How does MS effect your relationships

[shannon_xray]

As you know I am relatively new to MS.  I am still working as an x-ray tech, which is getting more difficult everyday.  My coworker and I laugh at me when I get off balance and make fun of my new excuse for having CRS (can't remember *&%$) disease.  My memory, though, seems to be taking its toll on my husband.  I will admit, my husband got a bad deal.  We have only been married 3 years and I was just diagnosed with this beast of a disease recently.  I have had symptoms since we met, mainly being off balance and stumbling a lot.  I have dealt with vertigo for years and after my initial tests 20 years ago and being told I was fine, I learned to live with it.  My memory, however, is getting worse.  I can't seem to learn anything new. (I have a lot of brain lesions and a big one in my frontal lobe) My husband often tires of repeating himself.  I get emotional when he gets upset about repeating himself.  I feel he should understand, I showed him the MRI after all, but it doesn't work like that.  To add to that, I am tired constantly now.  Work takes the very best out of me and I didn't have very much to begin with.  I go to bed exhausted and wake up tired, it never ends.  Sex is getting harder for me, it's a lot of work that I used to enjoy.  I haven't cut him off but I can't perform like I used to.  My coworker is very understanding and we do our best to laugh but my husband isn't laughing.  What are you guys seeing in your relationships, especially with your significant others?  Do you have any advice?  I am fighting off getting depressed but it is a struggle.

Thanks so much,
Shannon

[shannon_xray]

No, Alex, you didn't make me feel bad, you are an inspiration and sometimes I need to remember I am not the only one who feels like crap in this world.  I deeply respect you!  I don't like asking for help either, which is why I came to this place.  I want to see what others with this crazy disease were doing and how they cope.  I have never been to a therapist of any kind and I am weirded out by it but if amazing people like you guys have been there, done it and bought the t-shirt, then I best get my t-shirt too because Hannibal is here to stay and I just want to give him hell.  I may need help with that :)
You are an amazing woman, Alex and one tough Carolina girl!

[HVAC]

I did not mean for you to feel bad. Your feelings are valid. All I want to say is I have gotten through the tough stuff. It is not a contest of who has worse stuff. Many on the forum are worse off than me. I went through 5 years of therapy when I was diagnosed with MS and I take mood modifying drugs. I am not one to ask for help. As I will take medicine for muscle spasms I will take medication for anxiety.

Alex

[kwarendorf]

She is :-)

[shannon_xray]

Thanks JJ! I can't afford to go down that road again and I certainly don't want on the medications either.  Just talking to ya'll makes me feel better I can only imagine what a psychologist can do!  Thank you very much!

[shannon_xray]

I get a reality check from time to time at work and here on this forum, especially with Alex.  Today my coworker said they did a CT scan on a precious 8 year old girl last night and found a tumor on her brain stem.  Stories like that precious baby are why I couldn't handle the ER.  I took it home.  Anyway, I feel guilty about feeling sorry for myself.  

Kyle, she sounds absolutely amazing!  I need to eat better that's for sure.  

Shannon

[supermum_ms]

"What can I do?  I don't want to 'the depression' again.  It's an awful, horrible thing."
A: Contact your neurology clinic or GP and request a referral to a psychologist who's worked with newly diagnosed MSers before.

Explain if necessary that you need a little help coming to terms with being diagnosed with MS. Since you've been depressed once before, you know you can't afford to stick your head in the sand about your mental health......believe me they have a lot of experience helping the newly diagnosed with the emotional upheaval that often happens, make the call!

Hugs.........JJ

[kwarendorf]

I am as fortunate as anyone with MS canbe, relationship wise. My GF of 15 years has never blinked. She is with me at all of my neuro appointments. She is a diet/exercise hawk. SHe knows that for me to fight MS I need to eat well and exercise. Early on I gave her the "out". If she dodn't think she wanted to deal with MS I would understand. Her response? "Don't be an a*shole!" :-)

There are some things that have caused some difficulty. Walking for one. I can walk very well, but only for about 30 minutes. We used to walk for hours. On recent vacation, we had to rest more often than before. One day  stayed on the boat while she went off on her own. These were clear signs that my disease has progressed. Both the actual walking limitations and awareness that my disease has advanced scares both of us and we react differently. She wants me to see the neurologist and I want to pretend it's fine. We get impatient with each other.

FOr us resolution lies in talking. The conversations about my MS are often uncomfortable. But they clear the air and allow us to continue.

I am guilty of DV's Happy Face mentality. It is hard for me to acknowledge that my disease is progressing. This manifests in my teling everyone that asks that I'm doing just great, no problems. I'm convinced that it's what they want to hear, an more importantly feeds my denial. This frustrates Linda. She is working to convince me that it's important to be honest so we can fight MS intelligently.

She has been my partner in all of this cr*p and for that I am truly grateful :-)

Kyle

[shannon_xray]

To be honest, it's all new.  See, I was expecting this to be a thyroid issue.  Take a pill and I get to feel like my old self again.  Dang, was I ever wrong.  

I admit, I am really mad about it.  I never have any energy and the things I used to enjoy are really difficult.  For example, I sell stock footage online.  I love shooting video. You see, I am a hands on learner.  I learn a lot from watching others on tutorial videos.  I have been trying to learn after effects, a program that allows you to add special effects to your video.  It's really cool.  However, I have a brick wall blocking my learning capability.  I got very frustrated and let it go.  I couldn't figure out what was wrong.  Then I got diagnosed :/ Eventually I will get back to it.  

Plus I have 2 beautiful granddaughters that have more energy than a power plant!  I wish I could harness that energy.  I need my energy back and currently my neuro is working on a strategy for that.  I need to be patient.

And, doggone it, I have become a pee factory.  I get so sick and tired of going to the bathroom!  lol  

What can I do?  I don't want to 'the depression' again.  It's an awful, horrible thing.  What steps are there?  What did ya'll do?  Plus, the last thing I want to do is go through another divorce.  One was too much.  That's why I worry about my husband.

Thanks!

Shannon

[supermum_ms]

"Right now, I am functional, but what happens when I am not."

This may never happen, do you understand that? Truthfully the worst case scenario your mind can come up with, is probably not even close to the reality you will ever face, your MS is unique to you.........stay in this moment of your life and don't worry about what 'might possibly could maybe' happen at some later date, it's not your reality now and may never be!

Heads up, i wouldn't be being 'me' if i didn't express my concern for where YOUR heads pace currently seems to be and the direction it could possibly be heading. There is are a lot of comments that are really standing out to me:

"I get emotional when he gets upset about repeating himself"
"I feel he should understand"
"Work takes the very best out of me and I didn't have very much to begin with"
"Sex is getting harder for me, it's a lot of work that I used to enjoy"
"I can't perform like I used to"
"I don't understand MS all that well"
"I am not used to being the one with my own 'horror' story"
"I am super sensitive about my cognitive issues and when he gets flustered at me for having to repeat himself I get all bent out of frame. "
"I don't want him to feel bad, I just want him to adjust."
"(guys are going to think I am terrible) but sometimes I fake it just so he won't worry."
"maybe I should toughen up when he gets upset with me"
"with diseases that have no cures..well we all know how that usually goes."  
"I am pissed about MS."
"I get embarrassed."

"I was on depression meds a couple of years ago......My primary care put me on Lexapro, and it did help.  I weaned off of it and have been doing ok. "

Q: Are you sure you are okay?

I actually see a lot that challenges your idea of being psychologically okay and hope you take a moment to consider IF this specific medical issue, is currently heading towards the black hole of depression, please take the steps you need to be proactive 'before' you unconsciously fall further!

Hugs........JJ

[shannon_xray]

Well said, Doublevision!  I am actually more of a 'realist' because of the field of work I am in.  I have seen death and miracles too.  I have seen from one end of the spectrum all the way to the other.  With the human body anything and everything seems to go, but with diseases that have no cures..well we all know how that usually goes.  
He was in denial and in fact he still could be.  I am pissed about MS.  I can't work like I used to as quickly, my patients out walk me on walkers sometimes and I get embarrassed.  I never did any drugs, not even reefer, I don't drink, smoke..never did any of that.  Maybe I should have :D  I have shared that with him.  I  try to be open and honest, I just wish he would open up.  Right now, I am functional, but what happens when I am not.  
But, after reading Alex, I feel like I have ingested a huge dose of humble pie.  

I will do my best to open up the communication windows and let it all fly in!

Shannon

[doublevision1]

You said "he does try to remain positive ...". I think that can actually be a problem, this obsession society has that we must always "think positive."  It's unnatural (human beings evolved to experience a range of emotions for a reason) and I think it can create a great deal of undue pressure. Being diagnosed with MS is not a positive experience, neither is watching someone you love go through it. There is uncertainty, anxiety, fear, anger, even guilt. Far better to put these feelings on the table, talk them out (with the help of a therapist if need be), anything but stick on a happy face when happy is the last think one feels. I think sometimes that pressure to be positive actually drives more resentment to build, then finds ways to come out such as impatience or irritability.

I'm not saying a good attitude isn't important, I'm saying a good attitude is not only about optimism but is about realism too. A good attitude doesn't mean one ought to stick their head in the sand and pretend everything's awesome when it's not.

I'm not sure how helpful this perspective may be, just something to consider if you or he are caught up in a cycle of "think positive" / feel resentful. It's OK to be scared. It's understandable to be worried or confused.  It's normal. The best thing you can do for yourselves and each other is to be honest about these things.

[shannon_xray]

Alex, tears are literally streaming down my face right now.  How unfair, it seems once we are diagnosed with one major disease, we should be get a free pass on the others.  Working in healthcare, I know it isn't the case.  I hate and despise cancer.  I mainly see patients who have had pathological fractures from metastatic bone cancer that our surgeons have put back together.  I listen to them and hold them as they cry wishing to God above I could take it all away.  I wish I could do the same for you.  Ovarian cancer runs in our family.  Docs don't screen for it like they should.  

What you said about men wanting to fix things is SO correct!  He would love to fix this problem and I wish he could.  My husband struggled with my depression too and he did tell me he didn't know what to do because he couldn't fix it.

I think your writing is a beautiful thing.  Your inspiration, as you are to all of us and anyone who reads your words, will live on well past you and all of us until there are no more written words on the planet.  You will go on inspiring others and lifting spirits for ages to come.  God bless you!  

You will forever be in my prayers!

Shannon

[HVAC]

The first  couple of years was hard for my husband. He did not want anyone to know. WE did not tell his family. The same with the cancer. I got mad and told his family about the MS. I told him I was upset he did not tell his family about my cancer. I was bald and he told his folks.

When I got out of the hospital from the cancer surgery he did not get how sick I was. He was always used to me being strong and handling everything. I found something I could not handle. We had a lot of help from friends. I had to have friends to talk to.

One day I was ready to give up. He always goes on long bike rides no matter what. Some how he did not go out on the bike. We talked and he took the next day off work and we talked some more. We were honest with each other. I did not know what he was thinking. I thought he did not like being saddled with a sick wife. He was terrified of losing me.

Then a few months ago we were having troubles. My puppy pulled me down and I hurt my knee. I had to have his help for everything for a month. Again he realized I am not made of steel. Again we had another honest talk.

I write which helps me. It makes me see things in different ways. When I started with my cancer I was super angry. I had MS then, late stage ovarian cancer and then the BRCA mutation which makes cancer all the time and means I have a 90% of Triple negative breast cancer which is mostly fatal. Since writing I am not so angry. I realized my anger made me really hard to deal with.

The same with depression. It is hard to live with someone who is depressed. Especially if you are a guy. Guy's want to fix things like MS. If they can't fix it they do not know what to do. When you get frustrated with your cognitive they want to fix it. They can't and they do not know what to do. They may make a joke.

I am happy these days. My husband and I have a great relationship. The saddest part for me is knowing how lost he will be when I am gone. I hope that will not be for awhile yet. My cancer is in my blood, liver, spleen, and lymph system. I have made it 3 years. The cancer has just helped me put life in perspective. I do not care if the dishes are piled in the sink. I tell my husband I love him every day. I enjoy my animals, and friends. I enjoy walks and swimming. I even like house work because I can do it.

There is not as much pressure in life now. I take it one day at a time. I do not need to impress anyone. I do not have to be smart, or funny. I just have to be me.

Alex

[shannon_xray]

HVAC, cancer??  OMG!  I am very sorry.  

You are so right, he most certainly has a right to feel the way he does.  I try to talk to him about it, but he doesn't open up that well.  We ride a motorcycle together, I stay on the back :)  It's challenging with my vertigo stuff but I manage.  For some odd reason, I don't know if it's the sun or the vibration in my brain, but riding makes me feel better and we enjoy it.  Maybe I can talk him into some counseling or maybe I should toughen up when he gets upset with me and just blame it all on Hannibal Lector.  

If I could see you now I would hug you tighter than tight!  

Shannon

[shannon_xray]

Girl, I am sorry!  Depression is an evil monster all by itself.  I was on depression meds a couple of years ago.  Of course, I didn't know it then, but depression can be considered a symptom of MS.  It probably or maybe has something to do with that massive lesion in my frontal lobe.  My primary care put me on Lexapro, and it did help.  I weaned off of it and have been doing ok.  I call it "THE depression" because by itself it is awful..I hope it passes quickly for you!!

Hugs!
Shannon

[HVAC]

Just as we want to be accepted for who we are we need to do the same for our spouse. If your spouse has no respect for you that is a different matter. I had to accept that my husband has aright to feel the way he feels about my illnesses.

My husband did not do well with my MS at first. We finally took a couples course put on by the National MS Society. It is about honesty. I want to be honest but I was not ready for my husband being honest. It really is about trust and communication. If you do not have the trust you can't have honesty.

My husband said when I was diagnosed with MS it became all about me and MS. He felt pushed to the side. I learned what things were important to him. A big one for him is to have undivided attention when he gets home. To ask him how his day went.

He needs to ride his bike and think, decompress. He went to some caregiver seminars which helped. He just wanted the MS to go away.

Now he wants my cancer to go away. We have gotten closer through my cancer. Mostly because we have a limited time together. We hardly fight. We allow each other our feelings. Nothing has to be perfect anymore. We appreciate the time we have together. We really appreciate every day we have together. The little things are just things.

Alex

[firerescue9]

Anytime, I can not say enough about the people on this forum.  I check everyday just to keep up on whats going on and ask questions when I don't know what else to do.  My husband also get frustrated but he is used to it.  
I lost the hearing in my right ear when I was in my mid twenties.  So the added cognitive issues just make it worse.  But he does very well.  We have our days don't get me wrong.  But we just deal with it as we go.  Depression is something that just recently I have been feeling.  Didn't think this was going to be an issue for me but am dealing with it.  

You are right having people who understand and are going through the same thing is a huge help.  There are some things other people just do not get.

Leanne

[shannon_xray]

I think my husband is also scared.  He goes to my neurology appointments with me and I was very proud of him for asking all kinds of questions.  My doc seemed to like him and was actually talking to him more than me.  I am super sensitive about my cognitive issues and when he gets flustered at me for having to repeat himself I get all bent out of frame.  He feels bad afterwards, but I don't want him to feel bad, I just want him to adjust.  I have the same issue in my female parts too, (guys are going to think I am terrible) but sometimes I fake it just so he won't worry.
  You have a head start on me!  We have been together 5 years and will be married 3 in October.  lol  I don't even want to think what I will be like in 22 more years :/  I am 44 and failed my brain MRI in March.  I was diagnosed a couple of weeks ago.   I have named my MS Hannibal Lector (Hannibal the Cannibal)  because it is eating at my brain.  If I don't laugh about it, I will cry and I much prefer laughing!  
Thank you so much for you kind response!  It's nice having somewhere to go to talk to people who understand!
Shannon

[firerescue9]

I am 47 and have been married to my husband for 27 years.  I was only dx with MS in January 2015.  My husband is also a "manly" man.  He has never been a person who can show emotions very well and does not like it when I say "we have to talk".  He avoids it when ever possible.  But he has been awesome since I started having problems and then dx with MS.  Our sex life has also been effected as I to also work full time and am very tired most of the time.  My worst is recently when I get up in the morning.  I also have other female issues due to the MS (lack of feeling in those areas) which comes and goes.  He is dealing with them pretty well but I know that he feels bad and I think it scares him.  But he is always there and very supportive for me.  I agree with JJ talk to him about it let him know how you feel/feeling.  Communication seems to be working with my husband and I.  It only took 27 years and MS to open him up. Wishing well to you and your husband.
Leanne

[shannon_xray]

Thanks for the words of wisdom, they are greatly appreciated.  I do try to talk to him but he really doesn't talk much about it with me.  He does try to remain positive, but I think the last neuro visit put it all in perspective for him.  I have it and it is here to stay.  I wonder if some sort of counseling would help but he is such a "manly" man I don't think he would go for it.  
I don't understand MS all that well either.  Neurology, for that matter, is as easy to understand as space aliens.  I can talk to you about your bones all day long but don't ask me about neurons and axons!  I have poured over my recent MRI's but can't really make sense of them, the spinal cord may as well be from another planet.  I can see I have a mild herniated disc but that's all I can read :)  I'm not used to being 'the patient'.  I am used to hugging my patients who have horror stories and listening to them, I am not used to being the one with my own 'horror' story.  Patients will tell me I don't have to walk slow for them...I'm not walking slow intentionally I loose balance if I go too fast...In my case it's the diseased taking care of the diseased :)  
I appreciate you responding and many thanks for the hugs!!!  I return them in triplicate!

Shannon

[supermum_ms]

MS like any serious medical condition, can make a relationship stronger or brake it apart.....

Unfortunately, i don't think you can ever really utilise other peoples relationships stories, to fix an issue with your own. It's not an MS thing, it's just because i truly believe every relationship is unique and when two people are involved, there's always more going on than what the person opening up, actually see's and feels.

You are both new to MS, talk to him, he will more than likely be confused about MS  and frustrated that this has happened to you and changed your lives.....talk to him!

I think the other half, the undiagnosed half can sometimes be swamped by negative emotions, feeling the relationship is no longer an equal life partnership, shared dreams and life plans being over, they now have all the responsibilities riding on their shoulders etc.....give him the opening to express how he is feeling!

Men are not typically the nurturers, sure they can be but women are typically the half that makes sure everyone's doing okay, women can unwittingly expect their men to start behaving like they would, if he'd been the one who was diagnosed, which might be totally at odds with who they actually are. It's not that he's being an insensitive a$$, he just might not be demonstrating that cares like you would, or providing the amount of support that you would, or being as tolerant as you would etc etc etc

Whilst you are both coming to terms with what's happened and are finding your relationship feet, either of you could be comig across as easily annoyed, frustrated, intolerant etc to the other, its part and parcel of the grieving/acceptance processes..........talk to each other!

Hugs.........JJ