying to compare me or my energy level to his, or not being able to go some place he wants to go. I just tell him, well I have MS. You should be thankful you don't. Or I joke back and say,"Want to trade places?".

He gets it, when he forgets it, and so do others, but nicely.

Do I feel guilty, absolutely. I feel some days I am holding DH and family back. But I turn on my brain and say, "If you want to go the store, then go-if you want to visit someone then go visit."

But I would never take any cruel words or gestures from anyone. Not even my family. After all, it could be them, and not me. I would never make fun, or jest at another person's illness.


I didn't ask to get MS, it is not my fault. That is my only mantra to myself. It just happened.

We can, on bad days, turn whatever someone says into a negative sentence. We just have to learn the difference. They might mean something else, ...or maybe not.:hug:

I have to guess most of those people think the same of you that we do here, Kicker. That you ARE strong, that you are a fighter, that you are doing better than most people would, given the challenges you face.

It's tough to put that into words - especially for folks who have not had to tow that line.

I have to guess they are trying to tell you that they know things are tough for you but you're tough and fighting it all the way, as gracefully as you can. That they don't mean to say that you could do better, but rather they wonder if they could do as well.


Surely, if we can see it from a forum, they can too right there in the room with you. You're stronger than you know.

:hug:

What a thoughtful, articulate post!!! :cool: