Same here!!

We went to a family get to-gether for Christmas and naturally it was in the evening after a busy day (for me not for normal people). We were there for 5 Friging hours. I kept telling my wife "I need to go" but she kept sitting there. Finally I got up and started walking to the door somewhat embarrassed saying I really need to go.

Took me all the next day to get over it.

I'm sorry you are both having such a hard time with your spouses not understanding. I dont know what to suggest other than to talk to a counsellor or ms society & at least get some ideas on how to cope.

Sometimes a reminder of the "spoon theory" might be helpful. I try to catch myself when I feel guilty about my condition because it's not a helpful emotion. I try to remember that my being happy to see him is so much better for his endorphins than my feeling sad for my condition.

Our days can be challenging but expecting the best has helped me more than looking at the down side of things.

I hope things go well for your relationships this year. :) Happy New Year.

The Spoon Therapy is exactly what led my husband to understand. That and a video made by an actress who went to the mall and had people wear all sorts of stuff to mimic how we might feel. He then got it. Many of our friends still didn't, but now that things have progressed quite a bit, it is obvious how hard things are. Best of luck!

Along these same lines I have friends who know my condition constantly say "Well you sure look good". I know they mean it as a compliment but I can't say I feel great or similar. I haven't come up with a suitable response yet. Generally, I just say thank you and move on. I do hate it when people ask to get together for dinner or lunch and I know my day is already full.

EasyM,
I've said "I might look good on the outside but inside I am fighting a war and am losing." That kind of makes them get it.

I have found in the 6+ years that I have had this Dx people in general have no idea how to speak about my disease. They either; 1. Tell me a horror story of someone they know who has had MS and died or is suffering horribly or 2. Tell me how great I look.
Either way it is not comforting at all. I usually smile politely and quickly change the subject. No one really wants to listen about how it feels to walk on pins and needles incessantly. Or to endure a conversation about how I have no energy to walk up 2 flight stairs.

I take my hubby to my MD appointments. He knows what the MD says and he sees they treat it seriously. I took him to some care giver support groups. He heard from other spouses that their wives forget things, have no energy and stress completely drains the gas tank.

I had the opposite problem after that. I would pick up a duster and he was on me. "let me do that" or a dish "let me do that" or the laundry "let me do that." ummm..ok, I appreciate the help, but I am not helpless. I am not made of glass and I NEED to do things to take care of me because its good for my mental health. BACK UP! Yes I will have times that I am sick, dont feel well, dont want to, will be unmotivated and forgetful, but we can work around those days.

So many think this is a disease of will power. We look good, so we must feel good, no? They cant see the tired to the bone. They cant see confusion when you are tired. They cant see that just doing the dishes is enough to make you feel like you climbed a mountain. They think we are just out of shape and if we got up and started doing things, we would feel better, no?

Can you talk to him? give him the MS for dummies book? Let your MD explain to him that you cant help it, and HE will have to fill in some times? Education goes far if done with love. Ridicule and nagging the sick spouse only serve to add to the stress which drains the tank faster.

Saying a prayer for you.

I can understand your situation. I have been married for six years now and throughout the marriage I have always been honest with my spouse about my illness but she has always had a hard time adjusting. We have no kids and she has wanted one the last few years and I want kids too but have resisted bec I felt/feel that she will not stick around for the duration of our marriage. I am temped to let her go and I am pretty independent but I know that I would be lonely without her and am afraid that I will never meet anyone who will understand my situation and support me. All that I will tell you my friend is this; take each day one day at a time. Each morning, thank G-d for the chance to rise and experience a new day and believe that "today" will be a better day than yesterday was. We must stay strong and hang in there.

I know exactly what you are saying!!! I feel your pain, and heartache all the way here!!!

I wish I had some good advice or any for that matter. Well.....I do but then you might end up divorced. hehe

Just know you are not alone, there are others here that knowwhat you are talking about. They have either been thru what you are going thrum, going thru it now, or been there done that, got the shirt, wore it out and not eating the chips.

I do wish you the best. But remind him this "YOU ARE ALREADY FIGHTING MS, THATS ENOUGH!! YOU DONT WANT TO FIGHT WITH HIM AS WELL"

christysms

Oh yeah! Sounds SO familiar. I now try to NOT say "I don't feel well" for fear that he will again give me the lecture of how I can choose to be better (yeah, right....) and compare his aches and pains with mine. He has since been diagnosed with diabetes so has been a bit more understanding (imagine that). You don't say how long you've been married nnnic72 but maybe in time, he'll "get it" a little more every day?? I hope so for your sake, because I can relate to what you're going through. It's hard not having that support.

Our local chapter had an overnight couples retreat in 2011. Met some other people in the same boat as us, had a Friday night mixer, paid for rooms, and then Saturday was speakers, slideshows, food, a bunch of interaction and then seperate bit*h sessions for cases and caregivers. It was completely Ausome and if any chapter members are lurking I would love to help you put together another weekend.

The program was great and it should be most manditory.

I would LOVE to an overnight couples retreat with my local chapter, Audog. How did you find out about this??

I've found since my Dx that people have a hard understanding the invisible symptoms. Pain, confusion, fatigue are things that a person can't see. My boyfriend has gotten better, but it took a lot of talking. Last night I had taken my Avonex injection and the side effects started sooner than I expected and had to stop cooking dinner and lay down suddenly. He just continued where I had left off without a second thought then brought me dinner in bed. We still have days that I feel he doesn't understand but it's a process. All relationships are hard regardless of MS.

In response to the 'you look so good' comments, there are two noteworthy replies:

1. Looks can be deceiving.

2. I wish I felt as good as I looked.