This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,

I'm still a serious newbie, and haven't learned the language, or the background knowledge I'm sure most of you possess.

But onto my concern: My husband has just been diagnosed with optic neuritis. His condition is deteriorating rapidly. He has a plethora of tests this coming week, and the doctors have given him an initial diagnosis of MS.

He is devastated. Having said all of that, I need to understand his mood. First, he was very depressed, and then he was angry. Then he was making jokes and had his sister over to dinner this evening. When he came to bed, he nearly bit my head off. I understand that he needs space, and I understand his need to come to terms with the changes he's undergoing...but honestly...I don't understand the extreme mood swings. I was completely caught off guard. I thought he was making some adjustments, and the last thing he said to me was, "You have no idea what I'm going through." Okay, I don't. But...does that negate what I'm dealing with? I have a husband who, in 48 hours discovered that he's probably going to have to go out on disability (he's a police lieutenant), we'll be financially strapped on disability, not to mention the fact that his body is betraying him (to his way of thinking), and he will have to make some major adjustments in his life.

Having said all of that, I've tried to be supportive, non-demanding, available, proactive. And yet...he seems positively furious with me. I don't understand. This is happening to me too! Granted, I don't expect him to comfort me, or even realize what this is doing to me...but why am I the enemy suddenly?

Can someone help me clarify what is going on with him?
Thanks.

.

Also I think you should look into the acceptance process that goes on with dying. MS is not fatal but the over all acceptance process follows the same kind of a pattern, I believe it's four steps. Plus unfortunately, if he does have MS, it involves a level of brain injury and I used to fly off the handle at the drop of a dime and I still fight depression to this day.

Hang in there you will both be fine in a little bit..

The best thing you can do right now is as Bob said, be there, and be patient.

Sarah,

The absolute first thing to do here is to take a deep breath. And do me one favor for the both of you. DO NOT (I know this is hard) take any of these hyper emotional messages in right now; you have plenty of time to see how it's going to shake out after the shock wears off. What he's going through right now is the initial shock. It seems so urgent and everything is happening so fast. To date, this is a forever disease, so reacting in small windows of time when things are newly scary can be a big mistake. I'm going to sound like one of your old teachers, but here it is: Knowledge is Power. The more you know, the better you can handle what's potentially coming at you, ie you know what to expect. He is scared shitless right now, and you probably are too. Chris is right about some of the stuff to read about acceptance, he needs to be able to come to grips with this maybe being the way it is going forward.

If he's a police Lt., then he's probably used to taking on challenges. This one is one that he probably feels completely powerless over and, once again, is probably scared to death. All other challenges, if he was like me, just needed some analyzation and a plan laid out to be executed. You do it, then it's on to the next one. This is similar because there is plenty that you CAN do, but you probably just don't know it yet. Things like diet, and handling stress and exercise and rest, and some of the theories we all banter on and on in here about. But there's a caveat here, your plan could potentially not 'fix' the problem, but make it more manageable. You'll have to come to grips with that, because to date, there is no endgame here and if he's not going to just give up, he'll have to figure out how to make it a part of life. That takes MAJOR time, but I'll go back to the beginning, knowledge is power.

I remember a certain woman on here who also had a similar initial post. They were scared to death, and now through her efforts (and efforts of others on here) a camp of us are looking into a 'new' thing that has given many of us newfound hope. I'm sort of in a place right now with hope where I kind of feel like I need it like I need air, no matter where it comes from as I'm the type, and I think most of us are, who need to have that forward looking mentality, a point to it all if you will, and working on things to make it better and never just giving up. He's probably never given up on anything before, so why start now?

Lew

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Bob, Chris and Lew,

First, allow me to humbly acknowledge the pilgrimage you are on. I realize that you are much farther ahead on the path, and I salute each milestone, and the accompanying benchmarks you have experienced as you move along this unintended journey. I have no doubt you have earned each and every battle scar and/or medal.

Second...thank you for your candor, and willingness to assist me in what indeed seems like a desperate hour. You're all right on several levels, and I will take your advice to heart.


Bob, thank you for reminding me, that my husband, Steve, feels comfortable enough with me to express his feelings of rage and frustration. As soon as I read your words, I mentally smacked myself in the forehead and said, "Of course." Chris, thank you for the directional cues regarding the stages of grief. I forgot that they can be used for circumstances outside actual loss/death. I confess, however, that I didn't realize a person could move so quickly through them (my husband is weaving through them like cones in a traffic pattern). And your statements made me realize that this actually is a loss. He's losing much more than his well-being. He's losing his identity. (Well, he's not losing all of his identity, but he's losing a large part of who he was.) That has to be incredibly demoralizing. The fact that he is a police lieutenant seems to underscore what he will be losing. He is used to being able to overpower the, "Bad guys." And he can't strong arm MS. And Lew...I couldn't agree more. Knowledge is power. It is a code I live by. I pursue knowledge like a miner in the 1849 Gold Rush, and trust me, I've been all over the Internet, reading, reading and reading. I actually feel frustrated, because I can't force the information into my brain at warp speed. Still, it's going to take awhile before I can assimilate all that I have read, and will continue to read. I'm envious of all of you. You possess so much information on the topic, and I still stumble around, probably foolishly, unable to fluently converse on the topic of MS. But THAT WILL CHANGE eventually.

Finally, I'm always grateful when someone takes the time to thoughtfully respond to my frantic queries.

I am in your debt.
Sarah

Here is the 7 stages of grief which may get you and you husband on the path to healing..research grief management aka your husband is grieveing the loss of the person he used to be

Here is the grief model called "The 7 Stages of Grief":


7 Stages of Grief...

1. SHOCK & DENIAL-
You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the loss at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

2. PAIN & GUILT-
As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs.

You may have guilty feelings or remorse over things you did or didn't do with your loved one. Life feels chaotic and scary during this phase.

3. ANGER & BARGAINING-
Frustration gives way to anger, and you may lash out and lay unwarranted blame for the death on someone else. Please try to control this, as permanent damage to your relationships may result. This is a time for the release of bottled up emotion.

You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair ("I will never drink again if you just bring him back")

4. "DEPRESSION", REFLECTION, LONELINESS-
Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving.

During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did with your lost one, and focus on memories of the past. You may sense feelings of emptiness or despair.

7 Stages of Grief...

5. THE UPWARD TURN-
As you start to adjust to life without your dear one, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.

6. RECONSTRUCTION & WORKING THROUGH-
As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life without your loved one. You will start to work on practical and financial problems and reconstructing yourself and your life without him or her.

7. ACCEPTANCE & HOPE-
During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward.

7 stages of grief...

You will start to look forward and actually plan things for the future. Eventually, you will be able to think about your lost loved one without pain; sadness, yes, but the wrenching pain will be gone. You will once again anticipate some good times to come, and yes, even find joy again in the experience of living.



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HEARTBROKEN FROM GRIEF?

~Are you devastated by the loss of a
loved one?
~Bewildered by all the strong emotions
and crazy symptoms?
~Wondering how you are ever going
to survive?
~Tired of being stuck in a complicated
grief?


Back To Life! Our Personal Grief Guidebook might be just
the help you are looking for. Read more about this most
useful and practical recovery guide here: Back To Life!


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May your higher power guide you...

4 4 me

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Had ms for over 19 years now.

Welcome, Sarah...
The guys have said it all already (aren't they great?) As another wife, all I can add is that your husband is still the strong man you married. Affirm him, love him, make sure he knows you're in it together. He may be trying to push you away, because he's scared and doesn't want you to see him as "less than" who he was before this diagnosis.

I hope you find something in your searching that gives you acceptance and hope...I know that's the last phase on the steps thru the grieving process, and you will get there eventually.

My husband is more hopeful today, because we've found a paradigm and treatment that has relieved many of his MS symptoms. Like Lew said, we don't know what the end game is...but none of us do, with or without MS.
hang in there-
PS...Heads up, the administrator is going to ask you to make your lovely pic a bit smaller, so it fits on the page better
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Sarah,
I learned the stages of grief many years ago when I divorced. As I understand it, you move through the phases many many times, sometimes even in a day. You can skip some and jump around. All the while, though, in a larger way, you are moving through them one bigger, more complete time.

I second that statement Lew!
Being a cop, we are used to being society's repairmen. You name the problem, we have the answer and/or can fix it. After all, "There is a solution to everything" so we think...
Being a cop is a hard thing to understand, unless you have done it. Throw MS into the mix and all hell breaks loose in your mind. Especially if he is a Lt. then he has some time on the force. I have 20 years service myself, so I know where his mind is. The yearly physical fitness and shooting terrifies me. BUT, he can try and keep his condition to himself. Not share it with work, cause believe me, they will freak out. I dont know how far along the path he is, conditions wise. The "brain fog" really gets to you as a cop. You need to be sharp as a needle, that is what keeps you comming home everynight...Being on your game. It will be tough, no doubt about it. But he should have 20+ yrs under his belt, and if he can TOUGH IT out for just a little while longer, he should be able to retire. Hopefully thats your situation. But that is where his mood swings are comming from; having a problem with no solution. Soon as he realizes that, and educates himself on the disease, the sooner things will get better. He needs to get on the forum here and do some reading. TIMS was my salvation. Let him know he is not alone, that there are other cops in the same boat... If he ever wants to talk or has any questions, by all means, tell him too hit us up here! Bubba

BTW, Kudos to you Sara for taking the steps to understand and help with his new condition. Some of us are not as lucky as your husband is to have someone like you.

Sarah, one more thing: Being tired causes depression. It just plain does, no matter who you are.

MS causes fatigue.
Grief and worry also cause fatigue.

In men, depression often presents itself as anger.

--> In addition to everything else, figure out what you and your husband can do to make sure he gets the right amount of rest.

You can't just sleep off MS, or any other problem. But recognizing that he might need more sleep, and more figuring out how to get sleep, can make things a little bit better.

--> One thing that is tricky for me, is that I need exercise in order to sleep well. But exercise a)uses up energy we'd rather I spent on other stuff, like housework and b)means that overall I need more sleep. It's a paradox -- without exercise, I sleep poorly, get weak and out-of-shape, feel bad about myself, etc. But exercise itself takes up extra time and energy!

***

Anyway, that is something you can be looking at and starting to work on. How can you re-prioritize your life to give your husband the time he needs to take care of himself under the new circumstances?

Jen.

PS: He'll have to work within his limits, but your husband can still hope to enjoy work that is satisfying, rewarding, and good for everybody. Maybe he has to give over his current job. But I assume he's a smart, hard-working, responsible, dedicated person. There are other things out there.

Perhaps it would help if he came here and got to know the rest of us.

I think most of us were devastated at the diagnosis, but hey, you get used to it. For most of us it doesn't get worse fast, especially if your body is helped by the various therapies.

You can actually hang on in there. You will have to reorganise your life, one day at a time. We here are all doing it, just watch us.

_________________
Bibo ergo sum

I just wanted to thank all of you for your replies, and your willingness to share your experiences, struggles and advice.

It has meant a great deal to me, and I look forward to learning more, as we move forward.

I doubt my husband will join this site. He may, but he's always tended to leave the communicating to me, preferring instead to have me encapsulate the information I've gathered, so that he can absorb it quickly. Trust me, it goes with his lifestyle, and his personality. He's a super A Type personality, and he wants everything...yesterday.

Having said that, it's not lost on me, that this may slow him down...and there are always bigger things going on here, than just the obvious. So perhaps, in the future, he may slow down long enough to recognize that he needs the support of people who have gone through what' he's currently living.

Thank you again,
Sarah

Hi Sarah,
Welcome to ThisIsMS. I sent you a PM last Sunday regarding your avatar image. Custom avatars are fine. However it would be great if you could resize it to a dimension within 100 x 100 pixels as discussed in the FAQ.

Thanks, NHE