My oh My

[Tweeker]

Hi - been forever since I've posted. Having lotsa problems with "good" side of body. Doc said I've reached secondary progressive level. It sucks for sure. Wife harping that we never DO anything. Hell, using the walker to get from bed to living room IS doing something for me. Pretty tough going at home between us now. Married 38 years but thinking that we've come to the end. Too bad. For me, she was the reason I tried to continue to go on. Now what?

Tweeker

[Parsi]

I don't know what to say, Tweeker. There is nothing to say.
For some of us getting from bed to living room is all that we can do. Others really push the limit.
Is there a balcony or porch or patio off your living space that you can sit together with your wife and just talk or enjoy nature? Perhaps board games. Probably not what your wife has in mind, but {shrug}.

Whatever the future holds for you, I wish you the best. You know you can always talk to us.

[Jeanie Z]

:) Tweeker I have been in that situation. My husband I married in 1959 and after my MS got worse we divorced after 32 years. Then I met David and he knew I had MS and we were together until he died in 2013.

I am much more disabled now and was afraid I would not be able to manage on my own. My two sons help me a lot but I have been able to stay in my home. Most days I do not even get out of my pajamas, but I am ok with it. I cook microwave dinners, eat fruit and sleep a lot.

The only goings I do are to the grocery, drug store, doctor, hair and nails done. I use a scooter and have a 15 year old ramp van. I would do more if I had more energy.

I hope your situation improves. I will add you to my prayer list. Jeanie :)

[agate]

We who have MS are not some people's idea of fun. And I've heard of quite a few family members who bow out of the picture when it looks as if not only is this not going to be any fun--they might even be asked for help.

It's too bad if your wife is one of those who's not up to this challenge.

However, if your marriage has lasted 38 years, surely it hasn't all been easy street for you during that time. You and she must have weathered a few storms in the past. Maybe you can talk her into sticking it out--without pleading but just by laying out what the possibilities could be.

It might help if you think about the things you CAN do and emphasize those. Then you and she can build on that, maybe?

[renee]

Not knowing the two of you, I can't add much.

One exception: I found that if my other 60% was going to be noncommittal to couple outings
I made my own plans and invited him.
Does your wife enjoy adventures on her own or w/friends?

After an outing even without Man O'House, I came home happy and loved sharing the experience.

Would ditching the walker for a wheelchair for outings make any sense?
Good Luck.
It is not easy



.

[SuzE-Q]

Tweeker, just curious how your doc determined you'd reached SPMS "for sure"?

I'm wondering the same thing for myself.

If you and your wife aren't happy, it is better to separate and find your own quality of life, which would be better either alone or with someone who WANTS to be with you.

That being said, I'd exhaust all means of resolution and reconciliation first, find out exactly what one another's needs are, and see if it isn't possible to either meet them in a different way that works around your limits, or compromise. Relationships are always about give and take, as people age, there are always limits that arise, it's about finding new or different ways to build a strong relationship! I'm sorry you're having a difficult time!

[Lazarus]

I have been thinking a lot about marriages and illnesses. When a progressive MS friend died last year, I thought a lot about her husband. He had been a wonderful MS support husband. They had traveled the world, had children to visit and grandchildren whom they loved.

So, I realized that when my friend died, her husband suddenly was free of MS. Our spouses who do not have MS live a life confined by MS. When their partners die or when there is a divorce, they find themselves suddenly free. It must be a shock as well as a relief.

Even when the spouse is a great and loving partner, MS steals their lives too. We sometimes are so focused on ourselves that we do not see what it does to our partners.

[renee]

The point I wanted to make but probably didn't was that unless you and your wife
know how to live independently while being together, one or the other of you will be carrying too much weight.

I watched my partner of over twenty years nosedive while living with me, a wheelchair-bound MSer.
I took care of myself alone perfectly well but he depended on everything being the same.
Fat chance.
So, before he made me feel desperately worthless by proximity, I left.
He couldn't believe it even after all my warnings to get his head together.

I'd prefer to share my life with someone but not at the cost of feeling badly
about myself. 'Love me, accept the pink elephant in the living room.'
That is my pride and my inner survivalist speaking.

We need to decide from whom or where our happiness will come from and
then foster it.
It may involve a shakedown but nothing ventured will gain nothing.

Love yourself.

[Virginia]

Some excellent replies here Tweaker. There is not much I can add because it has already been said. I do hope that you and your wife can find a way to save your marriage, however if this just happens not to be the case I hope that you can come through it without the difficulty that a lot of people experience at the end of a relationship.

Should the worse happen, after the grieving and when you find your on way to live on your own, you might just find that you have much less stress in your life.

[Sunshine]

Marriage counseling