This Is MS Multiple Sclerosis Community: Knowledge & Support

Don't get down, I know it's hard sometimes, and sometimes, most of the time MS is a lonely struggle. It has been for me. Don't lose hope, you never know what's around the corner.

As someone with progressive MS, or as I should more accurately say CCSVI, what's hard for others to understand is that just by looking at me they wonder, What's really wrong with him? If I was missing a leg or arm, then everyone would instantly understand the nature of this disability. They could "see." With neurological disorders, its hidden; the seemingly OK appearance doesn't fit their ideas of "sickness" or "injury."

My EX thought I was extremely lazy, if not sinful, by taking naps. She would get that silent slow burn look on her face that men learn to dread and fear.

Last year I broke up with a good woman; mainly due to a downturn in my symptoms. I just don't have the energy to be in a relationship.

So there are a lot of dimensions to this CCSVI: you, your spouse, your family and each has their own perspective, needs, and wants.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

a question was asked taht wasn't yet answered (at least i didn't see it) and maybe it's just an answer for yourself: why couldn't he do the dishes? regardless of illness, i think any person has a right to leave the dishes, or the laundry or the whole bloody house for an evening or a week if they need to. i'm healthy (my sister has ms) but i have a 1 and 4 year old and work, so am often very tired and don't feel like doing anything most nights. my husband knows to help or keep his mouth shut or get a strip torn off up one side and down the other.

but not everyone has that kind of inner strength, or a husband you don't have to fear in speaking your mind, so my thoughts may not help at all. but i still think the real question is was he like this before your diagnosis, or did this kind of animosity come afterwards? if it was there before, he's just a jerk. if it came after, than i hope he's able to read a pamphlet or two, or talk to another caregiver to gain perspective and help you through the 'for worse' part of your marriage.

Or maybe out right ask him how feels about you today, and then you'll hopefully know where things stand.

To those who say "get rid of him" I want to ask - are you married because your needs are being met by your partner or because you love the person? We love despite of, not because of.

Another question - ok, get rid of him, then what? If one start to deteriorate a bad partner is better than no partner.

Andie,
So sorry this is such a difficult situation for you. It's bad enough having this monster disease and to have the difficulty of a critical and uncaring partner is very stressful. Mark was right in his analogy of guys wanting to "fix" things but soon find out that MS is one of those things that is not easily "fixed". I'm fortunate and blessed to have a supportive and caring husband (a gem of a Jim). I get more angry with myself that I can't do the things I once did and it creates extra work for everybody else. My husband and daughter are both a great help. Do you have friends that care about you and would lend a hand? I,m sure many of us on this site will lift you and your situation in prayer.

I am married, and although I do not say 'get rid of him' (not before trying everything) and even then it's not a phrase I would use, for no one benefits from this kind of thinking because people are not indispensable. BUT, one's life is precious and life with an illness is not going to go well with a 'bad' partner who is sapping your life with their anger and resentment.

I have to disagree strongly with 'a bad partner is better than no partner'! This is not a way to live, with a 'bad' partner for security reasons, when there is a lot of support out there, family, friends, support groups who will give love through care, not rob or withhold love through their immaturity and their inability to cope.

I truly hope Andie that you are able to work t his out.

Zina

I am not able to really post right now for many reasons but this caught my heart, and I want to try to express a few thoughts.

- first, you are already wonderful and compassionate by thinking about all the people affected and caring about how to address the situation instead of just letting it drag on

- I wholeheartedly agree that a bad partner is NOT better than no partner because every day you are teaching your child, in large and small actions, how parents behave together

- I do not believe that anything is ever as simple as roving the "problem" because you could never remove your child's father from her life or your life, ever

- there is no excuse for treating your family worse than you would treat a stranger on the street -- I tell my children, family doesn't mean we are so comfortable with each other we feel free to hurt each other, so if we do, we need to lovingly make up with each other

- I can tell you from being in the situation that I made the rational decision after counselling that my spouse and I were teaching our children bad behavior patterns and we separated. We then attended parenting sessions for years to learn better patterns. But the problem was not from ms-- it was intensified by the stress of the situation. Our family does not interact the same way now. A different family might not have had the same issues.

- I can also tell you from exerience that when a douse has disability ands etc. It does have a severe effect. The divorce rate is doubled for couples with serious chronic illness and disability. You'd like to think everyone pulls together, but what hapens is any potential problems become intensified, you become more and mire "yourselves" and you are faced with the golden oortunity of deciding how to handle it.

Some people stayin a sad sitution for "practical""(reasons" and some make other choices. No judgment on anyone. I've discussed this with others at ms gatherings.

My top priority was the effect on the children and teaching them HEALTHY patterns.

Is it hard being a single, significantly disabled parent? YES. Is it better than The alternative?

For me a resounding yes.

I have found a new world of opportunities and inner peace.

I also found a better relationship with my spouse after we separated.

I wish I had more time to write.

bluesky63, this is a beautiful post. i can feel your strength. thank you for sharing...i have a remarkable relationship but when i got ms i ended one very bad one because i knew he could never support me and give me what i needed. it was not an easy decision to make especially because of the onset of ms, but i saw the ugly future and opted out of it. i was willing to be alone and have faith that life would provide.

my current partner, husband, came into my life when i was in the midst of being diagnosed and has never left my side. i know how blessed i am
And Andie if you are reading this thread still, I hope we are all encouraging you in a positive way and that you will find the strength to do what you feel is best for you and your child and husband.

zina

The other thing I wanted to say is that grief counseling may be in order for both people. Andmaybe for kids too, if they're able. Unexpressed grief can affect a huge part of life.

My husband thought he was signing up for a vibrant, funny, athletic, intense, incredibly energetic person who never quit. A major part of our relationship was based on a person and on activities ghat just honestly don't exist anymore.

I go through this too. Our oldest daughter gies through this. She considers herself a child of the wilderness. Right after she wasborn we took a hiking trip through the porcupine mountains. We have all these funny photos of this newborn under mosquito netting to keep off the black flies.

I played basketball unroll the say before I gave birth to my second child. We went on a three-month wilderness tri right after I was diagnosed; I kept trying to find out if I have the record for injecting avonex at the highest altitude on the Rockies . we took toddlers whitewater rafting, etc.

But it changed so fast, I changed so fast, and within two years I was not recognizable as the same person -superficially- at least. And he left.

I can see that there would be real grief at losing the person you thought you would spend your life with, when it turns out to be an exhausted shadow who can't even walk, let alone hike the Appalachian tral, etc.

There is the same grief for me, my children, our parents, extended family, etc. Counseling would help address it.

Very complex. I don't know if I am helping, I am just trying to think of some things that may be going on for you to consider.

I wish you all the very best. Lease do nit forget your child's need to have a place to express, even if all you do is hand over a journal and say, here, sometimes I feel better if itake all the stuff inside me and put it all here instead.

Take care of yourself -- good luck!

Forgive me for yet another post -- I wanted to just edit but I am having some issues right now and I can't figure this out!

I did not want any if that last stuff to sound self-pitying because I don't feel that way. My point us that usually a couple has a lifetime to grow into physical issues, to age, and to accept physical limitations and mature into them. When physical lmitarions are sudden and young, as they are with MS/CCSVI, many people gave nit yet found that maturity.

So it is not quite that surprising to see a spectrum where a percentage of people would stay together no matter what, some need counseling, and some would not have worked anyway and this was the tipping point.

I would love to see mire support given to children in families with illness and siability, specifically in the area of encouraging expression through art. Many children thrive through having this area to get out their feelings. This has kept my children sane. . At least I hope so.

Yes, and the divorce or separation (IF I were considering it, which I am not) would be a HUGE blow to my children.

Any time we have a disagreement (and those happen in any family, MS or not), my daughter asks me later - "You will not divorce Daddy, right? Right? Right? Please do not divorce Daddy!"

"Healthy patterns" is a very broad term...