Pretending to the outside world to be "fine."

[Augusta Girl]

I get this . . .

Lol, MS or not this sounds like male vs female.

And I agree with what the other poster said. I read somewhere that MS is like the third wheel in the relationship, like it's a mistress, getting in between couples all the time.

When he is overdoing it, I'm worrying, and so not enjoying myself with him and our friends.

And yes, when he is then exhausted the next day, not wanting to do anything and not his usual sweet fun self with me, I feel like he traded that fun time with me for having a fun time with his friends.

I get a double dose of no fun time with him and the worry, but he at least gets that fun time with his friends.

If he knowingly is overdoing it, it feels like he is making that choice, weighing the options and choosing them over me? Maybe that's what I'm trying to figure out how to express and make him understand.

I'm not sure if this is fair or right for me to think, but sometimes you can't help how you feel.

[Marypc31]

Let me try to explain it.
I know there's a probability that someday I'll be lying in a bed and won't be able to do much more than that. The last thing I want is to be lying there thinking about all the things I could have done when I was able.
I'm not talking about climbing Everest or running a triathelon, sometimes I just want to hang out with my buds without being the wet blanket.

My dh does that same thing and he has PPMS. I think it's important to stay active and not worry to much because there just might be a day when they cant.

[Bob698]

I get this . . .

I'm not sure about that.
It sounds like you're fishing for someone to comment about the famous Buxley Clinic study of 1995 that proved conclusivly that males with MS fare much better when they exhibit slavish devotion to their girlfriends and..


Well, I'm making that up.
Your issue seems to revolve around fatigue. I deal with fatigue and it doesn't really matter what I did the day before. I can put in a day of yardwork and feel fine the next day or I can organize a book shelf and feel wrecked the next day. Its pretty variable in my case although the fatigue is always there. It just kinda comes with the territory.

[Augusta Girl]

Funny. . . .



[QUOTE=Bob698;1305504]I'm not sure about that.
It sounds like you're fishing for someone to comment about the famous Buxley Clinic study of 1995 that proved conclusivly that males with MS fare much better when they exhibit slavish devotion to their girlfriends and..

Perhaps it's just trying to find logic and a pattern in a place there is none. Yep, somedays he's totally fine when he has had a really tough day the day before. Other times he's wrecked.

I've always been a "planner." You know, plan for "what ifs" and worst case scenarios. MS defies planning so many times . . .

[katvar]

I just recently realized how much my husband and children really worry about me when I try to "suck it up". It is hard to understand how upsetting it can be for them to watch me push ahead and then see me struggle. I am starting to get it.

Why do I do it?
-I don't want people to feel sorry for me
-I would like for everyone to enjoy the moment rather than focus on my MS
- If I am laying down or sitting and visiting with friends I can be equally miserable - why not make the most of my time on earth
-Every day when I wake up it is a new adventure - what can I manage to do today - what will I do for the last time today
-I am not enough of a Drama Queen to live as a person struggling with MS - so I leave it up to MS to struggle with my stubbornness.

I have seen the worry and fear in my family's eyes when I push myself. I am starting to understand that it is also difficult for them to live with my MS. I plan to share this thread with on e of my daughters that worries a lot about me. It may help her also to know that she is not alone.

[Augusta Girl]

And my otehr question . . .

"Your issue seems to revolve around fatigue. I deal with fatigue and it doesn't really matter what I did the day before. I can put in a day of yardwork and feel fine the next day or I can organize a book shelf and feel wrecked the next day. Its pretty variable in my case although the fatigue is always there. It just kinda comes with the territory."

Question: When my BF does overdo it, can it hurt him? I mean besides being exhausted and hurting the next day, can it cause any permanent problems like a relapse or increase probabilities of lesions, etc.? Perhaps because I don't know enough yet, these things worry me because I'm not quite sure EXACTLY what he is doing to himself. So in my head I go with the worst case scenario . . .

[heliotrope]

The short answer is probably not. As far as relapses go - I've had flares appear after I've spent weeks doing desk work... so I may have been stressed, but shouldn't have been tired or had physical stress. What causes lesions is an open question. I don't think science has come anywhere near an answer at this point. MS is unpredictable. For me, I'd rather try to live my life than spend all day worrying about what each action might possibly cause.

[Scooter24]

I've been following this topic since it started, I am the one pushing myself and "overdoing it". Put yourself in their place, if the shoe was on the other foot would you want people to tell you to not do things, take it easy, watch out , etc etc all the time ? I don't, we have more problems with my wife trying to do things that I am perfectly capable of doing myself, I have MS I'm not crippled (yet). Let them have fun while they can.

I played golf today in 92 deg with about 80% humidity, If I feel bad later too bad for me but I had a blast playing. I'm not asking anybody to feel bad for me.

Not to be mean but I see more of a reverse sympathy that you are not getting the attention do to thier activities and their MS.

If they feel comfortabe doing things and it is not endangering their life so be it, I can understand not getting on the roof or on high ladders but let them live their lives to the fullest extent they can while they can, we never know what tomorrow brings.

Sorry if I hurt anybodys' feelings but I tell it like I see it.

[Bob698]

Fatigue from MS makes it basically impossible to over-do anything, based on our old definitions of over doing it.
In my case, when fatigue kicks in its far from subtle and I feel like I'm going to pass out if I don't lie down. I've never over done it or kept pushing on while I was feeling fatigue, it just doesn't work like that.

[Augusta Girl]

So, where is the line?

I've been following this topic since it started, I am the one pushing myself and "overdoing it". Put yourself in their place, if the shoe was on the other foot would you want people to tell you to not do things, take it easy, watch out , etc etc all the time ? I don't, we have more problems with my wife trying to do things that I am perfectly capable of doing myself, I have MS I'm not crippled (yet). Let them have fun while they can.

Not to be mean but I see more of a reverse sympathy that you are not getting the attention due to their activities and their MS.

So I see a lot of discussions on this board where people with MS are complaining that their spouses or SO just doesn't get it, how the SO thinks they are faking or don't understand how tired they feel, how much they hurt, etc.

I understand when he is tired, and I try to help him however I can when he's hurting. Every day his life is affected by his illness. I try to be as supportive as I can.

But when YOU have MS, so does your partner. Every day his MS affects me too, but not in the same ways. It affects our relationship, how we interact together, whether we can do anything together that day, enjoy our time together, whether plans can happen, etc.

You tell me to just let him live his life, overdo it when he wants--live his life to the fullest. Someday he won't be able to and regret not doing those things.

Someday when he can't do those things anymore and his friends are all gone because he's "no fun," I'll be the one still there for him. I will also be sad for the lost time and fun, and wish I could have had more of it with him.

So where is the line between my "getting it" and understanding how his illness is affecting his life and happiness, and my wanting him to sometimes slow down and not knowingly bring on another exhausted episode?

Can we have it both ways? Is there a fair and thoughtful compromise for both of us? Because I guess that's my point. We both deal with this every day, and I am also looking to have as much time with him as I can before I've lost the chance.

[Augusta Girl]

Amkes sense . . .

Fatigue from MS makes it basically impossible to over-do anything, based on our old definitions of over doing it.
In my case, when fatigue kicks in its far from subtle and I feel like I'm going to pass out if I don't lie down. I've never over done it or kept pushing on while I was feeling fatigue, it just doesn't work like that.

With my BF, when I say "overdoing it" I mean doing things that he knows will likely cause him to become exhausted.

Working hard outside on a really hot, sunny day is something that many times will cause the fatigue episodes to kick in. He knows if he doesn't work as long or as hard or takes breaks, it either won't happen or will be less severe.

No, it doesn't happen every time, but it makes it more likely that it will happen.

[Scooter24]

Bob- once again I have to disagree with you ( gee starting to sound like me and my ex) I do push my myself past "the point" quite frequently, where to a point I am just about able to walk and only with something to hold on to or a cane and frequently get to the point of feeling like I may passout.

That's just me, prior to MS I have always been told I push myself too hard. Even in the old days as a fire fighter I would come out of a fire, swap air tank and be first in line to go back in. I do the same no matter what type of activity I do, the college counslers always told me I was taking too many classes but I did a 4 yr degree in 3 yrs. would have been quicker but had to wait for 2 classes to be available.

Augusta girl- We have been together for over 30 yrs now, we have been thru the better and the worse as they say, we have both had cancer over the last 12 years, DW has heart problems and will need a min of valve replacements in the next few years, we have both worked very stressful jobs, and ones that have taken us "away from the good times " on many occasions.

We have completely different interests, she loves doing her crafty work & gardening and I my golf and model railroading and it works out well for us as we both enjoy our alone time, we have date night on sat, we usually go out for dinner and then find something else to do afterwards for a few hours. We are not ones to shopping together and I can't remember the last time we did. The only thing the MS effects is if we go out for dinner I may walk a little slower to the table. But if I am feeling poorly I just push thru it.

[Scooter24]

Bob scratch the first part of my last post about disagreeing with you again, got you and someone else confussed.

[Paloums410]

My hubbie is going to push himself whenever he can. He has made a conscious effort to notice what happens when he pushes himself too much and also, what the effect of pushing himself does to me. We have talked about this many,many times(it took years because of his cog probs) and he is wonderful enough to try and understand my views and I try to understand his.
MS affects the mser and whoever is living with and helping them.It is a emotionally draining disease,to say the least.
There is a caregiver chat room here on Wednesday's @ 8pm e.t. Also,check out the chat room for MS(they don't mind that you do not have MS,although I did ask if they mind). I have gotten more info and help chatting with mser's than from any doctors.