Wife's RARE MS beating me down

[betterpartofvalor76]

mirey45 and others in the same, similar boat...

I can barely read your stories. In so many ways they hit too close to home. In others, I feel guilty for having felt so sorry for myself this past year. Of course, if I hadn't been feeling so miserable lately I never would have found this place today. Since I'm new here, I suppose I should introduce myself and my situation.

I'll be 34 this year and we'll celebrate our 9th anniversary not long after my birthday. Not long after that, we'll celebrate our daughter's 4th birthday.

My wife was once one of the strongest people I'd ever met. She worked harder (graduated from our private college with a 4.0), played with more abandon and cared more deeply than just about anyone. All of those traits, and then some, combined a few years ago when we decided to start our family. Like many couples, we had some difficulty conceiving. My wife was required to make some lifestyle changes for a time and she did so happily.

In time, our daughter was born. She was so perfect and we were so looking forward to wrapping her in our arms and surrounding her in love from that first moment. Unfortunately, I was the only one who got to do that the first few days. My wife went into congestive heart failure as labor began. Only through her OB's quick response and God's timing and grace was my wife's life spared. She spent the first 3 1/2 days of our daughter's life in ICU.

I'll never forget the moment I got to watch them meet one another face-to-face that Christmas Eve, and witnessed that bond form.

My wife's always been a workaholic, which is why I listed that trait first as I began to describe her. The wonderful thing about her, though, is that she pours that intensity into the effort she gives everything - not just her profession. She was an amazing mother from the start. She poured her everything into loving and caring for our daughter. I'd always been proud to call her my wife, but the joy I got knowing she's the mother of my child was indescribable.

Life eventually got simpler. My wife's health returned and her heart strengthened. She went back to work and juggled motherhood and profession like an old pro. She even managed to get a promotion.

Things took another downturn a January/February 2009, though. After the rapid onset of a series of severe symptoms and lengthy hospital stays, my wife was diagnosed with MS. Over the course of 38 days and, she had three separate stays totaling 23 days in the hospital. She spent another 4 of those 38 in an in-patient rehab facility.

The MS attacked both her body and mind. For a long time she wasn't herself, even once she started to improve. She wasn't able to care for herself, so she had to live an hour and a half away with my MIL while I kept our daughter at home and played single dad.

She's been "better" (and home) since August, but that's not saying a whole lot considering I once spoke to her PCP about needing to be told in no uncertain terms if things ever started to go downhill quickly.

She's lost a lot of her hearing. Her mental faculties have diminished greatly. Just got our daughter potty trained last summer and now my wife's in diapers. She's almost completely incontinent (both urinary and bowels). She's got no stamina. Her coordination's all but gone and she's had to stop driving. She's gone from a career-driven woman to staying at home watching the Game Show Network most of the day. It's like she aged 50 years in the span of a few weeks.

In short, I've gone from living a happy life with the woman of my dreams one minute to scraping by as a single parent to two "children" instead of one.

I don't know if it's the meds or her particular condition, but she stays "up" all the time. It's hard to live with someone so... oblivious. Especially when that person is supposed to be the one who "gets" you more than anyone else in the world. We rescued a puppy from the pound just a couple of months after we were married. She loved that dog as much as I did. We had to put it to sleep in January because of widespread cancer... and my wife couldn't understand why I was so upset.

Sometimes I think the hardest part is that she *has* recovered so much more than we once expected. Some days it seems she's so close to being the woman I fell in love with all those years ago, yet that only shines a brighter light on all the ways she isn't.

People who see her when we go to church or whatever, always say she's doing so well. She can get around on her own. She's always got a smile. Etc. Her family is great and there's no way I could have gone through this without them, but they refuse to acknowledge how much we've really lost of who she once was. I try so hard to share in their optimism that at least we still have what's left, but I hurt all the time.

I've felt so alone in all of this. Sometimes I wish my strength lay more in doing things for myself instead of doing for others. I want so much to run away. This isn't what I signed on for.

But it's not what she signed on for, either. Ditto for our daughter.

All our close friends have long since moved away. I have no time to make new ones. Family's no help emotionally / psychologically speaking. Don't have the time or money to see a therapist.

But I'm losing it. And it's only been a year. Mirey45's been dealing with this since the year I was born. I know a lot of you others have been dealing with it for a long time, too. I just had to stop reading after a while.

Anyway. I just wanted to introduce myself. I hate to know there are others out there experiencing anything close to what I am (if not worse), but knowing it does bring a small bit of comfort.

Peace to you all.

[tommylee]

It's like she aged 50 years in the span of a few weeks..

Yup. That is pretty much what it feels like.
Like your youth and strength have been taken overnight.

Sucks to live with and I would guess it is difficult to be around.

Invasion of the Body Snachers? I wish I could just walk out of this crappy sci-fi movie.

From the sound of your decription of your wife, she sound's like a real Go-Getter? If she has not tried it yet; she may bennefit from some PT.
PT and diet have made a big improvement for me, it may help her?

I have not pooped my pants in over a year!
Now I can walk on my own and look pretty normal.

I don't claim that PT is a cure-all or want to give you any false hope.
But PT and diet have shown slow steady improvement for me, It my help her?

[betterpartofvalor76]

Sucks to live with and I would guess it is difficult to be around.

...

From the sound of your decription of your wife, she sound's like a real Go-Getter?

Difficult doesn't even begin to describe it. I can't imagine what it's like for you. I don't want her condition to be about me. It's not that. It's just... Once, ONCE I'd love to hear her say how much this sucks.

Yeah, she was a real go-getter. Emphasis on the was. MS has taken away almost everything about who she was, including that. She's got no drive. No passion. Heck, sometimes I wish she'd just be even a little concerned. She's just turned into a Pollyanna.

She's been through PT and OT. They helped a lot in getting her to where she is now, but she plateaued in August of last year.

Thanks for your words, though. I'm glad you've been able to find some relief.

[Lattedah]

as someone who used to be a real go getter, is it possible your wife can't discuss any of this because it would be admitting to herself and to you that she is no longer in control of her own body, not the women she used to be , etc ?
Am not trying to say its all a matter of self pride and denial, MS does play some pretty nasty tricks on the thinking process
but there are things I do not say outloud about this awful disease and how it affects me, or my family because saying it outloud makes it so .

[wallflower]

@ valor

wow. i'm SO sorry to hear of your situation, your 'loss.' my dh got ms when we were 2 months pregnant with 2nd child. he's been doing well up until January. i just don't know what's going on. he has so much pain all the time. he never gets a break. his feet have been on fire for 2 1/2 years, and in the past several weeks he's had pain everywhere. he's a different person. i still am grieving.

he tries so hard, but so many times he doesn't 'realize' that he should be concerned about something, or his reasoning is sooo 'off' I'm just in shock about it. he still works FT, and is certain not in the condition your dw if is in, but i still think i can relate on some level. we both lost our soul mate, lost our dream, lost our plans. i can't control my tears when i hear about couples 'just starting out' whether it be new love, marriage, new baby... takes me back to what we planned and looked forward to... and now its like a lost dream. like a death. i guess i keep hoping the MS will go away, or reverse, but i know it won't.

i've pulled away from God over the past 2 years. I feel like he spit on my family. sounds horrible, but i do. really i know he probably weeps for us.

this all probably sounds so dramatic. this is low time.

[betterpartofvalor76]

@wallflower

I know what you mean. It's so easy to just pretend sometimes. If I place all my focus on work, our daughter, cooking, etc., there's really not a whole lot of time to face what's going on. It's probably not the healthiest way of coping, but right now it's better than facing it all. When I slip and face it head on... I can barely manage to escape the shock.

I understand the pulling away from God, too. Honestly, I didn't realize I had until recently. We've kept going to church through all this, still as active as possible. But when talking to a friend recently, I recounted the first time I was able to go to church after my DW first started experiencing her symptoms. She had been in the hospital for just over a week and her best friend flew in from Florida to sit with her for the weekend and give me a break. As our church family had been so supportive, I felt "obligated" to attend the service and express our gratitude and give a report.

It was still so early in the game that we didn't even have a diagnosis yet. That loss was already so obvious, though. My DW, once a consumate professional, couldn't perform elementary level logic problems.

As I sat by myself in our usual back corner, with most of the congregation not fully aware of the situation, it came time for the most heartbreaking hymn possible: "It Is Well With My Soul."

I thought I was going to lose my mind right then and there, and we'd only been dealing with her symptoms for a couple of weeks. It felt like a slap in the face. Some horrible cosmic joke at our expense. The one place you're always supposed to find comfort ripped away part of my soul that day. I will never, EVER forget that experience.

I'm making a call some time this week to get an appointment for counseling. My friend helped me realize just how much I need it. If you can get it, I suggest the same for you.

Our partners may not be physically gone, but that loss and the need to grieve is VERY real.

[mirey45]

I have been a little busy to write, but have been following along daily to all your comments and concerns.

Wildflower I read your post on "playing" What If. I just have to say we all have done it in one form or another. You can't plan for what this "thing" might bring. MS is like snowflakes, no two are alike. Just when you get it all plotted out as to how your going to proceed, it "LOVES" to go somewhere you never expected, and all your planning is "out the window"and it's got the better of you or it thinks it has. Take every day on it's own. Wake up every morning and say to yourself, " What can I do to make sure this does not get the better of me or my family today." After as long as I have been dealing with this it's the only way I have found to survive.

Valor76, you made the comment that I have been dealing with this longer then you have been alive. Look at it this way, after all these years I'm still out here, still by her side and still fighting this "****". All of us took a vow, and swore " In sickness and in health ", because of the deep love we felt for that special person. I tease my wife and get her laughing by reminding her that it says "til Death", so once we get to the afterlife she's on her own. Marriage is a partnership, not always 50-50, and you have to protect the "assets" of that partnership. In this case it's our partner and family. I have two children, and more times then I care to remember had to be both Mother and Father. I look at them now with so much pride as to what they have become as adults, that's what it's all about.

A lot of people with this are fortunate to find and fall in love with someone that has a great Inner strength to carry them and there loved ones through this thing called "life". All of you at the next family gathering look at your in-laws and ask yourself "Could any of them deal with what I go through?" chances are the answer would be NO. I have 5 BIL & SIL and I know none of them could deal with what I do on a daily basis.

Keep strong "family", someday we will get the better of this "monster". Remember "Don't give up, Don't ever give up"

[DianeD]

The story of our lives with MS

MS WORLD gives us so much insight into our lives with this disease.

It's good to hear from the significant others and i think it is very good for them to post here. I'm the one with MS and I can tell you it is so tough with regard to the interaction with my spouse.

I am not as debilitated as the wife of the original poster, but I feel like an albatross that is visiting bad fortune on my family.

I often don't feel like participating in family outings or in things I just know I'll not be able to enjoy and will end up spoiling for others.

The dh and others do encourage me to join in. They mean well...I wish they'd understand that i don't really want to.

However I see that it is disappointing them and though they say they understand, they often do not.

Lets face it....to really 'get it' you have to wear our skin for awhile....so to speak.

The spouses are in a very tough spot; their whole life changes too, almost as if they were ill as well.

I encourage my dh and family to do things and not worry about me, but in dh's case I keep thinking it must be very lonely.

I think the mental pressure this puts on me actually makes me worse! I am stressed.

How terrible it must be though to see your 'go getter, bigger than life' spouse so totally changed.

There surely is a significant mental component to being ill or being the significant other of one who is ill.

I went through more than 10 yrs of managing and caring for my mom and dad in the last years of their life. It totally altered those years for me.

So I've been on both sides of this issue. Some important part of you dies away. I guess that's why it's much harder to be a saint than a sinner. (a little humor here...).

[Paloums410]

I think I know how you feel. Our partners may have different symptoms but I'm just trying to save my marriage. I also took my wedding vows seriously.
My dh doesn't think there is a problem as long as I don't disagree with him or point out that he maybe having a cog prob and could hurt himself. He doesn't believe me. He thinks he knows when,all the time.
The emotional pain is the worst for me. How do you mourn the death of someone's personality? How do you keep your marriage and honor your vows when your other half is someone very different.
Does anyone know if there is,(or maybe start) a message board just for caregivers.
I feel like I'm intruding when I comment on a message board for MSers.
I type too slow for chat rooms.

[Paloums410]

To Sparky

I hope you see this. I don't know how to reply to a reply in a thread.
Thank you for the caregiver info.

[wallflower]

a friend told me recently that God gives us enough grace for today. tomorrow he will give us grace for that day. if we spend our energy on worry, we have more trouble getting thru today bc he gave us grace for one day, as long as we have faith.
i cry so easily anymore, since dh has been so sick, in constant pain, weak, tired. he works with kids adn was always so happy-go-lucky, but he's in so much pain you can see it affecting him, the constant smile is gone, pain has taken away the gleam in his eyes he had for life. i keep waiting for this 'flare up' or whatever it is to be over. but it persists.
dh reminds me that he's the one with the ms, not me, so he doesn't understand what upsets me, because of course he insists he'll 'be fine.' like i'm supposed to just believe that.
some days i feel like i just want to go away, far far away, for a long time, not that i want to abandon my family or kids, but i just need a mental break from ms, where i don't see it, or hear it, or live it.
and dh still works full time and really is at the 'good' end of the ms spectrum. how will i deal when something horrible happens one day.

[mirey45]

a friend told me recently that God gives us enough grace for today. tomorrow he will give us grace for that day. if we spend our energy on worry, we have more trouble getting thru today bc he gave us grace for one day, as long as we have faith.
i cry so easily anymore, since dh has been so sick, in constant pain, weak, tired. he works with kids adn was always so happy-go-lucky, but he's in so much pain you can see it affecting him, the constant smile is gone, pain has taken away the gleam in his eyes he had for life. i keep waiting for this 'flare up' or whatever it is to be over. but it persists.
dh reminds me that he's the one with the ms, not me, so he doesn't understand what upsets me, because of course he insists he'll 'be fine.' like i'm supposed to just believe that.
some days i feel like i just want to go away, far far away, for a long time, not that i want to abandon my family or kids, but i just need a mental break from ms, where i don't see it, or hear it, or live it.
and dh still works full time and really is at the 'good' end of the ms spectrum. how will i deal when something horrible happens one day.

Wallflower, always try to live in the "moment", I found all along through my travel through life with this to never worry about tomorrow. I have been fighting this a long time, probably longer then most of the people out here, I'm still at it, still looking for ways to get my wife through every day. I get tired, hurt, angry, frustrated but I find a way to dig down deep inside and find the strength to keep moving on. Why do I do it, I do it for the person that means more to me then anybody else in the world.

Someone once told me your maker never gives you more then you can handle. There are times I feel like Atlas holding the whole world on my shoulders from this. The chance that someday I might get my DW "back" keeps me going. Until that day comes or the day I meet my maker, I'm going to deal with MS head on, I won't beat it but you can bet I'm going to give it one HE** of a fight, all for her.

Hang in there Wallflower, If I can deal with this , and fight and support my loved one any of you can.

Keep strong

[wallflower]

@ mirey... i really have never thought of it, that you said you do it for your spouse, because you love them more than anything. you're absoluately right. i do think i have pulled away from dh thru this, feeling more like his caregiver and 'partner', like if he's not well, i pick up his share, and not like we're soul mates. he still is my true love. i sooo wish we could go back. i never so deeply understood what that meant until now. to have done things differently when he was well... to have spent more time 'loving' and not fighting over ridiculous little things. as soon as dh got sick, my initial feelings were like 'i am so here for you, WE will get thru this WE WE WE' and its turned into something so different. i'm just worn down.

don't you get tired?
i go, and go, and go some more.

i too feel like a single parent so often. when i feel sorry for myself, i think of people who really ARE single parents. i think i should be grateful i have a loving husband, even tho he is sick.i just can't stop feeling sorry for myself and my kids. i never felt sorry for myself, i always was so determined and confident.... ms has ruined me, is stepping on top of me and i can't get myself up.

[Ikoiko]

Wallflower,

If your husband is able to work full time, why does he need a "caretaker"? I don't work, but if my bf ever refered to himself as my "caretaker," I would be very insulted!

[mirey45]

Wallflower,

If your husband is able to work full time, why does he need a "caretaker"? I don't work, but if my bf ever refered to himself as my "caretaker," I would be very insulted!

I'm sorry Ikoiko, but I have to sound off on this.

The term wallflower used was caregiver, (GOD I hate that term). Caregiver has a VERY broad meaning. It can be someone who provides, very little physical support due to the symptoms of MS being slight, but is there emotionally to support there loved one. To someone who takes care of all there loved ones needs because of what this "monster" can and does due.

I for one only use that term when speaking to peers dealing with this. I would never say it to my DW unless in a "third" party term, as I'm sure anybody else would do.